Desperately Seeking "Susan"- More Advice From Suffering Fibros

I am new to these support groups. I often get too overwhelmed with these platforms because there is so much to read and say. Its taking me a lot to reach out and I have just come to a point with my condition that I am really having to really understand how support is important. I just would like to ask some suggestions, resources and advice for people who are going through Fibromyalgia alone with not a lot of people or family that are supportive or helpful. I am at the point that I am not sure how to live on my own and I was forced to go on short term disability with my job because I am at the point that I am “wear and tear” with my body. Thank you and thank god for all of you that are helpful and fighting every day. I want to find my silver lining with my condition.

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Hi Jojo and a warm welcome to you!

Brilliant that you’ve decided to reach out for support! :open_hands:
This community may be good for you because it’s been a bit quiet lately, so you don’t have to read or write too much. :slight_smile:

I’m not sure if it’s OK if I write quite a bit back, so I’ll keep it short-ish first and you can then ask more.
Sorry tho, I’m more of a Sutton or Sullivan than a “Susan” or Madonna. :wink:

I know it’s strange and tough having to stop working at least for a while. When it happened to me for the first time (10 months), trialling docs & treatments & researching became a full time job to me. And actually still is big portion of each day, altho I’ve now found many treatments that help & know a lot about my and others’ fibro & other conditions.

On your profile you’ve written “very chronic case of Fibromyalgia
You mean a very severe case? (Because fibro is defined as chronic.)

4 years now and it seems to be getting more severe and worse every month.
There can be many reasons for this. Fibro itself doesn’t really steadily “progress” or “degenerate” when you’ve got it. But it may seem that due to aging, co-morbidities, life circumstances, lack of adjusted activity, diet (weight), treatments and their side effects. Also there also often is a certain developing time before it is fully fledged. Then we may have longer term flares from an unidentified trigger.

But most importantly I’d ask if maybe you pushed thru work etc. too long - cos if you don’t pace enough with fibro, you’ll of course get worse and crash.

You were diagnosed by a rheum, and many don’t really know how to help us, like your PCP too. That’s not them though, it’s the problem that fibro is a vague diagnosis (causes unknown, no good treatments) and we are all different, so essentially we have to find out our treatments ourselves. What is good about your PCP not knowing how to help you to me would seem (like my GP) that he will be willing to support any suggestions you have.

As your PCP doesn’t feel 100% sure, you may want to print out this checklist (ACR 2016 diagnostic criteria), fill it in and show him and discuss it. Other criteria differ, I think these are the best and also the new orientation that other diagnoses no longer exclude fibromyalgia.
You say Lupus: Which of your symptoms sound more like that?

Treatment: You say your providers haven’t given you one, but pregabalin/Lyrica is actually one of the best bets to start with, you just have to analyze and decide if the main effects outweigh the benefits. Another is amitriptyline or if you have depression duloxetine/Cymbalta. Some of us like me have had to decide take supps instead of any meds. If you want we could go into that area - depending on your main symptoms…

Your other recommendations are brilliant: “(anti-)inflammation diet, yoga, shower in hot water and exercise.” but it’s not enough to try them, you need to know how, as all of these can be done wrong. But I’ll go into that later if you like, I see I’ve probably taken more of your time up than is helpful… .

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Hi JayCS “Sullivan” :grin:! Wow thank you so much and I don’t mind at all when you are giving me so much helpful links, details and especially the support. I am only overwhelmed when these platforms are designed like Facebook or twitter, but I get it and understand with Covid and everything it’s probably the safest and most informative. I just wish I knew more people that are similar to what I am dealing with that it is easier for me to call on the phone or E-mail. It sometimes feels like so much is going on these platforms, but I am working on looking at things more positively. :smiley:
SO, Lets start with the first topic- Work. And you are spot on with having to be our own advocates and doctors, I am learning that now. You are also correct, I am at this bad stage with my condition because pushing myself at work for 4 years and not understanding how this condition requires us to the max limit. Now I am at this level of desperate need of a “rest and recovery”. So I guess high five for me, I am not realizing the many big steps I been taking! To open up and reach out to a support group and the biggest and hardest step to take a leave from work. I think the thing I am dealing with is the fear of finances and the adjustment period during this leave because I am coping through this illness by myself. I think that’s the reason I never wanted to surrender because I live with my brother and his family, none of my family understand or try to understand. I go through that part where I go through a lot of stress and arguments with my family so it leaves me going through this alone. However I do not regret my choice also to take this time off. I just worry at times how to do this alone and if I will ever be able to be independent. I don’t know hardly anyone going through an illness/condition alone.
Treatment-Yes so far at least I am utilizing the basic recipe of Pregabalin, diet, yoga or exercise (whenever I am able to), discovering meditation, accessing Counseling and other types of Therapies. Now that I have this time off, I am just trying to find the right ingredients now that work and don’t work for me.
I have downloaded the checklist and preparing now for my next doctor follow up! So greatly appreciate that helpful link. I will write a separate paragraph of symptoms, hopefully it will be helpful to share that and see what you are able to give me advice on. I am so grateful and so glad I made the choice to get support on here, I forgive my family because its not their fault but anyone going through any change of life, no matter what it is, we as humans just expect support what come from your family. However, I guess that’s why I realized I guess I have to reach out to a different “family” of people who can understand-A Support group. A huge step for me, I have never had anxiety socially, but when you are losing people in your life because they don’t understand your condition, I feel its sord of traumatized me.
May I ask what your diagnosis is and how long have you had it?

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Cancel that question about your diagnosis, I just read your profile, Lol I am one of those people who don’t “read the instructions” before I put it the pieces together smh. :laughing: And I guess I am assuming that everyone in this support group has Fibro, hence the name of the support group “Living with Fibromyalgia”, But I guess I will blame that on my bad brain fog that’s almost like a dementia kind of thing.

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Hehe, no problem asking about diagnosis - sometimes on fibro forums we do have people who have just or more ME/CFS, or who are still looking for a diagnosis…

Another place you can find who and how I am is my blog.

Ah, those social media… - can’t stand those!
Yeah, these forums are a kind of e-mail. On this one you can even turn mail notifications on, and then answer those mails inside your mail provider. But that way there’s many features you miss out on. Like the search function. And you could have edited your first post for 30 days - by clicking on the pencil icon bottom right. But I preferred reading your correction…! :slight_smile:

Sounds a difficult situation with your brother’s family. Often we find that memes or stories, like on this thread Pics & Memes that visualize fibromyalgia and other invisible chronic pain illnesses - #97 by JayCS help, if reading information leaflets or going with you to the doctor’s (for them to explain it to them) isn’t viable. I’m glad you say you’re looking for therapy, that should help your general independence and find praps completely different pathways for yourself, but also different ways of communicating. Also to work on that traumatized feeling of lacking support and all the arguments and stress.

But yes, it’s also good to come here to not feel alone! There are/were actually a lot of people here who have to cope alone, so you’re not alone in feeling alone either. Differently to you they actually don’t have (hardly) anyone at all. So praps there is still a tiny spark of hope that you’ll be able to pull the relationship to 1-2 people in your family around. If you like you could also expand on where exactly their problem is, whether it was ever different, whether there are any starting points, like maybe the reason why you went to your brother’s in the first place.

I’m also very curious to hear all the details on your symptoms… :sunglasses:

Hello JayCS,
Pardon me for the long stretch of silence and to finally reply. I been having a series of “unfortunate flare ups” lol back-to-back. It’s been a heck of a couple of days. You know how the song and dance can go with us Fibro’s :crazy_face: and even when we do all that we can, we have those bad days sometimes weeks. I just read your blog and wow you truly are an inspiration, and you definitely have a wonderful story. The symptoms and diagnosis I imagine was not wonderful, but I am very happy for you that you have come a long way in your journey to keep searching and that you have improved on some of the things that were challenging for you.

You truly have so many blessings, courage and strength. It makes you an awesome advocate for us. So thank you again for your time and support for all your fellow Fibro’s. I feel anyone dealing with what we deal with, or any chronic illness are truly inspirational people for all that we struggle with and the courage we have to keep going because I am sure we have had a million breaking points where we wanted to throw in the towel or is it just me lol. And you are so right that it seems like our community of awesome advocate leaders like you are important in this support group. Its just something as simple as sharing your story and the things you have tried and experienced. And you are so right about none of these suggestions were provider recommendations. So let me share my story and symptoms in this next slide. :smiley:

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I am a very detailed person but also, I will try to remember also everything lol. So, 4 years ago it started when I was having a lot of issues with my monthly cycle as in, I was only getting them 1x a year, yep you read that correctly lol. I did see a gynecologist but at the time I was living back home where the medical care is really unfortunate or the doctor just didn’t seem to think it was abnormal because I was in my late 30’s, who knows but her horrible advice was it was “normal” because I was stressed. That went on for 5 years.

On the 6th year I got really sick similar to the way I feel right now, went to the doctor and all he told me is that I had something like a 80% of precancer cells and an extremely inflamed uterus, so I got a partial hysterectomy. About 4 months after that surgery, I went back to work and I want to say about 4 months of me starting work, all the million (it just usually feels that overwhelming) of symptoms started happening to me.

The first few (extreme weakness, exhaustion and pain all over body) symptoms I just thought it was because work was making me exhausted. I just thought that I was stressed or something, so I didn’t think anything about it. The one symptom that brought me concern enough to go to the doctor was one day when I was driving home, I just remember before I got to my street I slammed hard on the breaks because I didn’t realize where I was, it was so scary. Til this today I still experience those “brain fog” but that seems pretty intense for a brain fog so I call them “dementia episodes”. I definitely noticed that it happens when my fatigue is extreme. Actually, I feel like words like extreme, chronic or probably I don’t think there is a word to accurately describe my fatigue and I don’t if that sounds crazy or dramatic. I think that’s what has given me a trauma with talking about all my symptoms because when I did got to several doctors every one of them just kept telling I am depressed. So I just gave up at one point and stopped going to the doctor until the next year more symptoms started happening, and until present day it seems like every year sometimes, I feel like every month I keep experiencing different things head to toe. I feel like I always have to make a separate blog for just explaining my symptoms because I can’t just say I have fatigue and so on with my list, lol.
This condition I feel has made me bit of the dramatics because its like I don’t feel right just saying I am tired all the time, and so on, its like we have to give examples of how extreme our symptoms are. I guess it depends on how we experience them, as we all are very unique I guess lol. My provider is not satisfied with saying I just have Fibromyalgia, but all he does is lab work and its so frustrating because they never find anything. It has convinced me that I am crazy all the time and has created a great mental toll on me because the tests say nothing but my body doesn’t feel like its nothing. So with that being said, the only thing that has ever been a bit of a concern on my labs is my RBC, hemoglobin and hematocrit levels are always high and then sometimes low, then high.

I saw a Hematologist/Oncology specialist who just took my labs for 3 months until it was low again and then just said I am fine. I am not sure sometimes if they just don’t feel like they feel the need to really dig or go beyond when your younger, its like they don’t think they see anything is wrong even though I complain a million things I feel at times. So my provider wanted me to get evaluated only because he felt I was a candidate for a rate blood disorder called Polycythemia. Anyhow, present day I only been told I have Fibromyalgia. However, hope you have fun so far following this story and I am surprised I been in order lol. Symptoms as follows, next slide please-Turn the page lol.

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SYMPTOMS (Starting Top to bottom, head to toe etc…lol)
So mostly these symptoms I noticed are always linked with my extreme fatigue, and that’s usually me about 99.9% of the time. I also noticed when my fatigue gets extreme, and as the day goes on or when I overdue it, these symptoms seem to get worse when my fatigue is worse.

Migraines, light head/dizziness
Inflammation in both my eyes that has caused extreme dry eyes and my eyes are constantly watery and it burns, it has caused my vision to be blurry at times even with my glasses on. I get eye pain a lot too
Swelling in my face, eyes, hands, feet and legs.
Brusing mostly in my legs, I feel sometimes like I get these similar muscle spasms in my legs that feel like a Charlie horse but worse. Sometimes I notice these weird looking “water pocket” looking things around my legs.
Constant tingling, numbness in my toes, feet, hands
sometimes I feel a weird type of muscle weakness almost like I can’t lift my arms or hands, I always end up dropping things and I can’t grip things well, I get so numb and muscle stiffness in my hands and arms at times, it also makes it hard to do anything.
Palpitations, often my pulse is 99-100 range and it feels like my heart is going to come out my chest and that’s me not drinking any caffeine or it happens randomly, I could just walk and I get that.
PAIN definitely all over my body, but mostly from my neck down. My pain feels like extreme stiffness and like a muscle tightness, you can actually see my body when it has a flare up it looks so solid and swollen and it feels like steel.
I have a weak bladder as in I can’t control it at times, it comes and goes. I always get UTI’s
I am always getting prone to getting pneumonia, bronchitis (I am asthmatic too and since I had Fibro I feel it has made it worse)
My Skin is very sensitive that I have to have a strict skin care regimen and so on. I am constantly itchy to the point it hurts and I can’t sleep because I will be up scratching. I have never had issues with my skin or itchiness. I also have developed psoriasis on my scalp and I notice when I am exhausted it flares up and hurts. I have to use medicated hair products and changing my brush because a lot of the brushes hurt my head.I also get sensitive to the sun, I get sunburn faster than I ever had and I am from the islands.
LASTLY and hopefully I didn’t forget which brings me to this symptom: EXTREME FATIGUE, problems sleeping, my fatigue is so extreme I get exhausted just taking a shower. I can’t do a lot of physical things at once, I can sometimes get weak and tired just washing dishes and then I have to rest 10-20 minutes to do the next chore and etc. Its just a very abnormal tiredness that I can never explain. Its like I can only choose certain things to do daily and I am definitely limited. I have a very few days that I am ok and able to do a lot but then I end up overdoing it and I am still trying to figure out what is enough for me. I have friends and family tell me they can tell when I am exhausted because I get black under my eyes, and swelling all over and sometimes jaundice in my eyes.
My fatigue makes my memory so bad and sometimes “dementia” like.
I also have severe anxiety and depression, It has made me develop social anxiety and nervousness to be around crowds and I tend to isolate a lot.

I think that summons it up, and to the best of my knowledge. Sorry I basically felt like I just wrote my whole life story or something lol. It actually felt a little therapeutic lol. THANK YOU AGAIN for your patience, guidance and definitely your time to read all this. Hope you can see any helpful tips or suggestions I can try. Until then, hope you and your family are doing well and staying safe with the Covid on the rise again.

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@JayCS and I did forget some symptoms of stomach issues like IBS and sensitivity to temperature especially cold. So I live in Texas and our summers are scorching hot, right now its always in the 100’s, with how hot it is you would think I would need the air conditioning on super icy cold. However, I have the air conditioning on medium cold because I get so cold that it hurts especially my feet. Ok and yep, I think that’s it lol.

Thanks so much JoJo! :heart_eyes_cat: It’s very rewarding to get feedback like this once in a while. I read it out to my wife, cos she often has the feeling I may be spending too much time on fibro forums and thinking about illness. It helps me a lot tho, and I do it as a win:win:win - help for me, help for ‘you’ and it unburdens her from my motivation to talk about it so I can do more about it (and I think she forgets how much benefit she has from my successes). Anyway, my wife was chuffed too. :cowboy_hat_face:
A break, then on to your next ‘slide’ (very fitting name, cos since a few months the posts do sort of “slide” to and fro!). :sunglasses:

OK, I’ll follow your post order, so if you explain / add something later I may have to adjust / edit… Also I’ll put some things in bold as it’s so long, for easier reference (esp. for others… )

So mental/emotional stress and then pre-cancer and surgery, but pushing thru seems to have started it all off. Enough “**reasons / triggers **” - even tho that doesn’t make much difference in coping… except probably:
What kind of stress was that? Have/did you manage/-d to resolve it?

Your “dementia episodes” I’d personally praps call a “brain crash” rather than fog? Extreme doesn’t sound (over-)dramatic for what you experience, it is dramatic. “Severe” might be another appropriate word? That’s the one I’ve now started using for my fatigue. I once distinguished 11 “kinds of fatigue” here and recently added another 4 or 5. One of the last is brain fog as mental fatigue. Maybe looking at those you can find yourself or add some more? :face_with_monocle: :cowboy_hat_face:
Something like that only happened to me once, also while driving, long before fibro. I was in a driving lesson - I started very late and never caught on with it, I hate cars. My brain suddenly made me think my teacher had told me to turn to the left, so I did. Just that I was on the inner of two lanes of traffic driving fairly fast and would have crashed into the opposite two lanes of traffic. Luckily my teacher was quick and yanked the steering wheel back. We broke off that lesson to recover… I don’t think it was related to my focal seizures, but I’m very wary of myself driving anything more than a push bike, and even that carefully (altho fast)…
“Depression” to me seems sort of the baby answer of your docs, overwhelmed by it and unable to give better answers, but feeling the need to try.
You haven’t detailed which specialists. To my mind I’d get it checked neurologically, praps with an MRI. But if those don’t find anything they send us to psychiatrists, and those don’t know any different than suggesting somatoform or depression. I don’t have any signs of depression, and my first psychiatrist said that in my face, but wrote it differently in my report. My sleep lab psychiatrists and psychologists see that completely differently tho, and would put it in their report if I needed that. At the moment it doesn’t matter.
Yeah, we often have this ordeal going to docs with any invisible chronic pain disease. “It’s all in your head” or “depression”, whatever. What they (like other people too) forget is that it’s normal in situations of mental and physical stress to be sad, which is sufficient explanation of our mood, whilst it’s not sufficient to explain our kinds of pain and fatigue. Good doctors know this. But we don’t know that until we meet one. Tough if that takes a while. So I can understand the hurt making you unsure if you are “allowed” to say your fatigue is extreme. But working on and getting to grips with hurt or even more trauma I’d suggest it’s good to confront it and repeat, keep at it, like you are doing now: If it feels extreme, no matter what anyone says, we need to call it that. For me it was important to find a measure what I mean by “fatigue”, it was difficult for me to get my head around it myself, let alone communicate it. But after learning to get my pain very much under control it was the fatigue that debilitated all activities incl. of course work. Trying to give a colleague a measure I at the time came up with 40-50% of what I used to be able to do. In the meantime my jab-triggered MCAS sent me down to 10%, now seemingly (hard-) working up over 6 months to 25%. And realizing 40% was probably the ideal pre-jab. All sort of meaning I used to be able to be “physically active” 10h a day (actually more) and then only 10% = 1h per day. Praps this kind of measure can help you overcome your worry about how to express the intensity.

Your short term ‘solution’ of stopping going to doctors is completely understandable. Since it wasn’t helping at all, why should you? It’s just the question of alternatives - which I found first thru ideas of friends, and then more and more online and then also via forums. Docs only helped me after excluding many other conditions (but also some serious chance findings :face_with_monocle:) just by me explaining things to them, sometimes seeing their reactions and what they were wondering about.
in a similar sense as you ended:

However therapeutic in the second sense of not just mental hygiene, getting rid of the load, but deeper: Describing “everything” clearly and concisely brings it home to us where we now are and that helps find our own ideas to where we might now try going to, what’s important. So everything I write may be just a bit of accessory, that’s for you to see.

Same as you I started with easy summaries of my symptoms, till they started getting more and more detailed and focused, as you have seen when you compare the various months of my blog of the last almost 2 years. For the amount of your symptoms maybe a look into “my” structured list of symptoms can help - link at the end of each recent blog entry. And similarly just the past few days I was wondering how I’d now explain my condition in a nutshell, which I put at the top of yesterday’s blog entry (2022-08-06) - fatigue is first, along with ache, then “insomnia”, then pain.

Well I can very much relate to it not being enough to just say we are tired all the time. Similar example: We can say we feel like we’ve been run over by a bus / plane / rhino … etc. all the time. And likely someone can answer: Oh yeah, me too… Hmpfff…
But now when I tell even people who are hard in understanding (like “how’s your back?” :interrobang: :face_with_monocle:): “Stable at the lowest level” or “2x30’ or 2x60’ of activity yesterday was the limit” then there are no more questions, no disbelief, just dismay and compassion. But it was a hard slog learning how to cut thru.

On the one hand I don’t think your provider’s wrong with thinking it’s not enough to say you have fibromyalgia - some people do fine with a few medium adjustments, can still even work full time, just differently. Or in a different sense: It still might be something different, and it’s important to make sure it is. And of course docs not finding anything used to be a prerequisite for it being fibromyalgia. Now it’s just enough if you have a certain amount of widespread pain plus a certain severity of 6 further symptoms… If you have something else as well then it is still fibromyalgia. (See at the beginning and end of the ACR 2016 criteria)
But while looking for something else he should have been comforting and supporting you that it’s not in your head, your symptoms are real, and you have fibromyalgia, but also praps something additionally.
So … next slide can come, yep - I’m enjoying the ride :grin: :cowboy_hat_face:

In summary: The begin, the first few symptoms, the severity, the disbelief, the difficulty describing, continually new symptoms, the problem that specialists can’t find anything … are all key features of fibromyalgia, as well as being similar in many other invisible chronic diseases, whether more pain or more fatigue… So it sounds like it’s very good for you to at last have this diagnosis! :open_hands:

Symptom list: OK this is dead easy. Really no more symptoms than that? I’m sure there are. :rofl: No, seriously: All of this can be fibro and it’s a very similar range to mine (gut and back, rather than swellings though). Other things should still be excluded, but if they have been this is it.
Migraines, dizziness, eye problems, swellings, bruising, spasms, ‘water pockets’, tingling, numbness, weakness in arms/hands, palpitations, pain, stiffness, tightness, solid, bladder, inflammations, skin, extreme fatigue, needing breaks, often overdoing it, brain fog. Anxiety & depression can come before or with it.
But regarding the criteria mentioned: You obviously have the overall widespread pain in your muscles. Perhaps not so much spine? But limbs is enough, that’d be a WPI of 8. And the symptom severity sounds like fatigue 3, insomnia 0?, fog 3?, headache 1, GI 0?, depression 1, which would be an SSS of 8. And you’ve obviously had that much longer than 3 months. So I’d call that pretty severe fibromyalgia, like mine, especially if you’ve forgotten sleep and/or gut… (Edit: see below.)
Hope it can make you more self-confident if “even I” can “see” that from “here”… :sunglasses:

Now I could add 100s of treatment & coping ideas, but I’ll try not to jump the gun… :running_man:

Next/last slide: Ah, there’s one, the “IBS”… you’ve now “drawn equal”. :running_woman: that adds +1 = SSS = 9. These are my basics, if I get a headache or fog that’s +1 each, my sleep is only restorative due to hard work all night. Now if you had sleep, wait, wait, just searching: your sleep is bad cos of the scratching. Now you’ve overtaken me… :running_woman::running_woman: :woman_superhero: :bangbang: Dunno how many points you’d give your “waking unrefreshed”, but at least +1.
And sensitivity to temperature, esp. cold: Not in the criteria, but like all of the above extremely common. Air conditioning wouldn’t just be bad for me for the cold but also cos of the air movement. Cold hurting feet: I have Raynauld’s, and only when my surroundings reach body temperature do I reduce my 5 pairs of socks to 3 or occasionally 1…
The main symptoms of yours to get checked if you haven’t I’d suggest are the edema (?) and the tingling & by a neurologist and praps orthopedist: numbness and tingling in extremities.

Very interesting our similarity that people who know us well can see it in our faces: Only my wife can do that, similar to you: black under the eyes and not jaundice in eyes but white or blue lips and white yellow grey green shimmering face. No one else sees that, I’ve tried to train myself because it’d be a brilliant early warning system, but I can’t. So I just take it seriously when she says so and ask if she doesn’t if I need a break. She says look in the mirror, but I can’t see it. We’ve even done it together, I still don’t get it.
But I’m very glad to hear this, not only for your own support, but as you’re the first person who’s said that others can see it in your face. But it also comforts a bit of my worry that you started by saying

This at least sounds as if there is a toe-hold how to get them more supportive and helpful, by yourself learning to describe what you feel and what you need.

Now I can’t resist adding one first treatment question: Sleep is an essential starting point, and may get you a grip on it. And if your itching & scratching is causing it, that’d be what to try to prevent or treat first. So: Have you tried finding and minimizing triggers like water, soaps, deodorants, perfumes, certain clothing types, detergents, etc.? (In my case showering max. 2 minutes, gentle soaps only where absolutely necessary, gentle deodorants, no synthetics, not even 2% Lycra.)

@JayCS Tell your wife she is most definitely a hero in your story too! Family members and most especially Spouses are amazing support, and I am glad to know she is very patient and understanding. I can imagine it is also challenging for them to go through. I imagine it takes a very strong and special partner to go through it with you as well, So please tell her I am sending her big hugs virtually and I will try not to take most of your time :innocent:

I have 2 daughters and when they see me go through my flare ups, they always tell me they feel so helpless like they wish there was something they can do for me. I always tell them that their support, love, patience and understanding is so golden. It means everything because sometimes I am not even sure what they can do for me or help me with. It is taking all the learning and searching because I am still in the beginning stages of when I was diagnosed 4 years ago. For me especially because I only have my daughters. We live an hour from each other, they are both young adults and I asked them to please work on their careers and success. I can’t bear to have them leave everything for me. The rest of my family I feel just tolerates me and feels more like I’m an obligation because I have no one else type of scenario.

ON THE BRIGHT SIDE…It is ok I finally came to some peace with it because I understand caring for anyone with an illness takes certain type of people and I am just grateful for my brother and sister-in-law housing me regardless and during this difficult moment. It just gets to me at times because I have difficult moments in trying to figure out how to care for myself by myself. It almost feels like if I am living without any limbs, no arms, legs and sometimes feels like I don’t have a body lol…if that makes any sense. I relate that term because of the control we don’t have most of the time and my body just overwhelms me with all its symptoms hitting me all at once sometimes that it feels like you have no connection with yourself. :face_with_raised_eyebrow: :stuck_out_tongue_winking_eye:

I refuse to not give up and I will find a solution one day. Unfortunately, its just taking a little while to get there. I had my place for a moment but the reason I am living with my brother is because I kept getting injuries due to how chronic my fatigue was and it was really difficult to do a lot with the chronic pain (Still Is lol). That combination of chronic pain and fatigue was the recipe for me pulling a muscle when I got up from the couch, taking a shower, there was more type of injuries, but I can’t remember. Probably leaving the stove or oven on, forgetting things I was doing etc… It was that last injury when I fell down the stairs that my family found out and they said no more and to live with them until I can figure out how to cope and heal.

I think other fellow Fibro’s like you, and I am sure there are more awesome Fibro Warriors out there that give me the hope and motivation. You would just also have to excuse me for my disbelief in parts of your blogs too that sound like you are “better”. Pardon me, I don’t ever want to sound negative with your success in finding solutions for you that have helped you because I am also very excited for you and glad you were able to find solutions.

However just on my level of my condition at this point, “Better” is a term that I struggle with because I even cringe when people always tell me “I hope you feel better” or “get better soon” because I don’t understand in our condition what is “better”? It might be my lack of knowledge and me still learning about my resolutions. Perhaps it’s the moment I am at with my condition because things that I have tried or done, not really have helped a great deal. It’s just the confusion of it all and if we do really get better? Does that mean for everyone its different? I understand that there are different coping methods and treatments that I imagine have helped you to manage your illness a lot better. I guess I struggle with the “better” part is because of being told there is no cure for auto-immune types. However, again, I am also really determined to get your advice and suggestions of trying out things you have tried or suggestions. I am open to everything because I feel like I am lost always and that I am not doing much for my case.

So far these are the only things I have tried and because these were also my PCP suggestions. I am taking more vitamins than I take for my maintenance medications. The crazy thing is I am not sure if the vitamins do much or if I am taking the right kinds lol. I am assuming most of them are working in the sense that my lab work always comes back clean or on good levels if you will.

So my vitamin cocktail includes: BIOTIN (helps my skin issues and my hair loss issues) VITAMIN D (I have vitamin d deficiency) VITAMIN C with Rose hips (for my immune and heard the rose hips help with skin too) OMEGA 3, CALICUM, Elderberry with zinc gummies (for extra protection during Covid and heard the zinc helps with lethargic/energy.
FIBRO: Lyrica 2x
ASTHMA: Steroid inhalers, Rescue inhaler, Allergy/asthma long term prevention pill called-Singular.
IBS or for Acid reflux symptoms: Pantoprazole (I just started taking those about a month now)

I also drink this strong ginger tea every day to help my tummy and bloating. I really try and prefer non medication solutions if all possible, I never been a medication person probably the way I was raised and because of my culture. We believe in medication, but we just rather take the herbals and natural, organics. Since I am residing in the US, in my opinion it feels more out of reach and harder to seek those only because the US is too commercial with the “organics” if you know what I mean. It gets too hard to know the real deal stuff here because these organics are a popular fad these days.

I am trying with my nutrition; I do notice some foods that trigger a flare up like spicy foods and sugar. I will be honest I don’t think I been eating pretty well lately, but I have usually stick to a all veggies, fruits, chicken, fish, whole grains and water only type of thing. I even cut out a lot of sodium as much as possible and try to limit the process foods. The thing I struggle with the nutrition part is because of my fatigue, I get too exhausted to even do the minimal of anything so eating well requires a lot of cutting veggies, fruits, and preparing. I know at this point it sounds like excuses lol…I promise I try to find some easier ways but as you said, its a full time job to take care of our condition, its just so many things and steps depending on how chronic we are. For me because it’s pretty much affects me in and out, head to toe.

PHYSCIAL ACTIVITY: This one is the part I get the most overwhelmed and it stresses me at times and I think its created a trauma for me. The reason its that way for me is because before I got this diagnose, I was a very fit gym person. I was a dancer since I was a little girl so its almost like telling Michael Phelps his career is over. Devastating and hard to adjust. I try to fight this because I am still blessed that I still have all my body parts and I can still move…well hardly at times lol. I have tried yoga, but I have no clue which ones work and I am definitely needing that “Yoga for dummies” edition please lol. So I am just learning because I am going by google and yoga apps but I feel I may need a professional.
I have a bipolar and “seasonal” relationship with the gym lol. I have been able to get successful with working out and I definitely go at my pace. The challenge and issue I face with is what is too much? I get too excited when I go to the gym because I love to work out and I sometimes think I can do my regular workouts.

I have set a routine like 10 minutes on the treadmill and 5 minutes of incline walking. Then I do all resistance training on the machines and try not to go over 12 reps and go slow, at my pace too. However, when I come home no matter if I overdo it or not, I find myself needing to rest with my legs elevated for an hour and then sometimes my rest time after the gym takes me 1-3 hours before I can have the energy to do anything else. So just in general, It just takes me forever to do anything from taking a shower, cooking, cleaning etc. Its not that its impossible its the rest time I need at times because of the weakness, pain and fatigue. So hopefully there is a happy median with this.

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As always, I forgot to add lol:
OTHER MEDICATIONS: These are not my daily meds, these are whenever I deal with these symptoms which feels like it depends, and sometimes its monthly and sometimes its every other month LOL, Smh. :crazy_face:
MIGRAINS: OTC Good Ol’ Exedrine Migraine pills, dark cool rooms help
BLADDER CONTROL: Phenazopyridine

I also find it helps to talk a lot about what I am feeling so that’s why I try to make sure I have a Therapy routine. I love life coaches and I often need to change my Therapist, I have not been able to find one that I connects with me and that makes me feel comfortable.

I love mediation, that is definitely a must in my daily routine. I have some massage devices and that’s a gray area because sometimes I can tolerate it but 99.9% the slightest massage or touch has me in tears and screaming. So I saw some alternatives you mentioned and definitely would like to know more about it like Cryo therapies, and the thing with the needles. Lol sorry my “brain fog” is attacking me and I get gibberish almost like a toddler that is still learning how to talk. But anyways, I imagine there has to be more therapies out there besides medication that can be fun for me to explore. So let the adventures begin!

On that subject, with the brain fog and fatigue because I feel those are mostly the star of the show lol and the terrorist that invades our world lol. I don’t know how I drive but I have no choice. However I have needed people to drive me at times. I don’t like driving either because of my fatigue, pain at times and spasms I get, not to mention the brain fog or confusion we experience that makes it dangerous. Beside the experience I had of not remembering what street i was on that one day, I have also had similar episodes like you where I get confused and have turned on the wrong part of the roads and etc. We must have an angel because thankfully all those moments, no one was on the road at those times and I never got hurt. I just know my limitations and when I drive, I been only driving of course when I am not at my height of fatigue. I also only drive small distances. BUT AGAIN, ON THE BRIGHT SIDE…I am just blessed to be able to drive when Its safe for me. :laughing: :innocent:

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I’ve edited my long last reply to your 3 slides quite a lot and can now also see you replying, maybe you can see me :smile:

Ah, I can again relate to absolutely all you’re saying.

Great you have your lovely daughters. I think the bottom line with them and the rest of the family is that we essentially are “alone” with fibromyalgia and do need the support of others with it to get on.

Yeah, I get that. With having learnt to get my pains etc. very much under control, it’s mainly my energy I find it hard to get under control, which means I have to sit switching between several twist-stretched positions most of the day, everything else is a strain and needs rest again. That makes me turn to the image of locked-in syndrome or ALS, altho of course I’m much better off, but the feeling of being mentally awake, but hardly being able to move is striking. So slightly different, but I do understand the way you mean it.

If you’re anything like me I also believe you will find things to cope and get some things better, maybe like me not “a solution” but many many many small ones. And yes, that’s what makes the work at it so hard. If we’re working or haven’t got the motivation then that’s gonna take ages, but if we have enough reasons to put it at #1 priority, then we can get “better”. After 10 months sick-leave and having run thru all the harmful treatments docs were suggesting, and started finding better things of my own, I could start work again and (with breaks due to having to define my limits and some supps I was trying out) would have been able to keep that up at about 30%. If it hadn’t been for the jabs/MCAS, which have made me look for other solutions.

I’m totally with you regarding “better”. I’ve debated with someone, I think it was Freedom on this blog thread who first didn’t understand why I was saying I have been in a full flare since Dec19. Rather like you my argument was that everything I have achieved since then is only possible because I am doing about 80+ types of treatments and strategies all day every day, no relenting. My biggest success are my local pains, down to 10%, so definitely better on that level. But my overall Ache starts getting debilitating after 1 hour at the latest of physical activity. But that combination is wonderful for my quality of life, because it means as long as I don’t move, I’m feeling pretty good. And I can do that a lot of the time, as long as I don’t get sedentary, which I definitely do not.

You’re dead right with this. And despite you saying you’re at the beginning, your thoughts are brilliant, we’re talking on exactly the same level. To get a better understanding of my condition, I’ve divided my “better” into loads of different scales. And any small improvement on one of them is for me “better”. Every new treatment success. I don’t think it’s at all possible, but if I had to put it in one number or word, I am of course severely sick and severely disabled and will probably remain that the rest of my life. But with a different perspective, accepting, adjusting, remaining happy, it’s still a very good life and I’m happier than many other people. I don’t think it’s lack of knowledge, it’s more a question of our values and mindset, like you say. But also that I have with a ton of work managed quite a lot of successes.
So as you say: no, “there is no cure”. At least not as yet. What I’ve been seeing in the dynamics of research it will take at least 20 years, unless machine learning helps. You say autoimmune - they really have only slight ideas that it might have a autoimmune component, very far from real knowledge. So I’m not waiting! :smirk_cat:

As I may have said: I’ve made researching and treating myself, self-caring, my #1 job, because “I’ve deserved it” and the people around me deserve it too. Also I like doing it. Something different, never done that much in my life, always loved being there for others and never watching out for how I am :smile: :crazy_face:

Before I forget it again: Your asthma of course is not fibromyalgia-related, it’s immune system related. That makes me think of my other new jab-triggered condition MCAS, meaning the mast cells overreact by sending out too much histamine altho unnecessary. So if you have the feeling your skin and gut and asthma may be that, maybe we could follow that line of diagnosis, if you want…

Vitamins etc.: Well, like you these were difficult for me as I wasn’t sure if they were helping and I needed something to really help, not just a bit of superficial pancake. But I followed some vitamin & mineral protocols at the beginning and they did absolutely nothing, so stopped. Then tried more and more seemingly unusual stuff, sometimes with tough side effects, until I got a handle on everything using amino acids like GABA.
So as you can see everywhere, I’m definitely on the natural & organics route, which is easier for me here than for you, because the people who are in the organics “industry” really mean what they say, and I know that because I was in it from the start, working in an organic food store in the 80s and know how they work. In the US that’d be another matter. But still I’d be trying as much as I can, which you probably are.

My comments on your meds and supps:

Pregabalin/Lyrica is one of the norma ones for fibromyalgia, FDA-approved, with a certain amount of medical evidence. But still has many side effects. The best similar alternatives are duloxetine/Cymbalta (esp. for a bit of depression) and amitriptyline. All with side effects. So if we try meds we need to balance main and side effects, and if we think the side effects are too tough, then try switching.
Now your main symptoms are probably the mental and physical fatigue, and my first question is if the Lyrica, added to your asthma/allergy stuff may be causing a large proportion of your fatigue. In comparison, I tried amitriptyline for 4 months, altho it was zombifying me day and night, and I could never have worked at all taking it. It only helped for sleep, nothing else, and caused 8 side effects, and in the meantime I’d installed pretty good strategies for sleep (preventing triggers) - it was such a relief to say goodbye to that stuff. And every time a supps did something similar (like melatonin and CBD especially, I knew quickly to not tolerate it long, but to reduce the dose to the smallest possible, and when that was still doing it, to stop fast - did cost me a few weeks of work though).

And to continue with meds first: Like most meds, Pantoprazole suppresses the hyperacidity and can cause other side effects, so I much prefer to identify my food triggers and eliminate them. Yes, it’s tough, and due to my histamine problems since MCAS I’m down to 50 foods, but I’m med-free.

Supps: I wouldn’t argue that much with any of the ones you’re taking. I’d just ask about the dosing, product sorts and fillers (that’s my MCAS talking…).

Biotin if it does help, yes…

Vitamin D if you are really deficient would need to be checked regularly, and taken in high dose, like 20 000 IU 1x/week, and best with K2(-MK7) added. Mine is still only moderate despite 20 000, so I added a sort with vit. K2 added.

Vitamin C I’d ask if this might be triggering your hyperacidity, I take the “alkaline” sodium ascorbate form, in capsules (I self-encapsulate powder so it’s purer and cheaper). Similarly rose hips with their high amount of vitamin C - natural form yes, but anything like that is too acidic for my stomach. Especially as for MCAS I should be taking 1-3g/d, recently I’ve preferred to go easy on my stomach, so only 1g/d.

Omega 3 I use olive and canola oil for, but have realized I also need a higher dose, so fish oil or fatty fish would be best, but that for me means a vegetarian substitute for fish oil, which is microalgae - bit expensive tho.

Calcium is a problem - for pain and praps sleep we should be concentrating on good magnesium forms, like malate or glycinate, and calcium counteracts that. Not magnesium citrate with hyperacidity. That’s the one I’d be most wary of.

Zinc may be OK, my GP/PCP also recommended it to me. But then I saw that zinc and copper are antagonistic and got zinc checked: It was too high and copper much too low. So I stopped zinc and switched to copper for a while. Getting it checked again soon.

I didn’t know anything about elderberry, e.g. acidity. Looking it up it seems more alkaline, but not recommended for autoimmune conditions, so I’m not sure if that’s OK for you: No black Elderberry for autoimmune condition??? | Mayo Clinic Connect (Mayo Clinic itself is a good source, but this is a forum there and only quoting WebMD, which is not a reliable source, so we’d need to prove that further, if it’s important to you.)

Ginger tea: I only realized about 5 years ago that like anything minty, spicy, onion-like, sour this increases my hyperacidity. It may be good for hypoacidity or gut, but I now avoid it like the plague, preferring eliminating and if need be eating almonds, drinking almond milk.

Food: Ah, yeah, spicy foods and sugar, yep. In comparison to you apart from being vegetarian (pretty vegan) I’ve drastically reduced fruits (unfortunately), cos of sugar (lipids), acidity (stomach) and histamine, so only apples, some berries, the occasional dried raisins or a fig. So mainly veggies, mainly raw. (See the 50 foods link at the end of my blog entries). If grains, then whole meal, but usually gluten free, just to be safe.
Most of this was for stomach & gut & general health, and now histamine/MCAS, it doesn’t do anything for my “non-GI fibro pains”.

Cutting veggies: I eat quite a lot of them, usually raw, and need about 10 minutes, often about 8 types of veggies. If my hands & arms are weak I rest them on something while cutting, which takes longer, or preferably task-switch in between, like prepare some dishes for the dish washer or tidy something. First I cut off the amount I think I’m going to eat in that meal, put the rest aside, then peel the sweet potatoes first, then wash the other “7”, then cut. (Fairly small now, cos of my esophagus blocks, or when I had tooth/jaw problems.)

Yes, dead right with it affecting all of us. So of course it’s a matter of prioritizing - what’s heightest priority - my suggestions at the moment still being reducing skin triggers for better sleep and check if the meds are causing part of the insomnia.

Physical Activity: I was also an amateur dancer as a kid actually, would you believe. And got from hardly doing any sports to doing 1-2h per day about 10 years ago - table tennis, gym, cycling, sometimes football. So I know exactly where that’s from. But we just need to pace very differently. I still now manage 30 to sometimes 40’ of table tennis every day, altho it’s the only sports I can now do, sometimes praps a “7’-scientific workout”. But lots of bits of exercises & stretches all thru the day, if necessary up to 5 hours. Not as exciting as dancing etc… By the way my favourite “twist-stretch” (pics somewhere above in my blog) is fifth ballet position (feet and arms and hands open outwards), praps stretched slightly backwards more, for my back.
No, I don’t think you need a professional, because they all don’t know fibro, even if they pretend to. We need to listen to your own bodies and that may just mean seconds or minutes, but regularly, professionals don’t know how that works, can’t do.
Yep, learning to pace, not to overdo it is the big challenge. The cortisol (‘adrenaline’) tells us everything’s fine, and once we stop moving the pain floods in. We are then doing too much. If you need one hour strict rest afterwards, that’s something I('d) want to live with (and always do after table tennis), bjut more than that is dangerous. Instead it’d be good to halve it and do it twice a day…

Right, off now, more on the next slide later…! :slight_smile:

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Next Slide >>>>> :laughing:

So far the Specialist I have seen and have not been able to give me much solution, information and help. Honestly I feel for them, I feel they are literally just this emoji :crazy_face: :thinking: :roll_eyes: :expressionless: So expression sometimes tells it all lol.

#1-Cardioloist (For the palpations)
#2- 4 Rheumatologist (All have sent me back to my PCP, and only that said Fibromyalgia, the rest said I was depressed)
#3- Hematologist/Oncologist (Just did lab work due to my high levels of RBC and for possible Polycythemia condition)
#4- Pulmonary (I am still needing to search for one, I haven’t seen one since last year) To manage my asthma that I been told that the Fibro has made my asthma worse. Also because I get pneumonia, bronchitis much. The only findings so far is I have been told I had a tear or slight puncture in one of my lungs. I have had needed oxygen therapy at night. So this is an in important specialist that I need to get another opinion also, plus my previous one was rude and I just didn’t appreciate how he was to me and the staff. They stressed me out.

Those are the Specialist I have seen. My PCP seems like he agrees to refer me presently to a GI Specialist, Neuro but he struggles with actually doing it because he says it would have to be a matter of test to support the reason he is referring, something like that. Which makes me just feel like he is saying he has nothing to refer me when CLEARLY I have symptoms that I thought would be enough to refer me. But I am no doctor, and I guess me being the advocate of my what I am feeling and symptoms that I been struggling with for years has no support that he can use in the referral. So you see how its a struggle with my history of providers and healthcare, as I imagine a lot of us struggle with this. I just deal with the trauma of the side effects of this of gas lighting, the emotional abuse and the constant different doctors, the stress and toll it takes for the searching. Its almost like having several toxic relationships back to back. Everyone tells me to find another doctor, but living in Texas I just have this sense that I need to look out of state. This will always be a topic that I constant put on the back burner because it creates a trauma for me.

So I am going to jump to the other symptoms to elaborate: The sleep issues and skin sensitives/itching.
#1- SLEEP: I do have insomnia at times bad. I don’t have any issue with falling asleep, its staying asleep. I also wake up a million times. Sometimes its my overactive bladder, pain and to get in comfortable positions (I have bought so many different types and shapes of that sometimes help lol) The itching also wakes me up and then I can’t sleep for an hour or 2 because I am trying to scratch my skin off lol. Then there’s the times I just wake up for no reason and I am up for a couple hours. So I guess that’s where I found “insomnia activities” like puzzles, extending my book collections, binge watching, DIY YouTube obsessions lol and music obsessions.

Besides the itching, sometimes my skin looks inflamed. I break out a lot and I never had that since puberty and then after that I have also been a skincare person. Sometimes I notice these little red bumps all over and they never go away. I get rashes sometimes. I mostly breakout on my chin, I even found some bumps on my tongue that hurt. it comes and goes. The itching becomes painful and especially on my scalp since I have psoriasis on my scalp, its horrible and painful.

So the only thing that I have tried and some As mentioned, the Biotin seems to help mostly, and I also drink only Alkaline water I have researched the benefits it has on your skin, and also because I am so sensitive and prone to getting dehydrated more than a person who is healthy, if that makes sense. I just notice I don’t go to the ER anymore for an Ivy bag because I am severely dehydrated and that’s me drinking regular water because I do make sure I drink plenty of water so it’s so weird.

I have tried plenty of different sensitive lotions and creams. I am still searching but I have a very strict and million steps of my skincare routine that again, makes me day filled up lol. I have gone a couple days of not doing any of the steps and It does make a difference. So far I have only known that Aveeno bodywash helps me. However, the other Aveeno products like the lotions help sometimes. So I usually do lotions, oils and try to triple moisturize and the itching still happens. So this is a area that I am still working on.

ON THE BRIGHT SIDE :blush: The only tried and true product that has helped me is the T-Fal shampoo’s that I absolutely can’t live without for my psoriasis on my scalp. I have found that that Tar ingredient is what helps, although I am sure its also not good and probably a chemical that may have some bad side effects, but we just can’t win this battle with this evil illness and that’s so real.

So I am sure you and I could write a full novel by now, which I think you should you seem very experienced and knowledgeable level with your condition. Your patience is immaculate at this level you are on that I hope I can also be a helpful advocate one day. I have a passion for helping and inspiring people. I think everyone dealing with an chronic illness has a change of plan and goals, well maybe most and mostly ME lol. I feel this illness had changed me in the way that I only feel like I am only good at wanting to be inspiring and motivational conversations and being a Fibro cheerleader. Its all I know now a days. Its hard to not talk about it all day but I am trying my best to act like I am not sick lol… :joy: :crazy_face:

So I think I have reached my limit for the day and I am dealing with breaking down a lot when I keep talking about my illness. Its no one’s fault but I also can’t keep isolating and keeping it in. Working on all that.

Lastly, the stress and depression part in all this for me is definitely due to the trauma of my experiences with dealing with the doctors, family who give me a hard time about me illness saying I am lying and arguing with me of what they think I have and the way they support me stresses me that I begin to isolate. I have lost a lot of friends because I can’t keep up with the plans and so forth. Its the overwhelming experiences of the daily millions of symptoms and all the financial, mental, physical burdens dealing with an illness.

Its the adjusting and changing your whole life in an instance. Its just the whole toll it takes on a person, I did have a therapist tell me its created a PTSD for me because it goes deeper than what I mention above. I just don’t want to go in detail with the stress of my experiences or it will trigger a lot of things. So I try to just stay looking at the positives for me, which sometimes feels harder to reach and search for. But I know its out there. So that was all the stress that doctors kept referring to. Every time they would say I am depressed; I want to scream at the top of my lungs LIKE DUH!!! Of course I am depressed because of everything I been dealing with and still dealing with. Its not like a flu or something that will pass and do these couple of regimens and I POOF I will be healed and can go on my merry way. And back to my regular life like nothing is happening. You know it took me 4 years for me to accept the definition of “Disabled” and that I am “Disabled”. I had to write down all the equipment I use to function, and the challenges I have, the changes and adjustment. When my doctor saw my list said that is a definition of Disabilities. At my age, it is a little harder to cope and find your way through the reality. But AGAIN ON THE BRIGHT SIDE :innocent: :innocent:…There is always a possibility and I have to work on my perspective and strengthen my mind to deal with every day and every aspect of this illness.

I have had to use special equipment in the shower because of how chronic my fatigue is and when I get those dizzy spells and the pain that limits your ability to pretty much move. Because of the bladder issues, I have to spend a lot on waterproofing everything. Because of swelling and inflammation, I have had to change my whole entire wardrobe to special clothes, shoes and tools that help me when I can’t bend to put on socks, or when I can’t dress myself at times etc. I use different canes when I get injured, or have trouble walking or dizzy spells etc. So I can list more but you get the picture.

So all in all, writing those down and talking to other fellow Fibro warriors helps me realize how real, how valid everything is and how much its NOT “In my head”. Its tried and true, the most real. Reading all this I wrote and again writing it just made me realize a whole lot of what I deal with is so real and complicated. The funnier thing that’s just a snippet of details but no need because you understand.

Thank you again and I can’t stop telling you because I know it takes a lot of time and energy we can spark up to write and reach out, and then read all this and offer your advice and help! I wish you and your wife a day that I hope is a good relief day of minimal pain and symptoms. Until next time! Please take care. :man_superhero: :sunflower:

…Fatigue, paresthesias and cramps are “uncommon” side effects of Singulair…
Alternatives for bladder control might be Kegel exercises etc. (like Michelle Kenway and others on youtube). I once lost it a bit for a few weeks too, altho I’d been doing Kegel, scarier for me than the other 3 bladder problems.
For Nausea/dizziness I use homeopathic nux vomica D12, apparently it or its placebo effect helps me… Any triggers?
Migraine triggers? Does your ginger tea help? - and also not increase your tummy problems?
Yeah, I’ve also found therapies very helpful all my life, but getting everything but the physical side sorted was like you say much harder finding somebody, but I eventually remembered someone who’d helped me before and she was great for a time to give me feedback and support and a few ideas, and now I can still ask for a short-term appt. if I need it, the last one was due to a work stress situation. I’m going to do an online ACT (acceptance & commitment therapy) course in November, something I’d greatly recommend.
Your meditation might be my Yoga Nidra I’d think, but I use it at night to speed up getting to sleep.
I mainly had a little allodynia in the first few months of the fibro-full flare, plus in the weeks after the jabs (so MCAS rather than fibro, making me stop acupressure and even have problems with cold showering. So I guess that’s similar to with massage gadgets. Still preferable trying ourselves to find a minimum area or intensity, rather than someone else…

For cryotherapy, the thing with the needles :smile: (acupuncture) and the thing without the needles :smile_cat: (acupressure) an important bit may seem to be finding a therapist. But actually there are workarounds for cryotherapy and acupressure: Cold washes/showers etc. and self-applied acupressure using youtube. And doing it ourselves again helps us finding our own dosage, as always starting extremely short and small areas.

Ah, so I did guess right.
As regards your sort-of-joking about it being a “terrorist”: I always try to avoid negative terms for it that make me feel that the condition is some enemy in me, which I am fighting. It helps me much more to see it as a warning signal showing me that something’s going wrong and needs attention, self-care, self-love etc. If at all the “enemy” I’m “fighting” is my lack of this, always overriding my needs. But I know that was a necessary coping mechanism for much of my life which i slowly had to extract myself from and have managed to a certain extent - this is now the advanced class for me… :face_with_monocle: I manage pretty well by cheating, for instance by writing a lot which is a help for me and hopefully a bit for others at the same time… So I cheat by believing it does help others… :black_joker:

Correction, whoops: Having gotten a shoulder problem due to sleeping away from home, I just realized my WPI is 8 for limbs, plus 3 for spine = 11, and now +1 for shoulder would be 12.

First: A very creative night once again on my blog: 2 new ideas to enhance and speed up Yoga Nidra sleep, and 2 new acupressure ideas for acid and OAB/PBS, first I’ve tried, 2nd have looked, but not tried yet. Also, 5th, I remembered for itchy insect bites, but also larger areas, I - often/sometimes successfully - use a small piezoelectric click-device which I have lying next to my bed in one of my 5 night trigger treatment boxes (controversial, but better than any other idea I know). :partying_face: - Who knows, praps 1-2 of these 5 ideas might be of help to you too…

Update: That was 2 nights ago, now we’re on a 5-day trip away from home and my energy has crashed from 25% to 5% - hardly any moving, nausea, hardly any wi-fi so replies will come delayed this week…

Tried to search for “Fibromyalgia Doctors in Texas” yet? You’ll find another forum with pretty high quality doctor lists. Any help?

Skin might be another reason to look into MCAS as well as the allergies…

Dehydrated: My bladder behaves much better since I drink only soy milk (now almond milk) rather than water or tea. Might be like your alkaline water, never heard of that. Having a quick look however I see that some evidence exists that it does the opposite of what it may seem it actually increases stomach hyperacidity…

Skin lotions etc. not helping: Most usually just make it worse for me, just the rubbing. Avoiding all triggers has always been my mainstay, sometimes I can divert from that a bit.

Wondering how many alternative remedies you’ve tried for your tar shampoo? Many here: 12 Ways to Treat Psoriasis at Home and here: Psoriasis Natural Treatment Options

Full novel / patience / passion / wanting to talk about it all day… sounds like you’re talking about me! :smile_cat:

Not quite sure what happens “breaking down … when I keep talking about my illness”… is that crying? That’s different to me, so I’m unsure.
Sad, like the trauma bit. I’m lucky & privileged in that respect, but’d avoid anyone who’d done that to me. Friends I’d lose cos of that wouldn’t be friends. There’s quite a few contacts incl. job who I’ve had to minimize myself, but that to me isn’t loss, it’s a relief. If my body needs me to become a loner wolf then that’s what it takes. And I cherish good short times with old and current friends, best only 15-30 minutes.

Brilliant how you keep looking for and focusing the BRIGHT SIDES, stating that and hopefully that implementing it.

Wow, yes, that’s quite a bit of equipment, esp. as it’s not related to age and visible conditions - hard to see how anyone incl. yourself doesn’t get the picture. So good that you repeating it clarifies it and cuts thru the fog to it for you! Yep, of course I know that’s just a snippet. Probably better for us all that we don’t see everything a the same time!

Well, my wife deserves a holiday, so I agreed despite knowing better to come with her… so this is the worst day for months, I hope I’ll manage to adapt soon… But writing for distraction is good…

@JayCS Thank you again for your time and all the informational advice you been giving. I am sure all our fellow Fibro community is lost without people like you. Since I have been having this time off work going on almost a month now. I still feel extremely overwhelmed, but I just accept that is how it usually is and I have come to be friends with it lol. Anyway, I have been deeply reflecting a lot on everything and my journey with my health. I am definitely understanding that it’s just all about the Quality of life, point blank and period. :innocent: I have been noticing since I stopped working that my flare ups have not been as extreme, all my symptoms of course are always there and the pain. Still have my bad days, but the more I focus on managing the stress of everything it has not been as bad. However the fatigue is still pretty chronic and just trying my best to figure out my triggers and so on. I am just making my list of things to try and I intend to be my own lab rat lol and start this journey. After all that is the only way to know. I can’t give up and I will be diligently working on this. One step at a time. Hope you and your family, wife are doing well and keeping safe. May you have rest and relief. :grinning:

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