Hi Mary, one of my better doctors suggested that before I assume symptoms were caused by my fibro, consider what else they could be caused by. For instance, the constant sniffling could be hay fever or other allergies, the headaches could be eye strain or stress. The advantage to doing this is by isolating other causes, you can treat them directly, whereas the medications we take for fibro are complex and adjusting them can’t be done lightly.
Katya, believe me, I have been checked for everything. I use to go to the doctor when I single issues like soar throat, headaches, stomach issues, sciatica, painful feet and more. I would go thru every test, procedure (like colonoscopy) there was and I always got the same answer. Everything looks good. I have really good doctors, too. I just don’t know what else they could do. In fact, I did go in a couple months ago with these current issues. Nothing really done and he said he’d see me in June. So I give up!
I definitely understand this feeling. Although, for the last few months, this symptom has not been as prevalent. It was my main complaint for years.
Justexisting - I’d be worried that hopelessness, not wanting to do anything or wanting to stop it all wd increase if you’d stop the Venlafaxine?! Or wd you use alternatives like Duloxetine and/or CBT? :-
If you don’t like baths and they don’t relax you anyway - do you use other types of magnesium other than the sulfate (the Epsom salt)? The help of baths isn’t proven, so probably primarily subjective, whereas intake of magnesium is.
Not wanting to exercise sounds more like you need more inner support and not that you are not able to. Of course housework and job are a lot of exercise. If you did less of that and more sporty exercise or something else that’s good for yourself, wd you feel better, wd that be possible? What’d happen to your feelings if you cd just stop the housework and your job, bc you are sick, ‘have the flu’.
Justexisting - is there anything good that you could do for yourself to make yourself happy? To self-care, to self-comfort, to make you smile or even laugh now and then? Anything you used to do but have ‘forgotten’, lost contact to? Something that may need to be adapted. Or is there anything new possible, some good moments you’ve had which you might increase bit by bit? (In really bad times I immediately enjoy moments of a second of not having pain, not thinking about past or future, just here-and-now, if need be I keep a good-moment-diary. Writing here helps me, comforts me.)
@all I correct defining flu-like symptoms as the following or how wd you adjust it?:
heaviness, ache all over, fatigue, more pains, rest need, sleep need, sleep long. With or without fever-feeling, clotted/runny nose, headaches/migraines.
@Katya: Always a good thought, agreed, thanks for the reminder! I have so many of my symptoms down, esp. pains. Docs or meds weren’t helpful tho, it was pinpointing them with diaries, analyzing & finding ways to prevent or alleviate them physically or naturally.
The fever-feeling is a nice example, even tho it’s one that @Justexisting doesn’t have. I always grouped it more with the Ache, something autoimmune, and so thought I had to wash it away with cryotherapy or cold showering which does help for a time for that and the Ache too. Now by comparing it to tiredness I’ve realized it’s telling me to get a nap quick.
Unfortunately sleep along with Ache and exhaustion remain my main problems, and like with @Justexisting I’ve had “everything” tested for, incl. spinal tap & autoimmune. Hoping GABA plus remains the answer, like it’s been seeming for 6 days now, but I’m still sleeping 10h which isn’t where I ought to be…
For me its the heavy feeling. Everything aches. Hurts to lift my arms and always feeling exhausted. Its all in the body, physical, minus the fever and headaches.
I tried going off Venlafaxine and it was not pretty. Anxiety really took over as I was weaining off. Dicided I am a person that needs to be on it.
I do take magnesium supplements. Magnesium Malate
My job is the only thing that gets me out of the house and socializing. I thank God for this job. I also need the money to stay in my home. I only work about 16-22 hours a week and it is not a stressful job. There is a small work out center at my work. Problem is that I start early and when I am done, I am to fatigue to go use it. Everyday I say I’m going to force myself tomorrow. Then when tomorrow comes I just can’t do it. All I see is my bed…
Everything that made me happy was physical. I was an athlete, high school, college and after. Once all my problems started that ended. I had always been very social. The one with all the friends that the friends would call on. Friends don’t call anymore. Being wanted and needed I guess I miss. I’m 50. Single/divorced and an empty nester.
Yup, that’s what I thought with Venlafaxine. Counselling you’ve probably tried too.
Arms - same here; my acupressurist is working on it, tough job.
Magnesium malate: Same here, cos of hyperacidity/IBSD.
Wow, 16-22h/wk! No wonder you’re struggling!
But it sounds as if your job does make you happy some extent, just it’s too much or too much in one go?
I wdn’t force doing a workout after work, I doubt that’d make it better, rather worse - it would me, I’d need at least a break, if at all. Could you try a 4-5 minute workout before work, without using the workout center, like this: https://youtu.be/U6etLKswjq8? That’s what I manage at the moment - but not when I’m in the fullest flare.
Can you go to bed earlier and get up earlier and do something nice before work?
Could you take a break at work and praps even lie down regularly, rather work longer, in several shifts, but still have more of your day? That’s the only way I can.
Just thinkin… - if you can’t take these gently meant suggestions at the moment, just ignore me…
You crack me up! Where on Earth did you find that exercise video? I can manage that in the morning.
Do you have neck issues? I’ve had a lot of bothersome neck pain. I know it leads back to a car accident when I was 16 and a few years ago an MRI that showed degeneration/arthritis setting in. Not sure what to do about that. Trying to afford all this crap sucks too. I’m so doctored out! Especially most times my answer is they can not find anything. Ugh!
Thanks for your great replies. Been a LONG time since I talked about my issues with any one. Appreciate it! Hugs!
So glad to hear
Actually I read about it first The Scientific 7-Minute Workout - The New York Times, and then thought that’s neat, I’ll try it every day. 2nd day I forgot , but at the moment I really am doing it every day. I looked for examples on youtube, and found this nice and short and the music on it motivating, but you can get the same vid without music on youtube too, or just turn it down of course.
Yep, neck here too - osteochondrosis a doc saw on my scans (MRI, scintigram and x-rays).
I joined a neck/back exercise group 6x (pic #11+12 here humiliating not being able to keep up with 70/80-year-olds, so I started doing a short workout before to boost my ego), found some neck exercises on my yoga DVD and my acupressurist showed me neck exercises too the other week. They’re all similar, stretching your neck in all ways possible: up down, left right, up left down right diagonally, ear to shoulder. I now do them quickly when necessary, e.g. after lying down a long time, on my bike trying to turn my head and even started doing them at night, which works too.
Yup - I humour the docs once in a while, telling them what I’m already doing, occasionally they do me a small service by having a new idea… - which mainly backfires, the last was melatonin for instance which made me drowsy-sick for one month. But mainly they’re just there to make sure that nothing dangerous is going on. The person who has the most ideas for anything and everything is my acupressurist, and gives me “homework” all round, whether it’s palpating my belly (which has improved my bladder pain), rubbing my hands with olive oil and sugar (which I don’t like doing much yet), imagining to cut off any thoughts & pains with scissors or a chainsaw (which does help a bit at night) or going out in the sun for half an hour a day (which I do anyway). Usually about 3 new ideas a week. Other ideas and checks on them are from people on the web. What has helped me 5x more than the docs are suggestions of friends… (cryotherapy, cold showering, breath-holding and yoga…)
Going out in the sun for a little bit each day is good for your bod & mind!
Hehe, the “sun” has now got a favourable double mention in the treatments reference section
I stopped going to doctors now because there is nothing else anyone can do. Hoping for something new that is scientifically proven in my life time. I wish I could afford an acupuncture. I do know dry needling helped my neck and shoulders. Problem is with all of it… you have to keep going.
Improve your bladder? I get bladder pain, but it cycles. It may come on for a day or two weeks and then go away for months or weeks. Crazy! Never been able to get a diagnosis. But have had colonoscopies with biopsies and nothing wrong. Tested for Gluten allergy, negative. I looked up IC, intersticial cystitis and those are the symptoms, but people diagnosed have the symptoms and treat, but mine only flare??? I just have the strangest things happen in my body. Can’t remember if I mentioned I had Lyme for 12 years before it was finally diagnosed. That was fun, too. All the symptoms, but every doctor said there is nothing wrong! My life story. I’m afraid I’ll have something deadly and I’ll blow it off.
This has really helped me, talking with you. Thank you SO much for reaching out! I see your in Germany. I could really use a vacation. Maybe I’ll come visit! Take care and God bless!
thanks! Yeah, Germany is definitely worth a visit! Glad to see you here…
Oh dear, Lyme, and this all taking so long to find it out…
No wonder you’ve stopped going to docs, I’m not going much either, but cardiovascular still needs checking, my GP sent me to an endocrinologist, but everything was OK and “my nails” & warts “sent” me to a derm, but they were all pretty OK too…
I also checked interstitial cystitis, but it doesn’t quite fit. Interestingly GABA is improving everything, including how often I have to go: I can now drink as much as I want in the evenings and still only have to get up only 1x from that, 2-3x altogether. Soy drink at least - haven’t tried more watery drinks yet. I think that pain’s got a bit better too, but I’ve been palpating my belly as well, so it might be that. Just hoping it’s not going to habituate too soon…
Nice to hear from you! I forget we are on a site I speak to you like I am personally emailing, lol!
The IC: So you had pain too? Does it cycle like mine, too? I had several appointments to see a urologist, but by the time the appointment came, my symptoms were gone. When I have the symptoms I get up twice a night to pee. When I don’t its just once. Do you think this is Fibromyalgia? I don’t know if I should still try to see a Urologist. There is no treatment for IC. I saw there is just a medication and I don’t need any more of that! You mentioned GABA. I have that in my arsenal, but currently not taking. How did you hear of it for this condition? Maybe I should start taking it, again?
Have a beautiful day!
Hiya Yep, and why not? - just using real names is may be a problem…
Well my bladder pain is strange: It comes before I pee, not during. So it’s fairly clear from the start that it’s not inflammatory, confirmed by repeated tests.
It started with my fibro-full flare, so I think it is a muscular problem. I also believe my type of fibro generally is muscular, on the surface anyway. With tendons, nerves involved. That GABA has decreased it, supports it & my fibro being muscular. GABA is a inhibitory neurotransmitter that decreases excitability & muscle tone. Before GABA it hurt 80% of the time, with a pain of 2-5; with GABA it hurts less often & less strong, I think 40% of the time, with a pain of 1-2.
When did yours start, was that point in time connected to other fibro-type-problems?
That’s how I’d decide if it is connected to the fibro. Apart from that I always double-check everything, even if I believe it is connected, because every little information demystifies a bit.
So that’s why I would and I do definitely ask a urologist to check everything s:he can.
I agree if the only thing anyone has for IC is meds - then the diagnosis isn’t helpful. But during a cystoscopy the docs can do something to improve the problems, take out Hunner’s lesions or ulcers and remove fissures of the mucous membranes. Also there are many foods which influence them - maybe the cause of your “cycles” - you’ve eaten something which has irritated your bladder, like - possibly - nightshades, citrus, meat-sorts, dairy - seems like anything which can irritate the gut or anything else can irritate the bladder too. https://www.ic-today.com/wp-content/uploads/Anti-Inflammatory-Food-Chart-for-Interstitial-Cystitis.pdf - This overview only shows possibilities to test according other things I’ve read. I have to avoid a lot of these anyway, cos of GI & cardiovascular reasons - more isn’t necessary, but not possible either.
OTOH I’m wondering why you are thinking about IC if you only have to get up 1-2x per night, and I & my urologist’ve decided it’s not that, altho I (before GABA) had to pee 5-8x per night… Makes me think yours is ‘only’ fibro. In my case it won’t be IC because the pain only comes then, not at any other time.
In my case if it cycles then more like hourly, not days or weeks. And it’s usually there, whilst in your case it seems it’s usually not. Might still be somewhat periodic tho…
Since I have to pee less frequently day & night since GABA, I’d even say it’s completely normal now, it does seem somehow connected to the pain. But the frequency is normal, even if I drink quite a bit in the evenings, whilst the pain is still there a bit.
GABA I came across because it is touted by med-intolerant fibromites, altho docs used to say it can’t help. So I tried it mainly for sleep & muscles, and in the process have realized it is helping much more than that, esp. stiffness and energy/fatigue. It helping my bladder too is just a gratefully received chance finding…
If you feel & think your muscles may be a part of your fibro, then I definitely would try it.
Morning- Here in Wisconsin, 6:30am.
I am going to try GABA. Especially since I already have it, because my Fibro is 100% muscular and nerves!! Gabapentin has helped a little, especially when my Sciatica acts up.
How do you take your GABA? When and how much? I know that doesn’t mean that its right for me, I’m just researching.
Good ehm… evening… (started writing in the early afternoon tho… )
I’m taking 750mg 30 mins before sleeping. After 2x300mg Magnesium (and 20mg of atorvastatin ) and together with 2x330mg glutamic acid and 2x290mg passionflower=passiflora. One study says combine it with 5-HTP.
There are several very different types of dosage I’ve read: 3-4x200-650mg for stress / anxiety, 250-1000mg in the evenings for sleep. Or for anxiety 100mg sublingually and increase from there, as it may habituate. One says don’t take it at all, because if it helps it means you have a leaky brain. But one of the main proponents of that in 2020 conceded that’s just a theory.
The weekend not being that good I wanted to change something, so instead of going even higher than 750mg I decided to decrease the glutamic acid to 1x330mg, and today was really good again. I’ll keep tto hat a few days and then maybe stop it completely, because it’s not mentioned often. I’d rather add 5-HTP which I still have some of, or ashwagandha, even tho it’s a nightshade, which is why I haven’t used it yet after having bought it (as well as being unsure if it’s OK for my thyroid).
As to the leaky brain theory: As GABA-molecules are far bigger than the nano-particles the BBB normally allows thru either there is another mechanism for it, meaning the brain isn’t generally leaky, or it doesn’t work via the BBB. Any way I don’t care - this is the first substance I’ve tried that helps a lot (stiffness, sleep, awakeness, energy, exhaustion, Ache, bladder pain & pee frequency) and doesn’t harm (side effects only 3-5 days).
Oh, on one of the pages that’s helping a lot I’ve found IC/bladder/IBS, however not very clearly: GABA Archives - everywomanover29
Also on that page a tight throat problem is mentioned, so I wonder if it will help my occasional esophagus block… Lower down on the page she says: ‘Everyone’s different, so start low and try.’ She’s the one who recommends opening capsules and using it sublingually.
She also “successfully” challenged the doc who claims it proves a leaky brain: The Anxiety Summit - GABA: Blood brain barrier controversy, concerns, best forms and how to do a trial for eliminating anxiety - everywomanover29
Hi JE! Have you actually started using the GABA?
After 30 days, it’s still working pretty well for me in 10 areas, JayCS’s Fibro Blog (see summary-thread ∑) - #338 by JayCS. What I’m still trying to improve is that I am still up once for 1-2h every night again, but mainly due to stomach/gut.
I’m playing around with what I take with it. I’ve left the glutamic acid now, as that actually does the opposite. I’m keeping the magnesium. I’m running out of passionflower, but will order it again. I tried ashwagandha once, which burnt my stomach and gut as it’s a nightshade. And am now adding the 5-HTP I mentioned above.
I did start the gaba, but only a few days ago. I got really sick. Covid was negative. A nasty flu which was horrible with the Fibromyalgia. Anyway, too early to tell with the gaba.
I can handle any pain. Infact I can’t remember ever NOT having pain. Its my normal. Its the fatigue that disabled me. No energy or want to do anything. I live alone now, empty nester. I am off of work Friday noon thru Tuesday morning. I don’t leave my house and spend 90% of that time in bed. This is what I want to fix. I’ve been like this for so long and I have no hope. Hence the name Just Existing.
Hope this finds you doing ok. Take care!