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Symptoms/Diagnosis Help?


#7

Hi, I actually decided to ask my pcp for a referral to see another rheum dr. The one i have now is ok. But she talks too fast and only knows about my pain. She doesnt give me time to talk about my other symptoms. Like she doesnt know my hands spasm or the tingling i get in my feet and hands or how i can sleep 9 hrs and wake up super exhausted. She is in and out of the room in less than 10 min. And thats only bc she gets on the computer to reorder my meds. I am told the new dr is very caring & nurturing type. And that she takes her time with patients and listens to their concerns. And thats what i like and need.
Good luck on your next appointment. :blush:


#8

I was diagnosed with rheumatoid arthritis before my diagnosis of fibro and now 3 rheumatologists later they have decided I don’t have RA just carry markers for it, I wonder if this is related to the fibro?


#9

Hi, I was diagnosed with RA first too. I took a whole lot of medications plus injected myself weekly with methotrexate. And then this year my rheum tells me I dont have rheumatoid arthritis she says its fibro. So now i take a whole other medication regime. Honestly what i was taking for rheumatoid arthritis helped more with pain than what i am on now. I know fibro is hard to diagnose but i wonder if its even harder bc some providers are not hearing what patients are saying. When i got diagnosed with fibro my dr didnt tell me what to expect or tell me what symptoms to look out for or even how to treat a flare… hell she didnt even tell me what a flare was. I am grateful to everyone here on this support group and to those who post on Pinterest and other types of social media bc if it werent for yall i wouldnt know alot of what i do now. I read and read about fibro when i got diagnosed but learned about fibro more on here than anywhere else.


#10

Do you also still show markers for RA? like I do? I wonder if there is any connection between the two


#11

Hi, no my RA markers were negative. The inflammation markers & alot of other labs were very high though. I think i read somewhere that there might be a connection between fibro & lupus, RA & trigeminal neuralgia…if i find where i read that i will post it


#12

Hi Colleen,

I know it’s been a while since your original post. I hope your appointment went well.

Your symptoms, at least the migrating pain with different types and intensity in all four quadrants of your body sound just like my fibro symptoms. Each individual has additional symptoms that may not be easily categorized. I will say that if you have any doubts use your energy and passion to look into everything now. I did about 8 different doctors and had the same conclusion - fibro, but also found I had hypothyroidism and PCOS as well.

Regarding your breathing, if you are on birth control I would recommend ruling out a PE. CT with contrast should do the trick.

The facial numbness and tingling, and eye floaters are strange symptoms. May want to see an ophthalmologist (MD) just to make sure everything is okay.

A rheumatologist is a great person to order the inflammatory markers and tests and to help rule out other conditions.

Fibromyalgia is really just the diagnosis of last resort, sadly.

Good luck! Let us know how things have gone.


#13

Hi there, for a few months I have been having these spasms in my hands. They are happening more frequently now. And there is this annoying pain that goes along with it. Sorta like restless leg pain. I asked the rheum dr that works in my clinic about it and he is thinking uit’s my meds causing the abnormal movement in my hands & not the fibro. Does anyone else have this annoying symptom?


#14

Hi Meow,

Thanks for your response!

I admire your perseverance to see 8 different doctors! Was there one that stood out from the rest? Did you tell the new doctors you saw that you had previously seen other doctors? Qualities in a physician you’d recommend one look out for?

Seeing a rheumatologist is a good idea. I’ve had lupus and RA ruled out so far.

I’m not on birth control. My breathing got better for quite a while, but it’s starting to act up again, mind you where I live there is smoke from wildfires every day, so it’s hard to tell what is causing it.

I started seeing another doctor as the other one I was seeing, although a kind person, wasn’t really interested in investigating my symptoms further. I started some medication he recommended for fibro but it didn’t help. Instead, I lost my appetite and began to get quite ill in my stomach.

I went to an optometrist and they couldn’t see any reason I would have floaters, but I still have them!

The new doctor, although not nearly as friendly, has so far sent me for a thyroid ultrasound, lyme disease test and an ultrasound of some swollen lymph nodes I have.

Have you ever had any swollen lymph nodes with your fibro? Apparently, it is quite common with CFS, which the other doctor also suspected I might have in conjunction with fibro. I also know swollen lymph nodes can be a sign of more sinister things, but I’m trying not to think of it too much.

What is the longest you’ve had pain for? I’ve had pain every single day for almost three months and nothing seems to help. I’ve tried ibuprofen, meds from the doctor, CBD oil…I’m really started to feel completely ground down by it.

My pain is quite bad up my neck, across my collarbone, in my shin area and forearms now. I also get strange headaches. It’s all super draining. It’s hard to think about something (anything) else when you’re always in pain.

I appreciate all of this support, it makes such a difference!


#15

Hi Andrea,

I don’t get spasm in my hands, but I feel spasms in my arms and legs at times. The muscle twitches for no obvious reason. Is this similar to what is happening to you?


#16

Yes, out of no where my hands make a quick sudden movement. But i can hold my hand out and tell my husband to watch how my hand moves and it won’t move at all. Makes me feel stupid actually. I dropped a glass once bc of it so now i hold my cups in between my arm and body. Im scared to just hold anything in just my hands. For a few days the movement was happening alot more frequently so my hands started hurting. Do you think its from the fibro or meds? How often does it happen to you?


#17

I was pretty honest with each physician about my other physician visits and diagnosis from them. And why I wanted to rule out everything. I was pretty thorough in exploring a variety of MDs and alternative practices like acupuncture and chiropractor. My favorite MD I only saw a few times, but she was a holistic MD/ allergist. She diagnosed my thyroid problem. She did allergy testing and what not, but was very kind and gentle. She spent time with me, answering all my questions. The 5 minute in and out physicians that write prescriptions outside the room and depend on the staff to educate are to be avoided. One even stopped assessing me, would just look at me, ask my symptoms and walk out.

Some MDs hear fibro and write you off. Others really have a passion for diagnosing correctly. They will run tests based on your symptoms and a journal is so important.

I did have an ultrasound of my thyroid and breasts, but not for lymph nodes per say. Mine feel fine.

I have pain every day as well. I can only remember a group of 3 days where I can say I was completely pain free. Every other day is a challenge. But I like to win, so I try to persevere. :wink:


#18

Hi Andrea,
I’m not sure. I’ve not been on meds for quite a while (two months almost, I believe) and I find it still happens from time to time. It’s never so bad that I fear I would drop anything or that it impedes my movements.
I’m really sorry you’re going through that, it sounds really hard.
Have you looked up the side effects to you medications to see if muscle spasms are listed?
I wonder if it might be worth going to your doctor for?


#19

Hi Meow,

A journal is a really good idea. I find I often have so many symptoms it’s hard to keep track of what is happening. I’m going to start doing that.

Where I am most clinics are on a fairly strict 10 minute appointment schedule. I often feel rushed. Even with my family dr, she’s very quick when she speaks and examines me.

I’m being sent to an ENT to look into my neck/throat issues. It also sounds like I may have one last blood test to do, a CRP test, then the dr basically said that if all of that is clear she doesn’t know what to do.

Have you found anything that helps with the pain? I asked my dr and she said all I can do is extra strength tylenol. I tried that last night and it didn’t work at all…

You have a really positive attitude regarding the pain! I find it so debilitating at times I just start crying…and I miss life before I was ill, of course.

I’ve yet to find that dr with a passion for diagnosing. I want to find them. Like a real life House or something :wink: The one I’m currently seeing is definitely better than the other dr, mind you.

Thanks for the suggestions. I’ve made an appointment with a chiropractor and am considering one with massage therapy, as well.

It’s really nice of you to respond. None of my friends or family have ever experienced anything like I am experiencing now and it can make me feel a little alone with my issues…or at least as though no one fully understand, despite how lovely they are, if that makes sense.


#20

Aww you are more than welcome. I rely on this site to feel that I am not alone and to continue “helping patients” since I cannot be bedside anymore. I know what you mean with the 10 minute appointments, it’s the worst and I have broken down crying when my doc just walks out the door without hearing me. It sounds like your doc has looked into everything so that is reassuring although it may feel like a bullet.

I have tried some really strong opioids, and they worked but I developed a tolerance, didn’t want to go to a higher dose so I weaned myself off. Tramadol is a synthetic opioid that works when I am having a hard time sleeping due to the pain. I take it a few times a week. I also have flexeril or cyclobenazeprine, which is a muscle relaxer that helps big time with my back pain and spasms. Cymbalta worked for me as did Elavil. They are both antidepressants and just boosted my neurotransmitters to relieve the constant pain.

Regarding positivity, it was not always that way, and I still have days where I want to not live, but it is more of a passing thought that I would have no regrets if I suddenly got in a crash or something. I just don’t want to suffer, and I know many people here feel that way. I have found that being focused on anything other than my pain, for my mental well being, is super important. I found some music that was super helpful for my “meditation.” Porecelain by Helen Jane Long, and lately I have enjoyed Ludovico Einaudi. You can check them out on YouTube, but I use Amazon Music. I also love fantasy novels, and they give me a world and characters I can escape to. And therapy for a few months helped me come to grips with the harder things.

I once attempted gluten free but that didn’t last long. It’s not like a diet where you can have a cheat day. I have also tried eating more veggies but they started going bad too fast so I don’t want to waste money.

Everything is worth a try. You never know what will help your body.


#21

I have had the same thing with breathing I thought I was having a heart attack. Rheumatologist said maybe reflux? Who knows ?


#22

Bedside- were you a medical professional at one point, Meow?
It is very kind of you to take the time to help people in this forum :slight_smile:

I’m really sorry you’ve had such bad experiences. I know how heartbreaking it can be to just want help and have no one willing to listen.

I really don’t understand the 10 minute appointment thing. In every job I’ve ever worked I always wanted to do the best I could to help people. Surely, most doctors must feel the same way? Then why dismiss people and rush them out the door?

So far, I’ve been misdiagnosed with the flu, back injury and had one doctor theorize I must have experienced some sort of trauma that started my pain but refused to believe it had an actual real, anatomical basis. It’s just crazy to me.

My new doctor refuses to prescribe any pain relief until she’s certain of what is causing my pain. I’m not sure how to feel about that. I’ve upped my CBD oil intake and it seems to have taken some of the edge off.
Sadly, the referral to the pain clinic from the previous doctor appears to have never reached the pain clinic, so I have to try to get a referral from the new doctor…

Do you get a lot of stiffness in your neck? Mine is primarily in the front of my neck and it can feel very uncomfortable to chew and turn my neck or even nod at times. I’ve also started to get a hoarse voice if I’ve been talking to people consistently throughout the day.

Sometimes I buy frozen veggies or cans of soup with a lot of vegetables in them if I know there’s a good chance I’ll feel too ill to make regular meals. I’m not sure if you’ve tried that? Then I just throw the different frozen veggies into whatever I’m making. I used to make quite elaborate, planned meals but since I’ve become ill I’ve not had the energy.

Do you find any sort of exercise that helps your symptoms but doesn’t cause a lot of pain? I used to walk an hour and a half a day in addition to a 30 minute run. It’s been really hard to reconcile with myself that I can’t do those sorts of things anymore. I still walk 30 mins to an hour a day, but it’s very leisurely.

I think a lot of my sadness and anxiety comes from still not being officially diagnosed. I feel as though there is this question mark hanging over me and at times I get quite frightened that I may be terminally ill or something, even though my GP has reassured me this is unlikely. At this point I would really welcome a confident, solid diagnosis of fibromyalgia so I can just ease my worries and get on with pain management and physiotherapy…have something to focus my energy on in a way that can lead to a better quality of life.

Additionally, I miss the everyday things I was previously doing (finishing my degree, writing, working, playing sports with my son)

Thank you for the music recommendations!


#23

Yes! It can be so scary. That’s interesting. I’m seeing an ENT and maybe I’ll ask if reflux could be part of it. Thanks!


#24

Hi, Someone mentioned they had floaters in their eyes. I have had them for several years. They are proteins that form in the gel part of your eye. Several opthamalogists have told me this happens to some people and not to worry. I hope this information helps.


#25

Hi,
I was a certified Ophthalmology technician and yes a lot of people do have floaters. Eye floaters can be clumpy or stringy, light or dark. They are caused by clumps or specks of undissolved vitreous gel material floating in the dissolved gel-like fluid (vitreous) in the back of the eye, which cast shadows on the retina when light enters the eye. This is also called PVD Post Vitreous detachment, this happens especially when you are getting older and or are nearsighted. However you should always have this checked especially if you have any signs of flashing lights as PVD’s are not serious but you always want to make sure it’s not a torn or detached retina.


#26

Thanks for your support I was just diagnosed with Fibromyalgia at Mayo Clinic. It all makes sense to me now! After years of going from all the MD’s I feel I have hope to move forward and understand that this has to do with my brain and Central Sensitization. I have some other auto immune stuff going on so I am waiting to hear back from the Mayo docs to see if I can try Cymbalta. I’m so glad it worked for you because I don’t know anyone else who took Cymbalta for fibro. Thanks!