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Dealing with Chronic Pain and Uncertainty

Kazoo0416

722d

Was in the hospital for a week back in October after having severe full body pain and muscle weakness to the point I couldn’t walk. (I had been experiencing his for a while, but it got significantly worse during this time) I had a lot of different symptoms but those were the main ones that brought me in. After running some blood tests and observing me they couldn’t figure anything and just said I had fibromyalgia and sent me home. The symptoms decreased a few weeks after getting sent home back to my normal amount of pain so I just kind of dealt with it. But now it’s flaring up again and I’m starting to pay closer attention to symptoms other than the pain. The pain is really bad again but the weakness in my legs is worse than last time to the point where I’m considering getting a mobility aide. Also once in a while during my flareup I’m getting like electrical shocks and muscle spasms up my right arm and shoulder. My vision keeps getting really blurry and I keep seeing double, but these symptoms seem to come and go. I just got my eyes checked like a month ago and everything is fine so I find it really weird. I’m super duper fatigued and don’t feel rested even if I have 12 hours of sleep. Also I’m really dizzy a lot and keep getting vertigo, might be from the fatigue though. I would usually contribute these things to the fibro and just move on, but my family keeps telling me to go to another doctor and tell them about these other symptoms because apparently we have multiple sclerosis in our family and these symptoms are more related to that vs the fibro.

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Hypotension

Pneumonia

Orthostatic hypotension

Fibromyalgia (FM)

Arteritis, Vasculitis

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Top reply
    • Lew_Bear

      720d

      @Kazoo0416 sometimes my pots also acts up when I’m sitting, laying down is the only way to get it to calm down… I think vertigo and weakness are also symptoms of CFS/ME, but most doctors have no idea how to tell the difference between that and fibromyalgia

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    • misunderstood

      721d

      Your describing me everyday.

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    • Lew_Bear

      722d

      This sounds very similar to what I went through about a year ago - my main two diagnoses since have been fibromyalgia and POTS plus now my doctors are considering MCAS. Do you only have the weakness in your legs & vertigo when you’re standing?

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      • Kazoo0416

        722d

        @Lew_Bear when they tested me in the hospital for POTS using the tilt table thing I tested positive, but they said it could be due to a medication and just took me off of that.

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      • Kazoo0416

        722d

        @Lew_Bear I have weakness everywhere, but it affects my legs the most probably because I’m using them the most. I have vertigo when I’m standing but sometimes I get it when I’m just sitting minding my business lol.

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        • Lew_Bear

          720d

          @Kazoo0416 sometimes my pots also acts up when I’m sitting, laying down is the only way to get it to calm down… I think vertigo and weakness are also symptoms of CFS/ME, but most doctors have no idea how to tell the difference between that and fibromyalgia

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    • JustRachelle

      722d

      This is what I go through on the daily.. my doctor sent me to a neurologist to check for MS but I don’t have it.. they just look for lesions on your brain.. no lesions no ms.. even though you every simple.. because every simple without the lesions is fibromyalgia.. hope this makes sense

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      • Kazoo0416

        722d

        @JustRachelle that makes sense. I’ve never had a brain scan or anything check for lesions so for now it’s just one of the many possibilities

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    • wise

      722d

      it does honestly sound like a fibro flare to me, I get the same symptoms, but I'm also in the process of being evaluated for MS 🙃 I guess the distinguishing factor would be whether you're experiencing vertigo (neurological issue unrelated to fatigue) or orthostatic hypotension (can be caused or exacerbated by fatigue and sleep deprivation)

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      • Kazoo0416

        722d

        @wise oh and I was in the process of getting evaluated for orthostatic hypotension, but just stopped going due to financial difficulties. Sorry I commented in too parts, my brain is everywhere today. It probably is just fibromyalgia but my family put the idea that it was MS or another neurological issue in my head and now I can’t stop thinking about it.

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        • Kazoo0416

          722d

          @Kazoo0416 I should add that I don’t personally think I have MS, though I don’t think I have fibro either. I believe this stems more so from an autoimmune issue like lupus. The one thing that makes me think it might be lupus is when I was in the hospital I had a chest X-ray and it showed I had inflammation in the lungs similar to that of pneumonia, but they tested me for every viral and bacterial infection they could think of and all of them came back negative. And considering lupus can inflame and affect your organs maybe that’s why there was so much lung inflammation?

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      • Kazoo0416

        722d

        @wise sounds like we have a bit in common lol. Yea I experience vertigo a lot. It happens the most when I’m walking but sometimes happens when I’m just sitting.

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☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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