Are these Fibro or something else?

Symptoms & Treatments
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I know that Fibro affect each person differently and there are no hard and fast “rules” when it comes to symptoms, but I am questioning a few things.

Does Fibro cause or are these things a sign of Fibro? Or do I have something else going on?

Muscle stiffness - used to be mainly my lower back, shoulders and knees. In the last few months to a year I have been having more trouble with my arms and hands as well and the intensity is progressing.

Muscle weakness - I always blamed my hands on the tendonitis or maybe arthritis. Here lately though I am noticing it more and more in my arms and legs too - like it takes more effort to use them or like they have weights attached to them. I am also seeing an increase in the frequency with which my hands, shoulders, legs, etc give out.

Numbness/tingling - constant in my left hand, though intensity varies. Generally affects my hands from the middle finger over to my little finger, though it can affect the whole hand.

Dizzy/lightheaded - sometimes a more mild, general lightheadedness, more often it is a “room spinning grab for something quick” dizziness. Normal, if not annoying, when it is the result of standing up too quickly; unnerving when it occurs at other times with no obvious cause.

Unsteady/balance issues - sometimes related to the above dizziness, but most often an issue all it’s own. Some days are better than others, but here too there has been a progression. I started out using my cane because of the pain issues, now I continue as a way to provide stability.

Bladder control issues - might be a bit TMI, sorry. Annoying at best, very embarrassing at worst. And, yes, there has been a disheartening progression here too.

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Pics & Memes that visualize fibromyalgia and other invisible chronic pain illnesses
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“No worry” :smirk_cat: - these are all pretty much core symptoms of fibro, the first 2 belong to its definition, the other 4 definitely belong to it, but also to other chronic pain illnesses. And as opposed to many other symptoms (esp. specific joints paining) they all 6 will be harder ones to get under control, probably because they are generalized (‘all over’), except the tingling in your left hand (but you then write ‘my hands’, so partly also).
On the other hand like all “fibro”-symptoms should be checked by the various specialists, in your case rheums for 1 + 2, neuro for 1-6 and uro for 6. Been there, done that, nothing found.

Muscle stiffness is what I’m pinpointing in my blog at the mo JayCS’s Fibro Blog (the numbers are the different places of the stiffness). It’s my 2nd longest symptom after tiredness. Coming to believe that it’s (a shortening of?) the tendons above and below all of the big joints when I stay in any one position for longer. That will maybe put it into your tendonitis box. My 2nd rheum while diagnosing fibro also wanted to describe it as polyinsertionstendomyopathy.

Muscle weakness is what I often call exhaustability, because they often have a flash-in-the-pan-energy for 2-3 minutes, haven’t heard of anyone else with that. But the muscle weakness that then comes on is for me is in the muscles, not the tendons. It was great after some of the cryotherapy in the summer and still is after cryotherapy plus TCM/acupressure (for 4-30h), and all the time now I’m not having to work.

Numbness & tingling is our nerves, but probably caused by something in that hand/wrist, perhaps also muscles or tendons. I put physios on that, esp. osteopathy or perhaps try a little gentle massaging, looking for trigger points near there.

Dizziness & lightheadedness could of course come from meds, I can’t remember if you take some. I’d also think that it’s got to do with the disbalance, similar cause. Quite a few physios etc. keep telling me that the neck-muscles are particularly important because they are the bottleneck between head and body. And can and should thus be treated regularly, again by osteopaths, chiropractors. Even if it’s something in the equilibrium organ itself that’d be harder to get at.

Bladder - Generally ‘bladder problems’ are often named secondary part of fibro, but every time I try to find out what exactly, YMMV, as so often. I’m also been having a control problem for a few weeks off and on. Unsure if muscle, incl. Kegel, exercises have helped, been OK again for a few months. And then there’s my pain before p, which no-one can explain, obviously muscular, but better when stretching my body backwards during.

Fibromyalgia does mean pain of the muscle fibre, so the connections are clear. It just needs to be sorted out if anything else is there too - most striking case: my tooth problems which I thought were fibro/muscle/nerve/tenseness problems.

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JayCS -

I don’t take anything right now, medication wise, so I know the dizziness is not related to that.

I am assuming it is all Fibro related but had someone question if it was maybe MS - someone they were close to had recently been diagnosed with it and so obviously forefront of their thinking. They admitted they really didn’t know, but were just trying to be helpful.

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Ah, OK, I agree that all 6 of these symptoms could also be MS. And it can also be both. In my case some of my typical fibro-symptoms could be from Hashimoto or (a preform of) Sjögren’s, both autoimmune. That’s one of the things I meant with going to a neurologist. For MS he’d do an MRI and a spinal tap, bloods don’t help.
(In my case I’d done an MRI anyway because of my 1st rheums suspicion of ankylosis spondylitis, which “only” found a seemlingly harmless spinal tumor. And one of my psychiatrists/neurologists did a spinal tap for several diseases incl. MS - this can be painful or easy, so it’s good to prepare and relax before.)

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Yea, see that is the problem . . . I have severe anxiety when it comes to needles.

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Oh dear, Catch 22. That would also be a problem with most neurological tests, too.
A spinal tap seems possible with sedation here, but apparently a bit risky, so docs aren’t keen on doing it.
Would just an MRI be OK? That seems to show MS-imflammations to a fairly high percentage, 85%.
Behavioral therapy would be the way out, for diagnosis and therapy of MS, if the possibility
increases…

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Hey, I’m a dork. Ignore this post. I’ll re-post…

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Hi, dear Struggling!
Just wondering - Do you see your doctor at least once a year to discuss both ongoing and new health issues? A visit may be in order… :purple_heart:

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Not really. I had a PCP I was seeing every few months for the depression and anxiety, but he blew off any and all physical issues as being either “just the depression” or “just severe arthritis - learn to live with it”. That was the easy way out, the easy answer. He did finally do a blood test for RA, which he said was negative, but he would not do anything else.

I was supposed to go back and see him a couple of months ago to get meds refilled but I couldn’t see the point in spending $100 just to have him pop into the room for less than 5 minutes and brush me off and I couldn’t swing the office visit anyway (I don’t have insurance) and they didn’t see the need to work with me on the cost since I was out of county. The only option they would give me was to wean off the meds, so I did. Found out end of the year that I am now without a doctor, as he abruptly left and a replacement won’t be coming till next fall or something.

I am hoping to use part of my stimulus payment to get in to see a different doctor (different clinic, in a different town as well). Hopefully I can at least get started on the meds again for the depression and anxiety. And I am checking into some insurance (and possibly disability eventually) so maybe I can eventually get some answers other than arthritis - live with it. Would be nice to have some decent answers. After 15 years of dealing with all the pain, fatigue, stiffness and all the rest of it I am getting really tired of getting brushed off by doctors and trying to live with it with no help, no support, nothing.

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Oh wow, that’s awful! Well, good riddance to your old doc! Maybe you can check out references for the new place and find someone that actually cares about their patients! I sure hope so :purple_heart: :purple_heart: :purple_heart: :purple_heart: :purple_heart:

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Re symptoms, a while back on this site, I found a list of 100 fibromyalgia symptoms. I was diagnosed with FMS in 1991 and over the years have had all but 5 of the symptoms listed. Not all at once, of course, but still…

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Thanks for the inspiration, @Suzanne. I’d only seen a German list once of 70 symptoms.

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