New here, need Help, confused about symptoms!


New member
Nov 6, 2023
Greetings everyone. Well, for the first time in my life, I have developed the worse health anxiety and I cant stand how hard it is to get out of this mess. So I find myself here hope to find some help and hope. Sorry for the long post but I am at a loss about my perplexing symptoms.

I am a 45 y/o male who was healthy and active up into about a year ago when I start having symptoms. There is no family history of any health disparities. Here is a timeline of symptoms and treatments.

In September of last year, I strained the lower left side of my neck and when doing stretches (especially tilting head to the right) I would develop pain over my left elbow. Pain would last a few minutes and resolve. I first thought this was strange but if I didn’t tilt head to right, no elbow pain. As days and weeks went on, I kept stretching neck but now there was pain not only over the elbow but to the back of my left hand that would at times radiate into my thumb, index, middle finger and if the pain was bad enough, those three fingers would seem very clumsy but would never drop anything. The strangest thing is on the days when I would have pain in elbow and hand and fingers and feel the clumsiness, I would go to bed and all the pain and finger issues would resolve. So needless to say I didn’t think anything of it and there has never been any numbness or tingling either. Over the next 12 months, the pain will start in my elbow, isolate between my ring and pinky finger and there is pain over the triceps and front of left shoulder. Again on bad days, left hand will feel clumsy and weak but I will/have never dropped anything and all symptoms will resolve by the next day. Update, over the past month or so, the hand pain has now become almost daily and both hand have become to feel like they are starting to feel stiff and cramp and now having the same muscle pain to the R forearm with some hand/finger pain

End of Feb this year, 2 days after doing some yard work, I woke up with this weird, how to describe it, pain and what felt like a muscle strain/swelling feeling to the front right thigh. Every time I would walk, my thigh would feel swollen, tight, and weak and the pain seemed to radiate directly down the outside and the middle of the thigh ending at the knee. Tried every known stretch to stretch out the quads and IT band but no amount of stretching would stop this strained muscle feeling and pain. About a 1.5 months after the onset of symptoms, my left thigh starting having the same stiffness/strain and weakness feeling but not as bad as my right and I started feeling tightness over the right calf. Again, no amount of stretching will stop the symptoms and there has never been any cramping to the calfs or quads. When stretching the muscles don’t ever feel tight or strained. Over the course of the past 8 months I have developed off and on fasciculations to both calfs and quads, upper arms and the right quad has been feeling weaker and weaker every week but I have never tripped or fallen since the onset of symptoms. The fasciculations seem to occur more to my right leg. My latest scare and increase in my health anxiety has been I have developed pain to the bottom on my right foot which I have never had since the onset of my symptoms. I hate this foot pain as it just absolutely scares me like something is progressing

In the middle of all trying to find answers as to why I was not getting symptom relief to my arms or legs accompanied with weakness and fasciculations, of course the path led to PLS/ASL. And the rabbit hole was dug and the anxiety started.

In July, started noticing the muscles only under the left side of my jaw feeling different than my right. It was a feeling inside my mouth like the floor of my mouth on the left side had dropped which seem to effect my tongue (seemed weak, burning feeling) which would affect my speech and swallowing to me like I was slurring my words and having difficulty getting words out and my swallowing seemed to be slower. My wife has always told me I don’t slur my words, no problems drinking or eating, no coughing with eating or drinking. I notice that the tongue issue seems to worsen in times of stress but will never fully resolve. When the tongue issues started, I noticed I would thrust my tongue towards my front teeth while sleeping so I thought I had strained the suprahyoid muscles.

As far as treatment: March 2023 I did PT on my neck and arm which did not do much, PT thought it was a facet issue in the neck. Tired dry needling which helped some but did not fully treat symptoms

May 2023, I had and EMG of both arms and legs which was clean. No bulbar muscles.

June had MRI of C-spine and Brain which was neg for any stenosis or MS.

Saw Neurologist in Aug who couldn’t give me any answers for my neck/arm/hand pain/weakness as well as my non improving right/left quad pain and weakness. Exam was clean, no hyper reflexes or clinical weakness. She told me to make sure to drink electrolytes and see a dentist for my tongue issue. When I asked her about my fear of ALS she said, “you don’t have any characteristics of ASL” and wanted to repeat the EMGs in 6 months. When I told her about my tongue and mouth issues and asked about doing an EMG on my bulbar muscles she said she didn’t see a need at this time but would refer me to a neuromuscular neurologist if I wanted, currently in the process of getting in with a neuromuscular neurologist at a local university medical clinic for a second opinion on all my symptoms.

Sept: Saw sports medicine MD who was stumped about my arm/had issues, thought it maybe radial cubital tunnel syndrome, tried dextrose injection to separate muscles from nerves, no improvements after 1 month. Have follow up next month

Saw ENT about tongue issues and he found nothing wrong. On exam he told me that he saw symmetric raising of the posterior tongue with clicking and he couldn’t explain my symptoms.

This month had full bloodwork up which was neg for Lyme, MG, RA, ANA, thyroid issues and all muscle inflammatory markers were neg. Also had MRI of L-spine which showed no change to my herniated disc at L5-S1 with S1 nerve root impingement on my L side only.

To be honest, none of my symptoms make any sense nor do they seem to fall into any MND category and I keep baffling specialists. My pain has always just felt like deep musculoskeletal and or joint pain. I really thought it was RA but again all my inflammation blood work has returned neg. I have never had any falls or dropping of objects since the onset of symptoms, no facial/tongue fasciculations, just continued pain/weakness/muscle tightness feeling to both quads (R>L) with walking (no symptoms with sitting) weird feeling of the muscles to the floor of my mouth left side. From all the research I have done on ALS, it usually doesn’t start as abrupt onset pain in the elbow or thigh pain. I have a repeat EMG in a couple of weeks but the personal reassurance has been hard. Could this be fibromyalgia? Please help!!
My pain has always just felt like deep musculoskeletal and or joint pain.

Could this be fibromyalgia?
Hi colombia801, and welcome! Yep, maybe, why not, but maybe not.
Have you tried a rheumatologist in the know about fibro yet?
Had a go at the online test on our main site?
Or the 2016 ACR criteria on which that is based?
Your anxiety will of course not be helping, so good to get more certitude, and good you're reaching out and getting 2nd opinions. The fibro criteria will help too, as will a fibro-knowledgeable doctor.
Hello JayCS, thank you for reaching out. No, I have not seen a RA doc just yet. I feel like that might be the next stop after the 2nd EMGs next week. My fever is, fibromyalgia doesn’t/wouldn’t be causing this weird mouth sensation or would it?
Hello JayCS, thank you for reaching out. No, I have not seen a RA doc just yet. I feel like that might be the next stop after the 2nd EMGs next week. My fever is, fibromyalgia doesn’t/wouldn’t be causing this weird mouth sensation or would it?
Hello colombia,

Fibromyalgia can cause many "weird" symptoms that can be baffling to you and to doctors. It is most often diagnosed when all of the tests for everything else have been done and come back negative.

None of us can say if you have fibro or not, however. It sounds as though you might, but unless all those tests are done you won't know for sure (that is, if any of us "know for sure" with this thing).

The strange mouth symptoms could be from fibro, or from something else. I strongly recommend that you do allergy tests, since allergies can develop at any time in life and might be causing that. If that doesn't disclose anything, I suggest going on an elimination diet. This means cutting out all of one thing for a month to see if that lessens any symptom. It has to be very meticulously done. For instance, if you decide to cut out sugar, you have to read all labels and not eat anything like salad dressing or sauce or anything else that has even a little bit of sugar in it. No change? Move on to something else, like all nightshade vegetables, or gluten, and so on. This is something I strongly recommend people do to see if it eases the pain and other symptoms of fibro, not just for allergy testing. Often a change in diet will have some effect.

Best of luck, and feel free to post here. We try to help each other and it's a safe space.
(A rheumatologist would check for far more than RA, of course...)
(One doc (a different one) did a spinal tap on me to exclude the worst stuff.)
might be the next stop after the 2nd EMGs next week
The first appointment with a rheumatologist here takes a 5-6 months wait, normally. Being an "impatient" patient, I seldom waited for one result before I went for others, cos that'll take ages, I fire(d) from all angles - neurologic, orthopedic, endocrine, rheumatologic, sleep lab, psychiatric, psychological, a centre for rare diseases, most with 2nd opinions or follow ups, 25 specialities, only urologic and allergic I postponed for a few months... In your case your anxiety may be a reason to get a rheum appointment as soon as possible? I always feel when I've phoned for an appointment I've done what I can, and can rest, no cause / need to worry.
this weird mouth sensation
Sounds muscular, and weird muscle problems are a part of fibro, so it's possible: it can affect any muscles - eyes, throat, bladder...
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SunKa, thank you for responding. I have an appt with a Neuromuscular neurologist here on the 22nd of Dec and and ENT on the 6th of Dec to see if they might have an answer. I will definitely take you advise and try eliminating certain foods and seeing if that maybe the problem. I will keep you in the loop as to how things good
WOW Jay, sounds like you saw every "ologist" under the sun! I am going to wait to see what the outcome is from my ENT, repeat EMGs and Neuromuscular appts before I go to RA. I know it can take a long time to see RA but I would rather have a long wait and know I don't have any other "major" issues going on.
sounds like you saw every "ologist" under the sun!
Hehe, yup, of the normal ones it's only a pneumonologist I haven't needed, cos lung tests the cardiologists did as well as my oxygen were fine. (As far as I got with their tests with my limited energy.)

And most of them were in the first year of my fibro full flare, too.

I'd wanted to skip oncology, but no, got some checking to do (and do have a spinal tumour, chance finding, but it's behaving itself).

And cos of my post vac I should go to an immunologist (was recommended by one of my allergists to do so), but they're too far away, let alone the 2 post vac clinics.

I know it can take a long time to see RA but I would rather have a long wait and know I don't have any other "major" issues going on.
Haven't got it yet... - you are anxious, but you want a long wait? 🤔
(Making sure you haven't got anything even more serious wouldn't preclude at least making an appt., or would it?)
So sorry to hear about the spinal tumor :cry: I am a Nurse practitioner and that has the be one of the worse parts of my job is to tell patients that they have some sort of incidental findings on either X-rays or CT that may or may not be life threatening. But happy to hear its "behaving"
To clarify my last sentence. I meat I know it takes a while to get in to RA but at the same time I can wait the 4-5 months it may take to see them easier knowing I don't have any sinister issues going on. Hope that makes better sense.