Does this sound like fibromyalgia to you?

[amaec]

Hey, friends. First of all, I’m sorry you have reason to be in this forum. I have been in pain for around five months and it’s been incredibly difficult so my heart goes out to those who are in it.

First of all, I’d like to disclose that I have severe health anxiety which I’m aware of. I am taking anxiety medication for this and attending weekly therapy sessions. For the past few weeks I have been terrified that I have als, however now that I’m out of panic attack mode and am able to think more clearly I am thinking fibromyalgia. (I’ve had muscle weakness that improved and pain and tingling which point away from it.) If you have time to read my story and share your thoughts, I would appreciate it.

I have always had hip and back pain that almost feels like my hip isn’t connected to my pelvis. This pain typically comes and goes but in august it started up and stuck around. I visited the doctor and the chiropractor, both of which told me I had sciatic nerve pain and that was it. In October it got worse quickly and to the point that I couldn’t walk. It improved after some physical therapy and I am back to my normal life. My muscle weakness is still here but has improved greatly. However, I’m now experiencing muscle tightness in my right side (the most affected.) I had an MRI Friday and the neurologist said that my spine looks good and what I’m experiencing is SI joint pain and that he recommends toughing it out if possible.

About six weeks ago, I started experiencing pain and weakness in my right shoulder and arm. It honestly felt like I had pulled something but it hasn’t gone away so I don’t think that is it. I’m also feeling some of this in my left arm now. My right is worse. What I’m feeling now is a burning pain in my bicep, muscle tension, and weakness. Today I took a nap with my son and we fell asleep with him on my arm and I woke up because it was tingling so badly.

I’ve also developed fasciculations (small painless muscle twitches) all over my body. As of Friday, I’ve started getting cold chills/shivers even when I’m not cold. (I’ve ordered a magnesium supplement.)

Today I’ve been having some strange poking pain. I won’t say stabbing because it doesn’t hurt that badly but it feels like someone is taking a sewing needle and poking me. I’ve also(in the last few months) had some leg/feet tingling, coldness, and numbness through out this. And my feet are cold very often.

What I’m experiencing most now is upper back pain and joint popping, shoulder and arm weakness and pain, muscle tightness, and tingling.
My mom had lupus, RA, scoliosis, copd, and fibromyalgia. My doctors have ruled out lumbar disc issues, lupus, and RA.

Does this sound like it could be fibromyalgia to you or sound similar to your story? I’ve been looking for answers for months and I’m struggling so bad mentally. I have an appointment with my PCP Tuesday and I’m praying to get some guidance. I just keep leaving appointments with more questions than I had before. Also, if you can think of anything I should ask her or mention, I’d appreciate it!

 

[Looby69]

Hi @amaec
I can relate with your symptoms 100% and the health anxiety that comes with it. Its a living hell.
My symptoms started Christmas 2020, I woke up one day and felt like I'd run a marathon (I hadnt)
So much to go into, I won't bore you with the detail. I've had visits to 3 seperate neurologists, a rheumatologist, a chiropractor, an orthopedic consultant as well as numerous visits with my own GP. I've had an MRI of neck, head and spine, all clear. EMG/NCS all clear ( although I never actually saw the results) I've had numerous bloods tested and a barium swallow (mild esophageal dismotility).
I've been fobbed off with Fibromyalgia, even though my symptoms are progressing. Like you I have body wide muscle twitching constantly, jerks, difficulty swallowing, cramps, muscle weakness, muscle loss in my thenar muscle, cracking and popping joints and tendons. I've had 2 "frozen shoulders" my 2nd one is just starting to thaw but both shoulders feel like they're coming out of the sockets.
Like you, I have been down the ALS rabbit hole. All of my symptoms point to it, but with so many "specialists" telling me otherwise and saying it's fibro, health anxiety causing muscle tension and just plain old general anxiety, I'm at a bit of a, "where do I turn to now" point.
I continue to lose muscle mass, I sometimes slur (nobody has commented) often when walking it feels like I'm walking on a mattress. I struggle more and more to unplug things, unscrew jars. My wrists constantly crack and pop. Even my pelvis now cracks. It's horrible, its painful and it's scary.
So whilst I have no answers to your concerns, all I can say is, I can kind of understand why you are questioning your diagnosis.

 

[sunkacola]

Greetings, @amaec , and welcome to the forum.

What you are describing could be fibromyalgia. the thing is, it also could be something else, and the only way to know for sure is to be tested for all of the other things that could be causing these symptoms. there's quite a list of them, and unless they are ruled out either with testing or with knowledge that you are not experiencing a symptom that is always found with one of them, you cannot know what is actually going on with you. Getting all the tests is a bit of a bore, but it is a good idea, because if you don't have fibro and instead have something else, your treatment might need to be entirely different.

I also want to address what you have said about health anxiety.
Many people don't realize that health anxiety can in itself cause physical illness. If not treated and managed, it can reach a level that causes physical symptoms when there's no actual physical cause for them. In the worst cases, this can turn into paranoia, and can even be fatal. I mention this because I want to suggest to you that the thing you need to focus on the most is getting that anxiety under control. Even if you don't have fibromyalgia, being that anxious can cause all of the symptoms of fibro. And if you do have fibromyalgia, anxiety is guaranteed to make it a lot worse.

About six weeks ago, I started experiencing pain and weakness in my right shoulder and arm. It honestly felt like I had pulled something but it hasn’t gone away so I don’t think that is it.

A pulled muscle can be painful for many weeks, so the fact that it has continued is not proof that it is not a pulled muscle. If you have a micro tear in the muscle or rotator cuff that can take months to heal.
The other symptoms you are mentioning could be caused by your body having to compensate for the injured portion, and therefore getting out of alignment themselves or getting over-strained.

Now, I am not saying you don't have fibro.......I don't know either way. But the best thing you can do for yourself is work very hard to eliminate the anxiety or at least get it well in hand, because no matter what it will make everything worse for you. And ask your doctor to test you for all of the things that could be causing what you are experiencing.
Best of luck, and let us know how things are going.

 

[sunkacola]

I have been down the ALS rabbit hole. All of my symptoms point to it, but with so many "specialists" telling me otherwise and saying it's fibro, health anxiety causing muscle tension and just plain old general anxiety, I'm at a bit of a, "where do I turn to now" point.

Hi Looby, have you read my post of advice? It would be a good starting point for where to turn now.
As you have already discovered, there's only so much that medical doctors can do for you. Eventually, we all reach the point where we have really very few options. One is to continue to try to find a doctor who can cure us or tell us what to do, and that leads only to frustration, because they do not have a treatment that is effective for everyone with fibro. One option is just to give up, more or less, and not really have a life (and sometimes we feel so tired that we just do that for a day or a week!), and one option is to delve deep into finding out what does help through experimentation. I always urge people to do the latter.

And, as I mentioned to amaec, getting your health anxiety under control needs to be a priority. Whatever you can do to manage this, I recommend you do, because no matter what else is going on with you physically having this anxiety is making it worse.

 

[Blitzy]

Welcome amaec , I read your story and yes, I too am very familiar with what you are going thru. My pain is daily, seems to spike at nite when I want to sleep...isnt that the way!. I have been unable to see a doctor who believes in fibromyalgia, but the hunt goes on. I suffered from RLS. (restless leg syndrom) for many years as my mother did, bless her soul, for yrs as well. But my body pain, and hurts all over, started after I shattered my elbow and went thru 2 very long intense surgeries, about 6 hrs long, each, to get my arm somewhat back to normal, a 3rd surgery ,3 yrs later, they had to go back in and take all the hardware out, as my body was rejecting it. Now 10 yrs later, I hurt more than ever some days, other days it backs off somewhat. The feeling of knife pokes and intense pins and needles, mostly in my feet, are so annoying and cause me grief, I rub and massage them several times a day for a minute of relief. I have fallen several times from intense pain hitting in my ankles. I takes me off guard and down I go. My list like so may others just goes on and on. I feel your pain,, just hang in there, and do what you can, while searching for a doc to listen to you. Seems we all wish for that. In the days to come, I have an appointment with a new doctor, one I found on my own, and can only hope he will help. Good Nite, and good LUCK!!

 

[BlueBells]

@amaec @Looby69 @Blitzy

I not sure why people join, leave one or two posts, and are never seen again. Please @amaec , come in and have a look, I'm sure it will help you.

I have fallen several times from intense pain hitting in my ankles. I takes me off guard and down I go.

I've been browsing around and found this thread. I was going to actually ask this question. I thought I'd injured my right ankle, and it came good, then hit me again, so I got a referral for an x-ray. I haven't done the x-ray yet, because I got home, and changed out of my glad rags, and my left ankle went! Worse than the right, and I actually crawled from the bedroom to the lounge.

Fortunately I had a bottle of water in the lounge, and I dragged myself onto the chair, was about an hour before the pain let me put weight on again. I figured, might be fibro, so is there a point in the x-ray.

Reading this thread, just maybe it is fibro. Generally it's fine, but the sudden pain, I've not fallen yet, but I know there is that possibility. So far, I've had a chair, wall or shopping trolley to hang onto

Thank you peoples for posting in this thread

 

[Looby69]

@BlueBells just because we're not prolific posters it doesn't mean we don't find the site helpful. I respond to threads that I feel are relatable. I know help is available, ultimately it's why and how we have found each other.

 

[BlueBells]

@BlueBells just because we're not prolific posters it doesn't mean we don't find the site helpful. I respond to threads that I feel are relatable. I know help is available, ultimately it's why and how we have found each other.

@Looby69

Hi, you misunderstood me. I was not referring to you nor @Blitzy at all.

Just so many , like @amaec join up, make one or two posts, and never return. I feel so disappointed for them that they miss the support offered.

I didn't mean to offend you.

 

[Looby69]

We all cope differently I guess.
No offence taken

 

[Blitzy]

Hi everyone, yes Im still hanging around in here and reading alot. I have not been well, so no mood to post a thing. Now with a new doc who listens and cares. Some new meds did not agree with me, so had to find others , and finally we found the right combination. What a relief it is, now I can sleep a full nite without waking in pain.
But in some necesary bloodwork up he found a problem, so Im preparing now to see a kidney specialist. Just another one to the list I guess. But rest assured we will get an answer and get it fixed. So chin up everyone there is hope out there, never stop trying, and yes we all have bad days, pain is my second name. Good nite for now.

 

[BlueBells]

@Blitzy

Hi everyone, yes Im still hanging around in here and reading alot. I have not been well, so no mood to post a thing.

I understand that, been doing a bit of that myself. I also find the opposite at times, where I cannot do what I need to, and it lowers frustration to chat here.

So pleased you've found a good doc, They seem to be a bit rare nowadays.

 

[specialk]

Looby69

hi I was interested in hearing more about your "frozen shoulder" as I waited for a few months and could not live with the pain nor lack of sleep any longer. I have visited my acupuncturist several times and it has helped quite a bit. I also deal with firbo altho not "officially" dx. But it rears its ugly head here and there and I think it's back now due to the stress of the shoulder. Talk about painful. I thought fibro was painful this is a whole other level. Of course didn't help when he said (after I asked him) what causes it, aging he says....Gee thx

 

[Lolalola]

I just joined this forum.
I have fibromyalgia flare ups, maybe autoimmune.
Definitely induced by stress. I need to manage the stress better.
I will be reading in this forum but won’t post very often.
I appreciate all the thoughts and helpfulness.

 

[SBee]

@Lolalola

I just wanted to say hello to you. Stress is very much a trigger to worsening fibromyalgia symptoms. I hope by reading through some of the threads on this forum it helps you find ways to help yourself, or feel supported in knowing others understand how it can feel for you.

My understanding ( I am no expert of course ) is that there is no definitive conclusion fibro is actually autoimmune,so if you feel there is any underlying cause to your health that is not connected directly to fibro you should ask a Dr for advice.

But do post anything as and when you feel you want to.

 

[sunkacola]

@SBee you are correct that there has at yet been no definitive conclusion among medical professionals that fibromyalgia is autoimmune in nature.

It is definitely one of the things that is being discussed, and occasionally someone writes a paper that says it definitely IS an autoimmune disorder. Then that paper goes on the internet and a bunch of people start saying it's been proven.....but so far it actually has not been proven or agreed by the medical establishment. Nor have they proven that it is neurological, or allergy or any other thing for certain. We are all still waiting for that. When the conclusion is finally found, I hope that it actually makes some difference to some of us in terms of treatment.