Is this fybro? Pain and tingling all over my body…

[Andrew_1993]

Hello there,

First time posting, no idea where to go. I have problems for almost 5 years, altough i had problems with panic attacks and anxiety before. It started on new years Eve. I wasnt feeling realy well, sick, nausea, couldnt sleep, but i was attributing it to drinking alcohol and being tired. But many days later it didnt went away. It just sort of stuck with me. During that time i was running a lot and started to do cold showers in the morning. I will never forget one morning that during the cold shower i started to feel numbness in my face and head, almost like it did not belong to me. I panicked, but assumed i hit some nerve endings, but weeks later it was still there and spread to legs.I went to see my GP, which send me to Neurologist, because it sounded to him a lot like MS. I freaked out. Neuro did neuroexam, but havent found anything interesting, but sent me to MRI of brain and spine anyway, plus VEP evoked potentials. Everything came back clear-negative.
I went on to live my life, altough the blurry vision and tingling never went away.
That was in 2021. Fast forward, in 2024 problems started to come back. Numbness spots on head, tingling in legs, hands and tongue. Tender spots above calfs underneath the thigh which make my walking difficult, especially my left leg. Tremendous pain in my groin/hip area. When im standing too long, my legs are weak and shaky, when i sit too long, they become stiff. My achilles tendonds hurt, my joints are making these loud crackling noises….I thought i was going crazy, so i went for another opinion to different neuro. Again, another wheel of brain, cervical and lumbar MRi, bloodwork, sono, EMG, EEG. All clear. It sounds like there is nothing wrong with me, altough i feel miserable. Recently i was hit by fatigue, that just sort of stuck with me.

Didnt know where to go next, so i ended up at psychiatrist, who gave mi daily doses of sertraline, which make me even worse (more fatigue and muscle pain, insomnia…)
I hope these side effects will go away, because it affects my familly and work life.

Could it be fybro? I read a lot of stories here and i can relate to lot of it… maybe my brain is just going crazy?

 

[sunkacola]

Hello @Andrew_1993 and welcome to the forum.

First........it doesn't sound to me as if you are going crazy. But many of us have felt that way, and can relate. And sometimes others treat us as if this is "all in your head", meaning that you are crazy, but that is not the case.
Fibromyalgia pain does originate in the brain, and not in the body...or at least, that is the current thinking. But that does not in any way mean that we are mentally ill just because we have fibromyalgia.

Since we are not doctors, we cannot tell you whether what is going on with you is fibromyalgia or not. From what you describe it seems to me that it could be, but there are other things that could cause this as well. Have you been tested for Lyme disease, for instance? It might be worthwhile for you to look up online all of the various things that cause symptoms similar to fibromyalgia, and make sure you get tested for each of them because you don't want to miss it if you have something else.

Many medications take time for the body to get used to them, and side effects that appear within the first couple of weeks can subside as the body adjusts. Sertraline is definitely one that the body takes time to get used to. If the sertraline is giving you unpleasant side effects and you have been on it for more than a month, then it may not be the right medication for you. Sertraline is one of four medications that are typically prescribed to people for anxiety and depression, the other three being citalopram, escitalopram, and bupropion. (Brand names for these being Celexa, Lexapro, Welbutrin, Zoloft (sertraline). These can help with fibro symptoms if a person has anxiety or difficulty with stress, as reducing stress is very often helpful. They are not pain medications.

What you might want to do is try to find a doctor who specifically treats fibromyalgia patients, if you can.

And....stick around here. We are not, as I say, medical professionals, but we are a dedicated group of welcoming people who are here to help one another, and you will find support and advice here and possibly answers as well. Ask any questions you may have, or even just come here and rant if you need to....we don't mind at all. I hope this forum is useful to you.

 

[Andrew_1993]

Thank you for your kind response.

I was tested for all kind of stuff including B-12 defficiency, blood test for thyroid, boreliosis and etc. For doctors i am healthy person, but i dont feel like it.
What is strange to me is, that all my problems started with covid. Well thats the thing, i cant tell. I dont know if i catched covid or other virus, but since then the body is just not the same. I actually know a lot of people that have health issues after covid. Nobody just cant tell if its from covid or other problems.
I guess that a lot of people here is just like me sick of doctors telling them, they are okay and there is nothing wrong with them.
Its calming me down, that i can share these problems here and not ventilate myself again and again to my wife and familly, who must be fed up with it…

 

[sunkacola]

@Andrew_1993 yes, we on this forum understand very well what this is like. You are welcome to come here at any time and rant and rave, complain or do anything like that if you want to or if it might help. Many of us here have found that just knowing we can write here and hve people offer empathy and support makes a big difference to us.....I know it has for me. I hope it works that way for you as well. Please let us know if we can help.

As for covid, I think that it is still unknown what all will come out of that pandemic. There is, as I am sure you know, such a thing as Long Covid, which is symptoms of covid that go on for far longer than they "normally" do. And there's also the fact that for some people, it seems that fibromyalgia started after a particularly strong viral infection. So little is actually known at this point, both about covid and about fibro.

And most of us here have had a doctor tell us we are fine when in fact we can hardly get off the couch and are in terrible pain. We know what that is like too. More doctors are becoming familiar with fibro, though. If yours dismisses you, please look for a new one who has treated people with fibro, if you can find one where you live.

 

[mbanker]

I've been through the same ordeal, it all sounds very familiar. There's a recent paper from Yale on covid post vaccination syndrome, you should take a look at that, among the other possibilities.

 

[Grace3]

Im prettysure if you had covid then they would have to tell you. Because you would have had to isolate. Im not being rude but you did not
Mention if you were still drinking,as alcohol can cause a lot of those tingling sensations.
Saying that i can understand that if you sit to long that your legs go stiff. This was one of my worst problems.
When i woke up in the morning i had such bad pains in my lags i was afraid to move them, even taking a few hours of hobbling around until i could stand up straight . At one point i lost the ability to walk at all. I was in a terrible way. However i have started to really look after my body and it may sound stupid but i talk to my legs and give them a lot of love by stroking my legs and even saying nice things to them.
I am feeling so much better these days. I take 2 tramadol when i need them. I hope you find the answer for yourself. One thing i never do is drink alcohol as it can reek havoc to the body. Wishing you well. Warm regards

 

[Andrew_1993]

Im prettysure if you had covid then they would have to tell you. Because you would have had to isolate. Im not being rude but you did not
Mention if you were still drinking,as alcohol can cause a lot of those tingling sensations.
Saying that i can understand that if you sit to long that your legs go stiff. This was one of my worst problems.
When i woke up in the morning i had such bad pains in my lags i was afraid to move them, even taking a few hours of hobbling around until i could stand up straight . At one point i lost the ability to walk at all. I was in a terrible way. However i have started to really look after my body and it may sound stupid but i talk to my legs and give them a lot of love by stroking my legs and even saying nice things to them.
I am feeling so much better these days. I take 2 tramadol when i need them. I hope you find the answer for yourself. One thing i never do is drink alcohol as it can reek havoc to the body. Wishing you well. Warm regards

I stoped drinking alcohol after my problems started, im pretty sure that it is a contributing factor, that worsens my problems.
I also added some supplements to my regiment: D-Ribose, vitamin D, magnesium, Q-10 and Carnitine. I used to be running several times a week, work out. But i noticed if i go to hard on myself and "over do-it", my symptoms worsen and fatigue hits me so hard, that i have to rest for days or even weeks. I get also the terrible stiffnes you mentioned. Its a daily bread for me - weak legs, stifness and pain in them. Left leg is worse. Its get better with gentle walking. Constant pins and needles and tingling in both legs. The problems seem to worsen if i sit too long, or stand too long.
As for covid, i had it four times. I had positive tests, but i will never know, if my problems come from this. I just hope i can recover someday

 

[Grace3]

Nice to hear back from you again sorry if i missed the part where you said you had covid 4 times. The stiff legs has been been my worst problem by far the last few months roughly, as i loose track of time my stiff legs has gone away for now and i am so grateful for that i can get out of bed with no pain and also walk with no pain, i hope the same happens for you. I can also carry shopping with not to many problems.i live 4 flights up. So i just take my time. My daughter is staying with me for now and she is amazed at the progress i have made.she makes me cups of tea in the morning which is great. I really appreciate her. Bye for now, Carol

 

[sunkacola]

However i have started to really look after my body and it may sound stupid but i talk to my legs and give them a lot of love by stroking my legs and even saying nice things to them.

This doesn't sound stupid at all! In fact, it's a great idea. And if you do it in the privacy of your own bedroom you don't have to explain it to anyone.
I started doing that with my whole body years ago, and also thanking my body for being there and for doing whatever I did that day. I actually think it makes a difference.

 

[Anabrock]

OK, I'm not a doctor but I have been around healthcare and disability most of my life and I have a few thoughts. None of which should be taken more seriously than me musing and tossing around possibilities. You need to keep working with your doctors to get to the bottom of this and I really feel for you as that's a rotten thing to have to do. The unknown is the worst kind of illness to have IMHO

So, my thoughts...
1. Weird neurological and sensory stuff could be fibro. Doesn't sound very typically fibro to me, from your description, but its a weird disease which can show up in a variety of weird ways. But before doctors diagnose fibro they need to exclude other possibilities.

2. I work in mental health, so this is kind of in my wheelhouse (though I can't diagnose). There is a mental health adjacent condition called Functional Neurological Disorder. It is caused by psychological trauma, usually, and is mysterious. It seems the brain hijacks itself and creates all kinds of malfunctions in the brain, kind of like epilepsy but not electrical. FND can cause seizures, paralysis, sensory impairment (blindness, deafness etc), so called 'electric shock' pains, numbness, tingling... a baffling variety of symptoms. It is extremely hard to diagnose but it is important to get it right as the treatments for actual neurological disorders may make FND worse, and vice versa. I've done training on FND, but only from a therapy point of view. Enough to know its a real condition which is horribly under diagnosed. The experts that can diagnose FND are usually neuro-psychiatrists. I have two friends with FND who've had great success with treatment.

3. I am aware you're terrified of MS, and I get that as my uncle had it. Some forms of MS are really really hard to diagnose. My uncle had something called Primary Progressive MS, which just gets worse and worse, usually rapidly. But it is extremely rare and MS itself is rare, so this is extremely rare. All you can do is make sure that MS is excluded as much as possible and look out for 'red flag' symptoms. If they don't occur, and doctors don't think it's MS, it probably isn't MS. Not sure that's reassuring but I wanted to acknowledge your fears are real.

4. Various forms of neuropathy such as peripheral neuropathy, which I believe is most common in Type II diabetics but can just happen out of the blue aka 'idiopathic'. The tests for neuropathy is an electrical conductivity test called EMG Nerve Conduction test. If you've had that test and it was negative, you can probably cross that off your list of worries? A friend of mine was getting all kinds of bizarre sensations, balance issues, gait issues, as well as weird pains and tingling. Her EMG test came back positive and a few tests later she was diagnosed with Charcot-Marie Tooth Dystrophy, which is a progressive neurological condition. She's doing OK now - it's not as severe as most MS, but she does have mobility issues. And she gets a lot of fatigue. I don't think CMTD was hard to diagnose, just rare and therefore not expected.

Anyway, I've run out of ideas now. As for your question "Could it be fibro?", yes, but I think they need to exclude other stuff first. I wish you all the best and hope you get an explanation soon.

 

[mbanker]

things that have helped me are compression therapy, red light therapy, cryo therapy... also on valacyclovir (for the epstein barr) and low dose naltrexone, seems to help. haven't found the silver bullet yet...