I don't know what to do

And132

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Jul 13, 2022
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2
Hi,I am 21 years old and after I suffered from a viral infection( don't know what it was but the doctor prescribed viral medication) I started to experience pain in the chest (that changes from right to left side) and cold legs and arms when I was exposed to cold weather.I experienced some panic attacks during that time,i thought i have probleme with my heart.I went to cardio,everything was ok.After that the problems with my chest pain ceased but the reaction to cold temperatures persisted.All the blood tests were good except low vitamin d(14).So I thought this was the problem.The doctor prescribed 4000 IU vit D daily.After that my right leg became very stiff and always in contraction.The stiffness persists and I also felt pain in the knee.I blamed vitamin d deficiency for that. Than I experienced pain like burning or itching on some parts of my skin.I went to neuro,done RMI(brain and cervical spine). Good results. Now my symtoms are: stiffness in right leg(If i work out it it gets worse),itchy pins sensation all over my skin (no rash),back pain(after staying on my feet for long periods of time) ,sensitivity to cold(makes all this symtoms worse),cold sweats (my right leg turned cold and sweaty for a week),fatigue.
I don't know what to do next.Wait and hope that is because of vit D or consult a doctor.I went to cardio neuro and endo already.
 

JayCS

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Hi And, and welcome!

Quite a few symptoms that suggest something like fibromyalgia, as well as vit. D deficiency.
You could have a look at the 2016 fibromyalgia criteria attached to get more certainty.
One important thing you haven't mentioned is you've already had it 3 months.

4000 IU/d is a good high dose of vitamin D3. Docs often don't prescribe it, but added vitamin K2, esp. in the MK7 form, helps more, according to research. So after taking it for years (20.000 IU/wk) without I've now changed that to added K2-MK7, as it was still a bit low, now sort of average. Also tried taking it more than once a week. It all doesn't make a difference to my symptoms, I don't think, but I need to be safe, too much going on, and my GP recommends me to stay on it "forever".
 

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Auriel

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Hello And132 I’m low in vit d too (but there’s not much sun in wales, a lot of sheep just not much sun) I’m glad they’re ruling other things out for you, it maybe fibro it might not be? Fibro’s a weird one but it’s good you’ve joined ready in case it is, here we are have a cup of coffee ☕️ + doughnut 🍩 + welcome to the forum 😁
 

sweetkamie20

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I don't know what to do next.Wait and hope that is because of vit D or consult a doctor.I went to cardio neuro and endo already.
Hi And :) Glad you found us!

I suspect there are a lot of people with fibro that have felt some of the same things as you are. That said, fibro symptoms vary widely from person to person so you might not meet anyone that has the exact same symptoms. We are each little medical unicorns 🦄

I start to feel like I have a severe fever but only in my neck, shoulders and head. It comes with fatigue. I have light and sound sensitivity and get wiped out for 2-3 days from just 3 hours in noisy atmospheres. And sometimes I feel like I have a sunburn on my face. Oh and then tender points scream for mercy from just a simple touch. These experiences bounce around from severe to unnoticed...

It sounds like now is a good time to check in with a doctor that is in the rheumatology realm and/or check to see if there are any other lab tests that havent been done. What I did was search for doctors in my area that specialize in fibromyalgia and then read patient reviews. I wanted someone that helped patients find answers rather than say, "I wish I could help."

We are here to help you along the way! Welcome 🤠
 

sunkacola

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Just a gentle suggestion......................when someone comes here brand new asking for help, perhaps that person would be better served by our responses to their thread concentrating on their questions and concerns, rather than going off into emoji-stuffed replies to one another about coffee and cake.
Out of 11 responses, 7 of them here are not addressing the concerns of the OP at all, but are only making jokes and emojis.

(Please note, to anyone who is new to this thread, that some of these have since been deleted by their authors.)

Nothing wrong with making jokes and emojis, but I think those are better confined in threads that are not the very first contact a person makes trying to find help and support. Sometimes, that person is scared and deeply concerned and needing real information and serious support and suggestions, which is basically what this forum is intended to offer. Let's focus on doing that and save the back-and-forth jokey emojis for other places.
 
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sunkacola

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Hi,I am 21 years old and after I suffered from a viral infection( don't know what it was but the doctor prescribed viral medication) I started to experience pain in the chest (that changes from right to left side) and cold legs and arms when I was exposed to cold weather.I experienced some panic attacks during that time,i thought i have probleme with my heart.I went to cardio,everything was ok.After that the problems with my chest pain ceased but the reaction to cold temperatures persisted.All the blood tests were good except low vitamin d(14).So I thought this was the problem.The doctor prescribed 4000 IU vit D daily.After that my right leg became very stiff and always in contraction.The stiffness persists and I also felt pain in the knee.I blamed vitamin d deficiency for that. Than I experienced pain like burning or itching on some parts of my skin.I went to neuro,done RMI(brain and cervical spine). Good results. Now my symtoms are: stiffness in right leg(If i work out it it gets worse),itchy pins sensation all over my skin (no rash),back pain(after staying on my feet for long periods of time) ,sensitivity to cold(makes all this symtoms worse),cold sweats (my right leg turned cold and sweaty for a week),fatigue.
I don't know what to do next.Wait and hope that is because of vit D or consult a doctor.I went to cardio neuro and endo already.
And132, so sorry you are going through all of this. Unfortunately, almost the only thing you can do at this point is continue to pursue the causes for the things you are experiencing. Often, fibromyalgia is diagnosed by eliminating all the other things that could be causing the problem. There is no one test that definitively diagnoses fibromyalgia. I suggest that you start by finding a doctor who is truly familiar with fibromyalgia who can help you to navigate all the remaining tests and consultations to narrow down the cause(s) of your problems. Be aware that the "pressure point test" is inaccurate, and doctors who are up to date on fibro no longer use that.

Simultaneously, you might want to experiment a bit with things that will improve your overall health, such as eating a very healthy diet and getting some mind exercise every day and reducing stress in your life as much as possible. We have many ideas about how to do that if you are interested.
 

And132

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I am very interested in your advice, thank you. I recently cut down on sugar and food with gluten and it seems to have helped the pain a little(I try not to be too happy about it,maybe the pain will return).I walk daily for 2 hours but no other exercise ( I m afraid of making my muscles stiff again).Even though I'm not sure I have it or not ,this changes helped.So I am eager for more tips If you have.
 

sunkacola

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Hi again, And132.
It sounds to me as if you are going a great job of taking as much charge of your health as possible and I commend you on that! Daily walking 2 hours is wonderful, and I wouldn't even suggest doing more than that at this point, except for taking perhaps 10 or 15 minutes of that time to stretch, which may help with the muscles a lot.

I wrote a post that has many suggestions for things to try. Please don't be overwhelmed, as I put everything possible into the post but don't expect you or anyone to do it all at once. slow, careful experimenting is the best thing. That particular thread is now closed for comments but if you have any questions about what I say, please post them as I and others will be happy to help you out as much as possible.
 

sweetkamie20

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I walk daily for 2 hours but no other exercise ( I m afraid of making my muscles stiff again).
I know doing too much can make things harder. As a tip: some days you may be able to do way more than other days without making things harder. It’s super super helpful to pay more attention to what your body is saying than some goal that’s immovable. If you push through too hard it can trigger things. We’ve all done that, more than once, so don’t be hard on yourself if it happens. There’s a learning curve and you have already jumped into it. I give you a ton of credit for respecting where things can go and trying to prevent it :)
 
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