Hopefully your symptoms will be easily controlled

 

I have this (limited to left side of my body), mine is caused my polycythemia (too many red blood cells), lots of things can cause it though, its fairly common so try not to panic.

 

Thank you @rona and @vanessa.
Vanessa , Im sorry to hear you have polycythemia.

Thanks for the reassurance I must admit I did panic when I realised it was me that was vibrating . But when I searched and found people were saying the same as me I realised I wasn't going crazy .
I have several autoimmune things and I'm sure its to do with that or endocrine .

I'm finding it hard to sleep , I dread going to bed as it seems worse when I'm lying flat out and harder to block out. I had a lie down this afternoon on my side and gripped a small bean bag between my knees and the pressure seemed to help. Vibrations in bed isn't as much fun as it sounds

 

So sorry...it seems as if you had inbuilt rabbit lol!

Any sort of tight sleeping bag...like swaddling the babies sort? Thundercoats? Or wine? Night cap? Something to relax the muscles?

Do not want to get you hooked on anything illegal though...

 

Saw the doc yesterday and she hadn't come across this before and Im having full panel blood tests for thyroid etc but there's not much she can do .
So pleased its not serious and this is one of things I'll have to deal with and find out about alternative stuff that might help such as acupuncture

 

Hope you find out what is causing this and that it can be treated.

 

Thanks

 

I'm sorry it hear this it's sounds awful, hope they can sort something out for you, try xpme warm milk with a splash of brandy before you go to bed might help you sleep.

 

A friend gets palpitations thought to be brought on by stress/menopause.

 

@Happy Paws a brandy sounds good

I was through the menopause at 50 but still get hot flushes sometimes.
I believe this is something to do with an immune thing and I'm wondering if I have Fibromyalgia as well as RA as I understand that vibes can be a symptom of it . I have one of my regular RA appointments with a consultant at the hospital so i will bring that up .
I wouldb't be surprised if stress has something to do with it as well , I think its under estimated how much damage it does to us long term .

 

@Happy Paws a brandy sounds good

I was through the menopause at 50 but still get hot flushes sometimes.
I believe this is something to do with an immune thing and I'm wondering if I have Fibromyalgia as well as RA as I understand that vibes can be a symptom of it . I have one of my regular RA appointments with a consultant at the hospital so i will bring that up .
I wouldb't be surprised if stress has something to do with it as well , I think its under estimated how much damage it does to us long term .

Have they never tested you for hypo thyroid before? Hashimotos thyroiditis which is the auto immune version where the body produces antibodies against its own thyroid often comes with RA and vice versa a lot of patients have both. It can cause inner shaking or tremors too if that's what you mean by vibrations. Low cortisol levels can cause it too, and vitamin D deficiency, I think low B12 can cause it too which can come along with hypothyroid, low IGF1 and growth hormone can cause it too. So you may be right and it is connected to endocrine. The GPs may check you for Vitamin B12. D and possibly calcium and they hypothyroid, but they may not think of checking cortisol, IGF1 or Adult growth hormone mine didn't it was the Endocrinologist who did and found I had problems with those too. IGF1 is a straightforward blood test, but if that's low then you often have an adult growth hormone deficiency too. They can do a cortisol blood test, but really you need a specialist test where you have to stay in for cortisol over time and Adult growth hormone.

 

I saw the RD in january and I had an x ray on my neck because he thinks it could be a problem caused by the discs .
I heard back and he said it didn't show enough to have caused it and they wouldn't do an mri.

My next rheumy appointment was today and I said that although the vibes were the same , Id had electric shock sensations in my hands and feet and tingling , and sometimes I feel i'm twitching but I'm not but sometimes I am so he's agreed to do an MRI.
So that's good , they wont know if they can do anything until they find the cause so i.m not getting my hopes up .

 

I saw the RD in january and I had an x ray on my neck because he thinks it could be a problem caused by the discs .
I heard back and he said it didn't show enough to have caused it and they wouldn't do an mri.

My next rheumy appointment was today and I said that although the vibes were the same , Id had electric shock sensations in my hands and feet and tingling , and sometimes I feel i'm twitching but I'm not but sometimes I am so he's agreed to do an MRI.
So that's good , they wont know if they can do anything until they find the cause so i.m not getting my hopes up .

had a copy of the RD letter sent to my GP and now he's said that due to the tingling and electric shock feeling (atypical paraesthesia) its not my neck , they're not doing an MRI and as I'd asked if I should see a neuro, he's asked my GP to arrange an appointment.
Im a bit annoyed because i did mentioned the electric shocks sensation to my GP and the RD before and I said it seems the vibes etc occur in people with RA, Fibro etc . but they dismissed that. I've googled and it seems peripheral neuropathy (symptoms include tingling and shock feelings) is linked to Sjogrens , i have secondary sjogrens link to RA so it could be that .

Im getting used to it now , but as the paresthesia is increasing , Its worth seeing a neuro .

 

A few years ago I had intracranial hypertension and the treatment was a drug called acetazolamide (very successfully, thank goodness). Now this drug gave me side affects that sound a little similar to what you're experiencing - feelings of vibration and quite "spikey" tingling in my hands and feet, some days it felt like walking on a bed of nails. Now the mechanism of this drug, very roughly speaking is to make you excrete bicarbonate (and fluid), slightly acidifying your blood.

So, cutting a long story short - could you be suffering from some kind of pH imbalance due to your autoimmune conditions?

What ever it turns out to be, hope things improve soon x

 

Id had electric shock sensations in my hands and feet and tingling , and sometimes I feel i'm twitching but I'm not but sometimes I am so he's agreed to do an MRI.

I'm on the CFS spectrum and I get those. The shocks are very weird. You can get all kinds of weird sensations and movements. Luckily they aren't permanent, at least not IME.

 

They are weird and make me jump . TBH I can cope with them as its not all the time , its the constant internal vibes that get to me .

 

@Wilmar Wow, Thank you for this . That would certainly be worth checking out. I have regular blood tests done so I think I could request tests.

I'm glad the intracranial hypertension treatment was sucessful , I had to google that.

 

@Sled dog hotel The blood test I had done in January included Thyroid serum TSH and FT4 and it is normal .
I have nodes on my thyroid and they were checked out a few years ago and i think they did all the T tests and all ok .
My plasma gluscose is with in normal range .
B12 is within the range but at the lower end . Ive had problems with low red cells as MTX drug affects it and I have to take folic acid but also when I remember i take the liquid supplement . I'm supposed to take Vit d supplement but Ive been forgetting to take it on a regular basis so I expect that is on the low side. I think that could make a difference.!

I don't think a cortisol test was done , that is something I could mention to my GP.

Its difficult when you only get ten minutes , it would take more than that to tell her all the stuff that's been happening over the last five years , I dont think she'd believe me . i think she must hear so many people say they are stressed . When she said we'll get in touch if any thing shows up , i got upset and said some thing like is that all you can do and she said What do you want me to do? Luckily the RD was more clued up !

I'm grateful I'm not in pain from it . Just wait and see now .

 

It might be worth you asking your GP for a referral to a pain clinic. They are very knowledgeable about the CFS/Fibro/ME spectrum and you do get more time in an appointment. So you get the chance to discuss stuff.

 

I think you are going to have to start insisting that they listen. I've had doctors dismiss symptoms because they don't know the full range of stuff that can happen. I was lucky in that I finally got a doctor who was willing to let me lead and listened to what I told him was going on.

Fingers crossed for the neuro apt.

 

Not good enough is it really when you have something so worrying

 

Thanks @rona @Mirandashell I'm pretty lucky in my area , we're generally seen within the time limit .