I hope I'm not alone :( Skin senstivity and restless "leg" all over?

[isitme]

Or maybe I do. I don't wish it on anyone


Does anyone else's skin get extremely sensitive and hot? And your muscles feel all shaky and weak? It's like I have restless leg all over. Like my skin is crawling. Such an unpleasant feeling and nothing to do about it. Went to the ER last night because I thought I was having an allergic reaction and they said I had a stuffy nose. Nothing was wrong with me

I used to just get the burning and pain up and down my back and neck. This is the worst symptom.

 

[diamond]

i have something similar all over my body ...burning muscles and skin.... shaky and weak and super heavy with a buzzing feeling .

It feels like like im hooked up to some electronic device ...i guess skin crawling could be a way to partly describe it but its the pain the sensation creates that's unbearable for me. Its like someone set fire to my muscles and joints or poured acid all over me.

Its so hard to know how similar each of our symptoms are as we all use different words to describe as best we can.....but it sounds like you are suffering and i wouldn't wish some of what this illness can conjure up on anyone.

I think there are treatments for RLS ....can you discuss it with your PCP to see if there is anything they can suggest that might help.

Have you tried an epsoms salts bath and either ice or heat to the areas. Please take care of yourself and if it continues seek some help again from a practitioner who will take you more seriously.

Im not sure in ER they really understand fibro CFS or ME very well.

 

[isitme]

i have something similar all over my body ...burning muscles and skin.... shaky and weak and super heavy with a buzzing feeling .

It feels like like im hooked up to some electronic device ...i guess skin crawling could be a way to partly describe it but its the pain the sensation creates that's unbearable for me. Its like someone set fire to my muscles and joints or poured acid all over me.

Its so hard to know how similar each of our symptoms are as we all use different words to describe as best we can.....but it sounds like you are suffering and i wouldn't wish some of what this illness can conjure up on anyone.

I think there are treatments for RLS ....can you discuss it with your PCP to see if there is anything they can suggest that might help.

Have you tried an epsoms salts bath and either ice or heat to the areas. Please take care of yourself and if it continues seek some help again from a practitioner who will take you more seriously.

Im not sure in ER they really understand fibro CFS or ME very well.

I'm sorry for your struggles my friend

The thing with mine is that it isn't actually a pain. The feeling isn't exactly like being forced to hold an isometric hold (think of being in a squat position with no weight, just your body, and holding it) but the psychological torment is. It's like I experience these sensory things that I absolutely cannot bear, but I have to bear them. Just like when you're working out and you've gone too far, too hard. Your body starts to slow down, I suppose eventually you would pass out. But with mine it's like I'm at the brink and sometimes feel I've even crossed it, but my body remains awake. I can't sleep when I have this feeling. I took a klonopin today and thank God the symptoms went away maybe 40%. But that is heaven compared to where I was. I also have a myriad of psychiatric disorders which in conjunction with fibromyalgia make existing very difficult sometimes.

What kind of makes me mad is that I was initially diagnosed with it by a physiatrist who put me on a medicine and I never spoke to her again. I had to switch to my primary doctor because she wasn't taking new patients. And my primary doctor just tells me there is nothing that can be done because I've had mris, blood work, urine work, and nothing is wrong with my body. Healthy lungs, healthy heart, all my bloodwork comes back normal. I saw a neurologist who just did the normal battery of tests (pricked me in areas, reflex hammer on knee, looked at my eyes with a light), nothing wrong there. Wish I had a doctor who could help me. Even when my back and spine and neck ache or burn now it is somehow not that physically painful for me, but at the same time my mind makes it feel like I absolutely cannot bear it. It is such a weird feeling. It's like one section of my brain is sending a signal saying that you feel pain now, but it isn't so severe, and another section is giving a response as if I had my hand on a hot stove-- STOP DOING WHAT YOU'RE DOING NOW!!! YOU CAN'T HANDLE THIS!! Of course I'm not actually doing anything to warrant such a response.

I actually miss the days when I "only" had a burning up and down my back. Those days I could lie in bed with an ice pack and reduce some amount of the symptoms.

At the ER they're all looking at me like I'm crazy and I'm saying I can't take this I can't breath my muscles are so weak it feels like I'll collapse into a puddle on the floor. They literally wrote on the reason "stuffy nose" and told me I had a cold. Like damnit I'm a 27 year old human I know what a cold is! But I realize now that with fibromyalgia what I remember a cold to be and what it is now are probably different. So it may be possible

I'm going to ask my doctor about medicine for the rls/plms/plmd or whatever it's called when it affects your arms as well

 

[diamond]

Im sorry too you are struggling with this....its quite hard to picture from words quite what others try so hard to explain.

For sure my muscles feel so weak my legs often can barely hold me up and i walk sooo slow....like a 90 year old around the house and not enough strength in my arms to do basic tasks like washing the dishes without pushing myself really hard.

Is that the kind of feeling you mean?

Sorry if im not catching on.....i do hope you find some answers.

Maybe someone else on the forum will have better advice or similar experience they can share.....please let us know how things go for you.

Also just an idea did you know when you are anxious and hyperventilate your legs go weak and jelly like....could this be a possibility as you mentioned psychiatric disorders.

Sometimes you can get a whole heap of physical symptoms from anxiety which adds to fibro misery.

 

[isitme]

Im sorry too you are struggling with this....its quite hard to picture from words quite what others try so hard to explain.

For sure my muscles feel so weak my legs often can barely hold me up and i walk sooo slow....like a 90 year old around the house and not enough strength in my arms to do basic tasks like washing the dishes without pushing myself really hard.

Is that the kind of feeling you mean?

Sorry if im not catching on.....i do hope you find some answers.

Maybe someone else on the forum will have better advice or similar experience they can share.....please let us know how things go for you.

Also just an idea did you know when you are anxious and hyperventilate your legs go weak and jelly like....could this be a possibility as you mentioned psychiatric disorders.

Sometimes you can get a whole heap of physical symptoms from anxiety which adds to fibro misery.

Yeah i think it's a vicious circle for me. Psychiatric issues which cause anxiety, which makes my fibromyalgia worse, which causes more anxiety, which worsens the psychiatric issues. blah

You described it well. I have the feeling I can't even lift my arms to reach my keyboard and type something out. Like every muscle in my body has a 50 lb weight attached to it. And I also walk like an old man lol. My hips and joints are always bothering me so I have a weird gimp sort of thing. And I'm 27.

Well thanks, hope you find relief as well. I thought I was going insane. Maybe it is fibro after all.

 

[diamond]

Yes feeling like our limbs and body is heavy and weak is a fibro symptom.....it can feel like someone poured concrete into us or like you say a 50lb weight attached

For most sufferers this feeling comes and goes ....rest when its at its worst...move when you can as inactivity is not great for our bodies either.

But listen to your body and adapt accordingly....try not to be scared as like you say its a vicious cycle.

 

[isitme]

Yes feeling like our limbs and body is heavy and weak is a fibro symptom.....it can feel like someone poured concrete into us or like you say a 50lb weight attached

For most sufferers this feeling comes and goes ....rest when its at its worst...move when you can as inactivity is not great for our bodies either.

But listen to your body and adapt accordingly....try not to be scared as like you say its a vicious cycle.

Do you find yourself often afraid? That is one of the worst parts for me. Living in terror of what my body is going to do next. People really have no idea the kind of hell one's mind is capable of putting itself through. I have such a sense of dread most days thinking about what will happen next. Never really have anyone to talk to about it. They don't understand.
I remember taking too much of a cold/flu medication once when I was younger and I got something called a DMT (compound in the medicine) itch, which basically consisted of intense itches all over one's body which cannot be satisfied by itching. It got to the point where I almost started slicing my body all over to "get to" the itch. Fibromyalgia reminds me of that. So much suffering and absolutely nothing to do about it.
I have a new psychologist I will be seeing soon. Hopefully I'll speak with her about some of it

incidentally have you found any medications that help you?

 

[diamond]

I would definitely speak to the psychologist about all of it rather than some of it....honestly what you are experiencing is normal....and yes living with the constant uncertainty is a huge challenge.

Some seem to find this part easier than others but for sure i have had more than my share of anxiety especially when my fibro has been much worse and i cant get enough out of life to feel at least partly like myself and fulfill the things i enjoy or am so keen to achieve.

I don't think it would be fair to say what medications i take individually as we are all so different and i haven't had a great deal of success anyway.....but some people do get relief from a whole range of possibilities from low doses of anti depressants to anti epileptics like gabapentin and lyrica used for burning pain and many other pain medications and muscle relaxers.

You could ask to be referred to a pain specialist or rheumy or if you have a good PCP who is good with fibro and pain management.

If you read over old threads here there is so much information and hopefully some will help.

Good Luck and please do join in any time.

 

[medicmurphy]

I have felt rls type symptom all over as well. Not to the degree you describe. I find getting up and walking around a bit helps as well as a heating pad. If it’s true rls magnesium helps. I’m not recommending by mouth as I’m not a Dr and you would need blood work to reveal your mag levels. However, you can purchase a magnesium spray where you can apply it to the areas you need relief from without raising your blood levels. Ask at a health food store for it. My dr recommended it

 

[isitme]

Thanks for replies guys. This site is so sad. I was reading some other thread where the person said they got horrible burning pains all over their legs and cried every night. Life is so hard and with FM there is not much upside.

 

[Sagey]

Hi Isitme,

Sorry your having that feeling. The only time I had something that was like that is when I recieved a morphine shot, for pain in the er. I became hot and my skin was sensitive and my whole body was jumpy lol and felt extremely shaky.Like every nerve was excited,it was scary, but it definitely was a nervous system reaction to the medicine.

Our bodies react to so many different things in our surroundings whether it’s airborne, ingested or topical. We all have our different sensitivities.Its hard to say my whether this was anxiety,it’s possible.
But as long as it has calmed down that’s the important part.
Fibro does cause the extreme weakness and fatigue and strange sensations on the skin at times.Temperature fluctuations are common.I’m hot one minute and the next I’m freezing.I could be wearing a tank top one minute and 5 minutes later I’m wearing a wooly bear sweater lol.

Hope youre feeling better and keep reading,because there’s s lot of good advice here.

Sagey