Do any of you have these severe muscle symptoms?

[ChookityPop]

My biggest problems are muscles that strain easily and OI that has been worsening quite a lot lately.

Just laying in the back of the car while someone else is driving will strain my stomach muscles instantly. Its unbearable. I have to drive myself so I can slow down during turns etc to minimize these issues.

I tried playing xbox last year etc and what got me was my stomach muscles got BURNT out from the little tensing of the body one does during gaming.

At the same time I have been able to drive for hours, walking in the supermarket, have pretty intensive sex etc. I have learned to manage I guess.

Lately my OI is a lot worse so all these things are becoming harder.

 

[lenora]

I find that being the driver in a vehicle is often easier b/c you know what's happening. A dip in the road, a hole can take the unprepared by surprise, plus the steering wheel provides stability of a sort. I can see where lying down could make things harder, the other things mentioned are things you have control over.

In the supermarket you can leave and you probably wouldn't even have sex if you weren't feeling top-notch. It's so hard to know how much things like simple exercise is too much and yet not enough. Sorry about your OI. Yours, Lenora.

 

[xebex]

Yes my biggest problem is severe muscle fatigue in my mid back muscles. If I stand up too long (I was managing about 20mins but recently crashed and am downs to 2 mins - pretty much bedridden at the moment ) the muscles will burn like I’m lifting weights or something and then be super sensitive to touch. But the really strange thing is it seems to cause brainfog and extreme anxiety - antihistamines make the anxiety and brainfog go away.

I also had a short period of time where vitamin C and quercetin seemed to help so I feel there is some kind of inflammation loop that’s releasing cytokines and histamines. If I rest enough the inflammation goes away but the moment I go over my very short limit it all comes back on.

So far I’ve not been able to get to the bottom of it but am certain histamine is part of it. I am thinking of trying Benadryl again, in the past it has caused 1 day remission but then the following day it no longer worked. It also causes extreme sleepiness so not really an option to take daily but I want to experiment and see if it does actually help the muscles.

 

[ChookityPop]

Yes my biggest problem is severe muscle fatigue in my mid back muscles. If I stand up too long (I was managing about 20mins but recently crashed and am downs to 2 mins - pretty much bedridden at the moment ) the muscles will burn like I’m lifting weights or something and then be super sensitive to touch. But the really strange thing is it seems to cause brainfog and extreme anxiety - antihistamines make the anxiety and brainfog go away.

I also had a short period of time where vitamin C and quercetin seemed to help so I feel there is some kind of inflammation loop that’s releasing cytokines and histamines. If I rest enough the inflammation goes away but the moment I go over my very short limit it all comes back on.

So far I’ve not been able to get to the bottom of it but am certain histamine is part of it. I am thinking of trying Benadryl again, in the past it has caused 1 day remission but then the following day it no longer worked. It also causes extreme sleepiness so not really an option to take daily but I want to experiment and see if it does actually help the muscles.

Very interesting! I also think I have histamine issues. I have a history with anaphylaxis, had it 2 times the year before I got sick but never again since I have been super careful and only eating stuff I know I tolerate.

I were cooking achilles for hours and hours a while ago and also eating hard cheeses. Both which I never eat. And I felt incredibly inflamed in my body and it went away after cutting them out again which makes me think histamine.

I think it actually worsened my immune mediated SFN as my orthostatic intolerance is now way worse.

I have to try cromolyn or something to see if I benefit!

 

[lenora]

Hi @xebex.....I wonder if you have neuropathy (of some sort) in those particular back muscles. I have the same problem, although it has been worse in the past and well, those certain days when it seems that everything hurts. The burning pain is often indicative of that.

Does it extend to the front of your chest at all? I have that...as well as under the arm. L. side especially and then again in the lower back (of course I have broken a vertebra there 3 times). It's also possible the pain is actually caused by costochondritis (inflammation between the ribs), and that's certainly not uncommon among us. I have mine under fairly good control now.....until I really start coughing, that is. Then the ribs come out of place and on and on it goes. Please read about it.....perhaps there's something new that I don't know about to tell you.

I find that Ace ice packs directly on the spine, plus a mild muscle relaxant and pain reliever (OTC) is fine, will often help. There are also acupressure points that I use, but I wouldn't go around pressing areas until you know what's going to help.

In the beginning for me (after surgery) it was a true nightmare b/c it interfered with breathing. Little by little I learned how to listen to my body and went from there. It does take time and I wish you well. Yours, Lenora

 

[xebex]

Hi @lenora thanks for your reply I dont think it’s is neuropathy as I do get that - like a sort of sun burn feeling in the skin?

i mean it could be related to that, but the burning is a muscle burn like from if you over do it lifting heavy weights except I’m just standing up.
I definitely have some inflammation I. My spine (but not ribs) this all happened after I hurt my back 3 years ago - before then my ME was a solid moderate and now I’m bordering on Severe. The inflammation in my back muscle seems directly related to crashes.

 

[xebex]

@ChookityPop sounds like you def have some histamine issues going on I too want to try Cromolyn. I think you can get an over the counter spray in Canada but asked doc for prescription and he looked at me blankly! I take Allegra which helps with dust and cat dander ie sneezing but it doesn’t nothing for my back muscles. I’m on a low histamine and low sugar diet. interestingly sugar intake seems directly related to how badly I react to histamine foods. I feel like histamine isn’t causing the back muscles to act like this - whatever is going on in ME causes this muscle inflammation (to me it’s like the muscles are stuck ina loop and can’t heal - I fear they are permanently damaged) and then that releases histamines which if you are sensitive causes a whole load of extra hell.

 

[lenora]

Good morning.....In the U.S. there is an OTC spray (used to be prescription) that you can use. Ask the pharmacist directly, not the behind the counter staff as he/she will know.

I've used the antihistamines and oddly enough, they make my anxiety worse. (I do suffer a bad case of it.) Try one and see how it works, but I still swear by the Ace ice packs. They're made in all sizes and don't freeze as hard as a block. Just wrap in a tea towel and lay directly on them for 15 min. on/15 off, etc. I generally forget about them as they're soon very comfortable and feel good. I use them in many different parts of my body.

Yes, I believe that we're talking about the same type of pain. I was diagnosed with FM early on and it's a common diagnosis in us (unfortunately we also get many other problems, especially with joints, etc.).

I'm not a young chick, I'm 75 and have had this diagnosed for at least 35 yrs. Actually, one of the earliest treatments was guafenesin, an ingredient in antihistamines. It was thought that loosening the body's secretions would help the illness. That turned out to be wrong, I took it for years and now it's back again as something they're doing research on.

There is a book you may find interesting (easy to read). "Run Down" by Dr. Michael Gallagher. An ultra-marathoner and athlete who developed ME. He was/is an orthopedic surgeon and that's hard work. Read it, you may glean some information from it that will help. Cort Johnson recommended it on his site, Health Rising. I found the ending somewhat unfinished, but then that's our illness at this time. It's available on Amazon. Feel better soon. Yours, Lenora

 

[xebex]

Thanks @lenora yea Benadryl sometimes gives me panic attacks and extreme sleepiness but the one random time it didn’t do that it also caused some kind of remission Allegra is the only one I can take and it doesn’t really do much - I will try that over the counter spray.. I have often wondered if I have fibromyalgia but because my pain and muscle issues isn’t widespread I have always ruled it out. My muscle dysfunction is only in mid back. I do get muscles aches as part of PEM but this mid back muscle dysfunction exists outside of PEM.

 

[chilove]

Yes my biggest problem is severe muscle fatigue in my mid back muscles. If I stand up too long (I was managing about 20mins but recently crashed and am downs to 2 mins - pretty much bedridden at the moment ) the muscles will burn like I’m lifting weights or something and then be super sensitive to touch. But the really strange thing is it seems to cause brainfog and extreme anxiety - antihistamines make the anxiety and brainfog go away.

I also had a short period of time where vitamin C and quercetin seemed to help so I feel there is some kind of inflammation loop that’s releasing cytokines and histamines. If I rest enough the inflammation goes away but the moment I go over my very short limit it all comes back on.

So far I’ve not been able to get to the bottom of it but am certain histamine is part of it. I am thinking of trying Benadryl again, in the past it has caused 1 day remission but then the following day it no longer worked. It also causes extreme sleepiness so not really an option to take daily but I want to experiment and see if it does actually help the muscles.

Wow, I just came here to look up what could be causing a new recent symptom for me: weak and burning and aching muscles in my legs. Guess what? I have mast cell activation syndrome and histamine intolerance and have been eating a lot of higher histamine foods lately due to stress. I bet that's it! I will get back on a low histamine diet and antihistamine protocol and report back if it helps.

 

[lenora]

Hello @ChookityPop.....I'm a bit late in responding, but it's been a bit nutty.

The spray I'm thinking of isn't something like Afrin (addictive), it's a cortisone spray that until about 2 yrs. ago was prescribed by doctors. Now you can get it over the counter. I hope it helps you, but it depends upon the cause of the back pain.

It occurred to me that because I don't know you, I can't readily know how long you've had this diagnosis and that type of thing. My back hurts a LOT also and I have migraines (but I just found out it's probably sinusitis that is chronic. I've had it for years, and this will continue in all likelihood). Anyway, the spray certainly helps that and I'm grateful.

I've had problems with my vertebrae and ribs for years. I was very young when I was first diagnosed with osteoporosis (when the machines first became available) and have a congenital history of back problems. A childhood of casts and braces....and then everything was better in my late teens.

Meanwhile, I wasn't aware that I was shrinking....a lot. Oh, it's clear now, especially after suffering pelvic fractures last January as well as more vertebrae. This time my back really hurts. My hip too, for that matter...but I didn't need surgery. Osteoporosis can begin at anytime. People aren't aware of that, although in women 40's is the most common time and in men definitely by age 70. Your GP can prescribe the needed test (not difficult, just lying on a table for a few minutes).

I was on Fosamax for 30 yrs. and still ended up with the pelvic fractures (but no broken hip....very close to it, though), lots of fractured vertebrae, broken wrist and toes over the years and I exercised constantly. I'm going off Fosamax and my doctor wanted to put me on Prolia. I've heard even worse things about it, so will try with calcium and my usual standbys. I believe in both vitamins, herbs, etc., and medicine. I've found help in both.

I have a lot of other problems, two neurological conditions in addition to ME and the usual things for my age (I'm 75) but realize that most of you don't have these complications...at least yet. I also have two different types of epilepsy which are responsible for the falls. And life goes on! I hope you've found some answers and/or help. Yours, Lenora