does anyone get these symptoms? (mainly skin-based!)

Hello!

I was wondering if anyone had any ideas about the following or gets similar symptoms? In themselves they're not particularly distressing or serious, but it's always nice to have more info...

. little body twitches/shivers/jerks (not sure of best word to describe) - nothing to do with being cold/temperature, but I randomly get them mainly after I overdo it

. rashes - I've had some form of rash since I first got ill, including a ring-shaped rash on my right hand (now gone) which it has been suggested (by fellow patients) was a lyme rash.

anyway, now I get rashes on my legs, also hands and arms (not eczema, which I had as a child) which sometimes bleed if I'm not careful not to scratch.
I also get what looks a bit like a hive reaction sometimes, especially after being in contact with warm water.

& itchy sore eyes!! I always get this. it doesn't seem to be a reaction to a particular substance.

And then fairly recently, I've started getting an itchy face, which is red on the cheeks & bridge of nose and slightly swollen. I'm slightly concerned it is a malar rash (it is pretty mild really.)

I went to the doctor once when my face was swollen and my housemate was worried, but it went down by the time I got there & obv I was met with the classic being-made-to-feel-like-hypochondriac loveliness

Thanks for reading!

x

 

Hi Nathalie,

I’ve had the red swelling on cheeks and nose, this comes and goes and, like you, it had eased off when I was well enough to go to my GP.

I do get tremor like jerks when I’m passed my limit. Also, usually in bed, I can get random more intense jerks.

I don’t get the ring shaped rash.

I get rashes and itchy skin often, it’s not always obvious what causes it. It drives me nuts. My scalp is often tight and can feel itchy and sometimes feels like it’s burning.

x

 

I get the sore eyes + the little body jerks/chivers. Often when I'm settling down to sleep actually. I haven't really investigated any of them but I'm going to suggest them at the next appointment with my doctor, not sure how successful I'll be.

Sorry to not be of more help!

 

Hi Nathalie

Have you looked into mast cells conditions, MCAS or Mastocytosis, or Histamine intolerance?
https://www.mastocytosis.ca/en/

There is a multitude of symptoms for some patients, including rashes, itching, shivers, angioedema, reactions to changes in temperatures or unidentified environmental substances or food, exercise intolerance etc...

Take pictures to take to your GP!

 

oh yeh I also get the burning scalp thing, but put that down to bleaching my hair to death (which it could well be I spose!)

 

aha. yeh I guess i'm trying to see if these kinda symptoms can be explained by ME, but that does look like something I should investigate! (I think i'm loath to be open to the fact I might have an additional diagnosis, I don't want any more!) I've started a lovely photo album of all of this but just the idea of going to a gp about it fills me with dread...... Thanks v much for link, will look into it

 

Hi @Nathalie Wright yes, I get those symptoms. I put them down to MCAS.
I found this article quite interesting https://www.medscape.com/viewarticle/893858
Avoiding as many triggers as possible helps a fair bit.
@Justy might have some useful tips.

 

I know the feeling, none of us want any more diagnosis!
Bear in mind many of us with ME, PoTS, EDS etc also have MCAS. The 'good' part about it is that there are meds and ways to find some relief from it, although there is no cure for it yet.
Good luck!

 

does anyone know how good GPs are in general with MCAS? I'm guessing generally not great?

 

Really varies I think but mostly unaware of MCAS as it is an emerging condition.
Mine not very knowledgeable initially but was willing to learn. And she was happy when some of the meds started helping my reactions. She felt that for once she could do something after many years of nothing helping.
There are specialist clinics in the UK and it's touch and go too. Are you in the UK? If so I can suggest a very helpful fb group for a starting point.

 

oh yes please, I am in uk (London)

 

Here you go: Mast Cell Activation (UK only)
https://www.facebook.com/groups/368740546663534/files/
Check the files for info on practitioners etc. The group is supportive and knowledgeable, and drama free

(Also see MastAttack (with focus on science) and Mast Movement, both international/North America based groups)

 

I think what you're describing here is a symptom I've had since the very beginning (illness onset in 1990).

I get these small muscle twitches all over. Often they are on muscles that are not under clothing, and can be seen (arms, face), so that's why one of my doctors saw them and told me they are called fasciculations. There are even some videos on youtube (not any of mine) that show some examples.

I couldn't make my muscles move this way voluntarily even if I tried. So it's nothing like tremors, jerks, restless legs, etc. Most people have had a twitching eyelid. It's more like that but it can happen on any muscle at all.

While I was still well enough to work I had them happen on my butt while I was in a meeting. It was very hard for me to 1) stay concentrated on the topic, 2) not break out in laughter. [because if I started to laugh, I'd have to explain, and I REALLY did not want to get into details of my illness or my butt - both are topics one would like to avoid at work)

Like you, these fasciculations get a lot worse after overdoing it in any way. Also, it was interesting that this was one of the many symptoms provoked by the tilt table test just before I passed out.

 

Ketotifen has helped me a lot with the skin rash/hive/eye itchy/etc MCAS symptoms.
The fasciculations come and go without any rhyme or reason that I can figure, except for sure when I've overdone.
I've had a new one lately, a twitch in a muscle under my scalp on the side of my head, not one of my usual culprits! I try to up my magnesium when I'm in a twitchy phase, but I can't say for certain whether it helps or not bc I'm quite random with it.

 

I share many of your symptoms @Nathalie Wright the muscle twitching began early into the illness and now often occurs during PEM.

I have skin rashes for no particular reason and also sensitivity to things like biological washing powder, in fact a great deal of washing powders and fabric softeners cause itching so I stick to certain brands. I have just had to change fabric softener as they all seem to be aiming for the scent to last a week or more which must mean the chemicals must be more concentrated.

I have had the malar rash in the past, I am extremely sensitive to the sun and if I'm not careful I can have rashes that last all summer on my legs and face. I have to make sure I wear high factor sun protection whenever my skin is exposed.

I have developed reactions to many, many chemicals and the smell of diesel and any strong chemicals can cause horrible symptoms such racing heart, severe nausea and even collapse.

I think I probably have MCAS, as I've also had bad reactions to a number of medications such as ACE inhibitors and SSRIs. The thought of having to research another condition is so daunting, then how do you find help for it and treatment?

 

eep I've also had bad reactions to medications come to think of it. argh yeh I know how you feel! at least it seems there are some doctors that can treat it in the uk..?

 

can I ask how you get hold of ketotifen? is it prescription?

 

Yes, it's Rx, and must be compounded, I believe, in the US. In other countries I think it's still Rx but doesn't need compounding. I like compounds though to avoid reactive fillers.

 

It does sound, like MCAS from your symptoms. Going to the GP would most likely be completely pointless, as explained by others. I have to trvel to see a MCAS specialist within UK, but luckily my GP then prescribes what she suggests to them.

You could try a home remedy approach first to see if it helps. However for many of us (like me) the whole possible Lyme and co then M.E then MCAS can be like going down a rabbit hole that has no end. MCAS also can step up in severity over time, so seeing a good Dr now is a good idea, maybe stop that from happening. I see Dr Croom and im happy to talk about it by PM.