Diagnosed by GP last year but not seen a rheumatologist yet but skin so prickly, stingy and weird

[Kim]

Hello so was wondering if anyone can help? I had a six month episode of tingling, prickly skin in 2020 and saw a neurologist to rule out ms, blood tests (showed slightly raised IgE) and a nerve conduction test.
Early last year my GP diagnosed me with fibro as she said I had the tender points and sometimes feel achey all over and neck pain.
Since then my skin has been ok apart from sudden tingling in leg then goosebumps patches appear for a short time.
But...Since Xmas My skin has started again. It's like i cant get warm then im have goosebumps all over arms, legs and sometimes face with itchy scalp. The skin feels stingy and sometimes burns but no rashes apart from mottling. I'm not in pain per say but it's like all my skin is hypersensitive to the slightest touch or movement from the air.
As I haven't seen a rheumotologist I wondered if my GP was correct as when i spoke to another GP the other week he said he didn't think my skin problems were fibro related. Any suggestions ??? thank you

 

[sunkacola]

Hi Kim and welcome.

You may or may not have fibro. the thing is, that pressure point test has been pretty much debunked and it is no longer used by doctors who are familiar with fibro because it is so unreliable. As an example, I have had it done on me three times. Once I felt nothing, once I felt a little pain, and once i actually almost screamed. So that alone is not a way to diagnose fibro. It really is a diagnosis of elimination -- you have to be tested for all of the other things it might be in order to rule them out.

What you describe doesn't sound like fibro to me, but of course, I am not a doctor. If you only sometimes feel achy or neck pain, it doesn't sound like fibro to me, because with fibro the pain is widespread and much worse than what one would call achy.
The prickly skin could be anything from allergies to just about anything else, including a symptom of fibro. Usually, though, fibro comes with a great deal more pain than just achy sometimes.

I would recommend you keep looking into the skin issue with whomever seems appropriate, and don't assume at this point that you have fibromyalgia, but get tested for the things that might cause your skin issue, and treat the achiness with epsom salts or massage or whatever you have found helps with that.

 

[JayCS]

with fibro the pain is widespread and much worse than what one would call achy.

Ah, that may be the reason why I call mine The Ache. It's the deep ache we get from the flu and to me worse than the single local pains everywhere. But it shows me either I've overdone it & need to rest or something else is going very wrong.

treat the achiness with epsom salts or massage or whatever you have found helps with that.

Hardly anything helps me except resting & then keeping to the sweet spots. A bath would be too much, a hot water bottle is sometimes OK, a massage would hurt me (I think?), but a very short cold shower or wash can help (not necessarily tho) and some of my supps, like GABA.

tingling in leg then goosebumps patches

goosebumps all over arms, legs and sometimes face with itchy scalp. The skin feels stingy and sometimes burns but no rashes apart from mottling. I'm not in pain per say but it's like all my skin is hypersensitive to the slightest touch or movement from the air.

It sounds to me as if it might be a histamine problem.
I've never had symptoms like yours much until now (Nov 30th) my 1st Pfizer vaccine. Less goosebumps, more burning, sometimes tiny bumps over larger areas, more tangible (for my wife too) than visible - or do you mean that with goosebumps? (Goosebumps to me mean hair is standing on end.) Before I got a handle on it, I couldn't tolerate any shower, hot, warm or cold, everything hurt in and after. I did it all the same, because it was important for other reasons (esp. sleep), but had to whimper and moan, tough for my wife to hear.
My other symptoms are/were mainly fluey, e.g. feverish, burning sinuses, increased Ache and fatigue, on sick leave since.
Result of my endless research-searches was histamine intolerance, then mast cell activation syndrome, which is related.
Since I've treated it as this, using the supps that studies & functional docs on the web suggest, and increased Wim Hof's breath-holding to several times a day, I've improved it quite a bit. I'm increasing low histamine foods bit by bit and adding further supps.

keep looking into the skin issue with whomever seems appropriate

Normal for histamine is antihistamines and diet, which my GP thinks'd both be too tough for me, the meds'd make me - more - tired, which is the worst thing that can happen to me, and I already have an extremely exquisite diet. He tested me for DAO, the enzyme that breaks histamine down, but it was OK. I asked if it could still be mast cells more in the skin rather than food/gut histamine, or cytokines (inflammation) and he agreed, but he was out of his depth there. Another doc I asked just looked at me with big eyes at everything I've found out. I'm thinking about trying my allergologist, and taken up contact with an immunologist far away, who referred me to another one even further away (both professors). However as these don't know me well, they might just recommend antihistamines and won't know all the supps. I'll be supplementing (a vegan form of) DAO all the same, just to see.

 

[Kim]

I sent off for a private DAO test and it came back at 7. Apparantely over 3 up to 10 shows an intolerance and over 10 extremely intolerant. I haven't started antihistamines yet but I guess I should try? or look at low histamine foods, which foods don't you eat to help and which supps?

 

[JayCS]

I sent off for a private DAO test and it came back at 7. Apparantely over 3 up to 10 shows an intolerance and over 10 extremely intolerant. I haven't started antihistamines yet but I guess I should try? or look at low histamine foods, which foods don't you eat to help and which supps?

Ah, at last, someone I can talk shop with about DAO and histamine ;-). So my hunch was dead right!
As it's "your" thread and seems a histamine thread, I won't hide the details...

Hehe, funny, you made the same mistake as me with "over 10". DAO is an enzyme which degrades histamine. So if is high, that means it can balance the histamine. Over 10 would mean it's no problem, it's "under 3" that makes us extremely intolerant. I had 20, so my DAO is OK. But yours isn't I agree.

Regarding antihistamines I don't know how med-tolerant & how active you are. If it helped my fatigue but made me more tired, I still wouldn't be able to concentrate / work and would have a worse quality of life. Experienced that with amitriptyline, melatonin, L-tryptophan and CBD oil. But the antihistamines recommended by Klimas and Chheda are Benadryl (more for hives) and Famotidine (more for stomach acidity).

And regarding diet I don't know how easy you can change, an antihistamine diet is a pretty tough one - and I'm very diet-hardened.
But I'm concentrating on eating more foods with low histamine, rather than less with high histamine. So I'm increasing my gluten-free muesli with a few berries (actually there are a few histamine ones like strawberries in there, but not much) and leaving nuts (walnuts & cashew are worst) and dry fruits (figs are among the worst) out of it, although I actually desperately need nuts for lipids and cos I'm pretty vegan (anyone remember Pretty Vacant by the Sex Pistols? ) - maybe I should do a cover version: "Pretty Vegan" by the Massage Pistols (seriously - anyone want me to try?). I've greatly increased pumpkin seeds cos they're good for so much and I love them too, and decreased nuts & dry fruits to compensate. For the other 2 meals (= 3 cos of lipids) I've greatly increased my veggies (usually raw anyway, and actually fresh has least histamine), esp. broccoli (raw too), but also carrots, endive/chicory, yellow peppers, sweet potatoes (raw, I hate them cooked), cucumbers. No tomatoes, avocados, spinach, and eggplant. Problem is there are loads of different lists, probably it's once again very individual. Rice is said to be better white/parboiled, but I only like wholemeal, so not sure on that, and potatoes some say are OK, some don't, and I often seem to react to the solanine or something. Since I drink mainly soy milk, I'm increasing chamomile and fennel tea, both OK, and maybe a bit more almond milk. So compromises of course.
In case you need more basics & less details, the big DONT's are things like alcohol, food additives, gluten,
cheese, canned & pickled food (e.g. olives), beans.

Supps - I use the recommendations by Klimas, Chheda & Hoffman (hoffmancentre), all fairly similar.
The latter's "A-Team" (he has a "B-", which I'm getting on to this week, and a "C-Team" too) are
Quercetin – 2000 mg daily, dose divided
Green tea (EGCG, L-Theanine) – 2 to 3 cups daily. Supplement with 500 mg (175 mg of ECGC) twice daily
Curcumin (Meriva is a common brand name) – 1 to 4 g daily, dose divided
Chamomile tea (Apigenin, luteolin) – 1 to 2 cups before bed
Resveratrol – 20 mg twice daily
Diamine oxidase enzymes (DAO) – 2 capsules with each meal
Vitamin C – may need a non-citrus source such as rose hips – 1 to 3 g daily
I was taking 1 and 5 anyway (together; away from meals; for sleep, inflammation, lipids & blood pressure), 7 seemed to make it worse, like NAC, but adding it has been good. Added 2 (as supp, not tea) and 4. 3 I don't tolerate.
6 would be exactly the enzyme DAO which you don't have enough, and I apparently do have. But I'm still going to try it, maybe it'll help make the dietary changes less extreme. Most products use pigs kidneys and I hate using animals, so I've gone for a plant based type, NATURDAO, which may be less effective. Amazon reviews from Europe and the US are favourable tho.
What Klimas & Chheda is less (still looking for more by them tho): Aside of quercetin and vitamin C also NAC & riboflavin. NAC I've stopped which helped, due to a study saying it decreases DAO but the latter (= B2) I'm taking.

My own personal secret is GABA, after reading that histamine decreases GABA, which is my main supp anyway.
I've increased mine up to 4x.6g/d. Every time my sinuses start burning, I know I need to take the next dose and that helps.

I'd be glad to hear how you get & carry on!