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[sonyalee]

Hello Everybody my name is Sonya and i joined just a few moments ago. I will do my best to keep this short and let you, the readers not having to read a novel! 5 years ago and out of the blue i had a severe burning from both knees down, Gp visit later said " oh its Fibro". I nursed my mum until she passed away and he said the trauma of loosing her caused it. Gabapentin helped the burn and it settled down. I was weaned off this a year ago.
Moving forward.. 18 months ago i discovered i had a heart murmur, this was corrected by Mitral repair. Recently however i am now questioning Fibro as i have developed a whole range of new symptoms as follows, burning tongue and palate, horrible nerve pain throughout body including face, muscle weakness in legs and you can see the skin twitching too.. literally burning, tingling everywhere, dry eyes. My sleep is 2/3 hours a night if i am lucky, another trauma of major heart surgery which in turn has led to a huge flare up of Fibro? I am not so sure anymore. I have to see a Neurologist and waiting on an appointment whenever that will be, so right now i am a little lost, and just looking for, well i am not sure really. All this has been fast, really fast just all in under 3 weeks oh and just to add insult i am 3 days in with Covid! Oh the joys.. anyway i am happy i found you guys and this amazing site so thank you for reading.
Sonya

 

[seniorzala]

Sonja please calm down.
Yes,trauma /stress/ can bring a lot of things to the surface.
Talk to the Neurologist and if possible ask for an ENA7 parameter test/7antigén/
Diagnostic significance:screening for systemic autoimmune diseases/Sjögren A-Sjögreb B etc/
Before that, check with your doctor what medications you recevied after heart surgery
Senior

 

[JayCS]

Hi Sonja - I agree with Senior about getting Sjögren's checked by a good rheumatologist.
And the burning might be neurological, but might also be an allergic/intolerance/immune reaction like MCAS. If it were neurological you could try nerve supps like the good active forms of B-vitamins and good magnesium, praps try to influence the vagal nerve. If not nerves, then supps for inflammation etc., try appropriate diet changes etc.
For sleep I'd get a sleep lab check just in case, and trial the many good supps for sleep as well as using Yoga Nidra/NSDR as very good sleep substitute, and get sun/daylight lamp early in the day....
You say you're lost: docs usually are too, if they can't detect anything, unfortunately. So it'd be good for you to track your burning and insomnia, try to identify, describe and reduce triggers that way.
My burning comes from CoV-jabs and histamine food, my insomnia has >30 triggers, but supps etc. minimize it.

 

[seniorzala]

Igen, érdemes meglátogatni a hisztamin tesztet, bár viszketést és kipirulást is okozhat. Megér egy próbát: sajt, bor, bor, uborka, padlizsánon tilos paradicsom, de addig ki kell zárni az autoimmunt, mert csak találgatni kell Idő.....
Senior

 

[JayCS]

= Yes, it is worth a visit to the histamine test, although it can also cause itching and flushing. Worth a try: cheese, wine, wine, cucumbers, tomatoes are forbidden, eggplants [aubergines], but until then you need to exclude autoimmune, because you just have to guess Time..... Senior

Yeah, that too, but MCAS is not HIT histamine intolerance, so that histamine doesn't show up from the test.
"Forbidden" is the wrong term, esp. for MCAS, you have to be careful with it, but it's good to know/try.
Many of them depend (wine, cheese, meat preparations) on type and age (older & fermented means more histamine). Cucumbers are not high in histamine, at least according to the renowned SIGHI list. The many differences between lists is because histamine cannot reliably be measured, so it's guesswork and experience.
I'm not sure how you mean the last few words, Senior, but I'd suggest considering both histamine and autoimmune parallel. Waiting for doc appointments means time for self-experimentation....

 

[seniorzala]

Igen, az időtényezőre gondolok, nem kell kitalálnia, de kövesse a protokollt.
Senior

 

[JayCS]

= Yes, I mean the time factor, you don't have to figure it out, but follow the protocol. Senior

Ah, like I guessed... so I agree.

 

[sonyalee]

Thank you for your advise and help. I will update as soon as i find anything out. Happy new year to you all.