Hi, before I start I'll just make clear I'm not looking for a diagnosis - just asking for some clarity!
I have a long-awaited rheumatologist's appt in a couple of weeks. I've been waiting since Sept 2019, almost a year, and now it's a stupid telephone appt, thanks to Covid. And I'm not good on phones - they make me anxious!
When the appt was made back last year I was suffering from persistent facial rashes plus increasing muscle pain and breathing difficulties. I was very tired and sore, full stop. This year I have been spared the rashes, although the facial itching (round my eyes) still persists. However, the muscular pains are as bad as ever.
I have them predominantly in my back, mid to upper, with a 'tender point' in my sacroiliac area, which is VERY old. I used to have problems there in my 20's and I'm in my 60's now. How this translates in real life is I feel as if my skeleton can't hold me up. If I stand for any length of time, particularly bending my head, like for washing up or cooking, it becomes unmanageably painful.
I also find exercise difficult. I persist with it because I need to, and I used to love to walk - walked miles all my life - but it has become hugely exhausting. I now get very little pleasure out it, often none, and only do it for the sake of my health and mental well-being.
I get pain in my hips sometimes, and my thighs, have tendonitis in both ankles, and rheumatic pain (so I was informed) in my RH toes. This doesn't help walking any.
In 2019 I suspected all this might have been dermatomyositis, and recently I wondered if it might be the even rarer Glycogen Storage Disorder, but I felt I didn't quite fit the latter and went to look at fibromyalgia (I'd dismissed it last year because of the rashes) and on looking a the NHS site's symptom list discovered I have them all, even rarer ones like Restless Leg Syndrome.
I have bad sleep disorders that really impact on my life and struggle constantly with anxiety and depression. I feel like I'm stuck in a vicious cycle because I try to get fit to get more out of life, but feel so sore and tired I can barely function so feel the whole thing is pointless, which makes me (more) depressed.
My question is how should I approach this appt with the rheumatologist? What do I tell him? I have so many symptoms, from itching through to sleep problems as well as the muscular pain, and breathing issues (I feel my back pain influences these - I have greater difficulty climbing uphill and being able to breathe the sorer my back is) I can't possibly tell him all that. Do I suggest to him I think I might have fibromyalgia? Does it sound as if I might? Or should I stick to a handful of symptoms and let him decide? I do find it very frustrating, trying to get doctors to take the fact that I have a LOT of symptoms seriously. They want me to have just one thing wrong with me, but I don't. I've been trying to get docs to look at the bigger picture since my fifties, without success.
Just as a little more background info (like I need to give you more, sorry!) I have had persistently high ferritin (a sign of inflammation) for over a year and I have subclinical hypothyroidism. No doctor ever suggests treating that though, despite it being very high last Xmas. I also had elevated LDH, I think it's called, a sign of "cell death" - very cheering.
I'd be grateful for any insights on whether this looks like it could be fibromyalgia, and what I should tell the consultant in my, doubtless only 15 minute, phone consultation. Many thanks!
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I think like me you are complicated with so much going on.As soon as you said ace rash I immediately thought of Lupus. Have you ever had any blood tests for this.Alot of your symptoms fit that so Google it.Like me I have lots of symptoms but do have fibromyalgia and rheumatoid arthritis plus other auto immune diseases...you tend you collect them.My rheumatologist is head of it at my hospital so has diagnosed me with everything. You need a good rheumatologist
Note everything down in bullet form. He will ask you when all this started.Tell him you need to be seen as an emergency.Your breathing is not good.Tell him when you were diagnosed for certain things too.
Dont let him fob you off.be polite but firm if he tries to dismiss things.You need help and deserve it.
You could get back to loving your walking if you are given medication to help you.I thought I would never walk again but I do and love being outside
Yes, I thought Lupus too. That needs to be ruled out by the rheumatologist. It could be your rash is rosecea—- mine itches and can be painful. It has spread in the last few weeks inside my nostrils and is now affecting my left eye. Uuuggghhh.
The pain and the “ my skeleton can’t support me” sounds very much like me.
I would make a list of symptoms from worst to mildest and read them to the dr. Also write down any questions, especially Could it be Lupus ?
It’s so easy to forget during appointments and during phone ones even more so.
No. To be honest my GP practice was useless. Moved to another but Covid lockdown hit soon after. Now moved house and new surgery seems helpful so when I can I’ll get an appointment.
I'm sure it's probably the first thing they'll ask you just bc skin rashes (psoriasis) can be an indicator of psoriasis arthritis. As far as I know lots of people have both fibro and arthritis just bc arthritis can upset your sense of pain, quite how they separate the conditions in reality I would have thought impossible as you can have referred pain from arthritis that could present as fibro. If you have signs of inflammation from your blood tests I presume they would deal with that first anyway.
Yes, Cat, doc dismissed it out of hand because I don't have classic psoriasis. I find there is no point in correcting docs (I'd read on the internet, from a reliable source, that you can get it without having classic psoriasis, hence me suggesting it), it only makes them dig their heels in harder and see you as a difficult patient.
Hi Fra. Yes, I'd thought of Lupus some years ago, before the rash appeared, but I was negative for autoimmune testing by the GP. I had the ANA testing repeated in 2019 when the rashes were present, but still negative. It is also not in the right places. I got it round my eyes, on my collarbone, nipple and belly button, rather than across my nose. Psoriatic arthritis was also considered but my doc at the time said it couldn't be that because I don't have psoriasis. According to Google you can get it without psoriatic plaques, but you know docs...
Hi, might be worth asking to see a neurologist. About 50% of fibro diagnoses are thought to actually be due to Small Fibre Neuropathy which can have very varied and diverse symptoms throughout the body and is common in people with sleep disorders. Neuropathies can also affect your iron processing. Dr Anne Louise Oaklander is the person at the forefront - search Oaklander YouTube when you have chance and watch 'Small Fibers, Big Pain' (Radcliffe). My rheum referred me to neuro for small fibre testing. (Fibro symptoms since 12, diagnosis at 50, SFN diagnosed at 54). Best of luck
Hi, just like fibro I guess there are levels - we don't all get all symptoms thank goodness. As far as I'm personally concerned, no-one has been interested in the fibro or has any idea what to do about it. I found out (by doing a genetic test for something else) that I have slow COMT function, which is also linked to fibro. Knowing that, and it being SFN, means that I can do more about it. Nerves continue to re-grow, so if you can find out what is causing your SF(P)N, even if it is more than one thing, you may be able to do something to treat it (eg low or high B6, B12 /folate deficiency, copper deficiciency, toxins (incl chemo) as well as things like Coeliac, thyroiditis, diabetes....) and COMT balances neurotransmitters and oestrogen so important to know if it is working properly. (I checked actual function not just genetic predisposition so am treating what that found). Best wishes
I suppose SFN can be like a canary in the mine then, bet you have to have an alert doctor for that though. I have often thought fibro was code for " go away we don't know what's wrong with you" mind you bc I have chronic migraines I couldn't really be given many pain meds and when I did they didn't work anyway. I've just been given the brand new (to the nhs anyway) CGRP injection for my migraines which may have a positive impact on my fibro as well so you never know. At this point if they could just find a cure for insomnia I'd be happy!
Hi, yes I think Dr Oaklander thinks that a fibro 'diagnosis' means exactly that! I'm hoping my neuro is going to be useful - I only got diagnosed just as we went into lockdown so as yet nothing else said. I can't take medication - react to all sorts, so just treating myself with vitamins, minerals, supplements - all carefully chosen ones that I can tolerate. Far better than I was a few years ago, overall, and at least have some idea what is going on.
You obviously really suffer with migraines and I'm sure have been told all sorts and tried everything so don't want to be a pain - but (sorry) I read something interesting from Micki Rose some time ago about gluten, and particularly in her case corn, sensitivity. Her corn reaction is extreme (mine is far less severe) but she found her migraines were worse at menstruation and although initially thinking it would be hormone or other changes, she identified her tampons etc as the culprit due to corn in the manufacturing. If by any chance you haven't ruled out any food intolerances/coeliac etc as contributory, it might be worth a read. Here is her migraine page purehealthclinic.co.uk/?s=m... and here is the page about corn in sanitary products purehealthclinic.co.uk/2013.... Feel free to mutter things if I'm telling you the same old..... Cheers
I tried gluten free diet at various times no luck. Hormones play a big part, also sleep and stress. I get them 50% of the time in varying degrees. I can only have pain killers 6 days a month bc they cause rebound migraines. Plus morphine etc. doesn't work on me anyway. The only thing I've found to help the fibro is exercise but to be honest that's bc I cope better with pain from overdoing the exercise more than the seemingly random pain of fibro. Eitherway my brain is oversensitized to everything now....
I'm so sorry, that sounds thoroughly miserable. I've been doing lots of relaxation type stuff - meditation, yoga, EFT (tapping), breathing exercises as well as things to exercise my vagus nerve (enthusiastic gargling, singing....loudly!). I'm hoping that the things I'm avoiding, to help support my COMT function (green tea, red wine, chocolate) and the methylated B12 and folate to support MTHFR and COMT, and the detox supplement to help deal with the oestrogen excess and improve liver function will all do a bit to help.
My (painful but not in your league) head has improved, partly I think with the blood thinners. I use a natural Vit E (and lots of ginger) as can't take anything else, which also supports COMT and balances oestrogen, as well as magnesium, which has been a game changer for me (also helps with the histamine issues). I am very lucky as I had an immediate sign that all grains were an issue for me. My best wishes to you, I hope you find some relief.
Cheers, when my daughter was born she had really bad colic I was breast feeding so I ended giving up everything we could think of just in case, you know lactose, gluten, caffeine arc. in case it was getting to her in my milk but to no avail.
Although my specialist said I should be taking 400mg B2 so I'm doing that now. It's only been a week so fingers crossed! Florescent yellow wee though....Obviously I've heard a lot about the vagus nerve but never about heard exercising it through singing, not sure my family could take my singing and whinging.
Yes, I get the yellow wee too! I think it either means we aren't absorbing well or are taking more than we need. A s my vitamins make me feel less awful, I don't mind if I lose a bit of it!
I try to sing quietly when people can hear me or just hum along to the radio. It all helps. Datis Kharrazian also suggests stimulating your gag reflex, and using coffee enemas. So I'm sticking to the singing and gargling! You don't sound like a whinger...we are all doing our best in difficult circumstances so don't be too hard on yourself xx
Yes not keen on any kind of enema!! I prefer my coffee going in the top end generally.
I'm going to start taking all my Riboflavin earlier in the day though bc I'm having loads of problems sleeping and someone mentioned the b vitamins can make you more alert.
Yes, good idea, the Bs can make you a bit wired and more prone to dreaming so better in the morning. Don't affect everyone though. Try some magnesium spray on your skin in the evenings, if that doesn't do the trick x
Wow really because I may not be sleeping but when I do I've been having really vivid dreams! Thanks for letting me know I been wondering whats going on and its nice to know.
I don't know how old you are, Cat, but I'm in my 60s and can reliably testify to the fact that migraines CAN improve. I was plagued with them as a youngster (although I didn't know that's what they were) and they reached their nadir in my 30s, when I had one so bad I couldn't move without vomiting and had to lie in the dark for two days. I couldn't even keep water down. I got them severely again in my fifties when I was put on Lamotrigine for my neuralgia and had an actual 6 week migraine. That was unbeatable. The neurologist was most cross with me because Lamotrigine is used to TREAT migraines and she'd never seen a reaction like mine. I think she was personally offended, especially as she was - ironically - a migraine specialist (and a terrible neurologist). After that, I have had no real incidences of severe migraine. So mine improved with age. Of course, I know loads of my triggers and avoid them (perfumes, heat, noise, etc, etc). Makes you a little eccentric and anti-social sometimes, but beats the hell out of having your head crushed in a vice!
Yes I've had a few 6 week migraines in my time, I wasn't believed until I finally met the neurologist I have now, some 20 years later. I got into a lot of trouble in boarding school bc they didn't believe me either.
My neurologist said they may improve after the menopause, I'm 43 now and we tend to reach the menopause late in my family but still that's a better prognosis than I got before so you never know.
It certainly makes you less social and I'm a pretty neurotic person though what with fibro, insomnia IBS etc it's not surprising. That said I'm a much happier person now that I have names for all my conditions and I know there are other people like me out there even if I've only ever met them in cyberspace! Plus I'm an artist and we're all crazy anyway!!!
Absolutely - being an artist is the best 'get out of jail free' card there is. I used to be a writer and was married to an artist, so all suffering (and eccentric behaviour) is grist to the creative mill!
Forgive me butting in, but lovely to meet someone else who reacts badly to meds. Not lovely for you, of course. As I get older I have worse and worse problems with meds. Even over-the-counter ones. It's very difficult in surprising ways. I was on PIP for years, from the onset of my TN, and in November last year they stopped it. One of the reasons was because I don't take meds. I had to argue the case that this was a disadvantage, not an advantage and it didn't mean I wasn't suffering. I was just suffering without meds! I was, effectively, being punished for not being medicated! My PIP was restarted some months later, but you would think they wouldn't need to have that pointed out to them!
I do actually believe it's better to be without meds, but in all honesty that's strongly influenced by the fact I always get so ill on meds!
Incredible that you had to fight for that, I am glad that they saw sense eventually, but how ridiculous! Loss of tolerance (foods, chemicals, medications etc) goes hand in hand with autoimmune (loss of self - tolerance) and lots of people have issues with meds so you'd really think they would be more aware. I've found it particularly common in Sjogren's sufferers. It seems to be partly an inability to detox thing so I'm working on my liver function to get things out more efficiently, and have cut all my toxin intake so it doesn't have to work quite so hard. I guess the effect will be cumulative so will get worse as we get older unless we can give a hand xx
Yes, one thing I am as sure of as I can be, given that I can't actually see inside my gut (I wish!), is that I've got a damaged stomach lining and gut dysbiosis. I was fed indecent amounts of antibiotics as a child, every winter, for 'sore throats' and I think it must have ruined any possibility of a healthy gut. Not a coincidence, I don't think, that I began to gain weight as a teenager, after being a skinny kid, and developed a lot of other things I think are related to gut permeability and an unbalanced flora. I know from reading I've done on coeliac disease that gut permeability is a given, even with NCGS, so it probably accounts for a lot of the aches and pains too, with proteins circulating where they shouldn't be circulating. I think this creates a lot of food intolerances and sensitivities (probably drugs too) that I (and everyone like me) wouldn't have if we hadn't been given bottles of sickly sweet antibiotics to swig for three months of the year as a child!
So true and same with me - the dairy causes mucous and makes you prone to ear infections etc, I also couldn't hear well or breathe through my nose (until I quit dairy), so had years of antibiotics for that, and for the acne. Aaarrgh!!
Yup they took all my DLA away when they moved from DLA to PIP. I'd had to go to tribunal for my DLA and I just couldn't face another fight, so I'm just quite a lot poorer and kept going into my overdraft for a couple of years til I managed the adjustments.
I know exactly what you mean. When they stopped my PIP in November I didn't even fight it because I couldn't face it. It wasn't until I'd been on Universal Credit for a couple of months and saw my savings dwindle, plus I was having a terrible problems with job search interviews because I was sick all the time (plagued with flu, chest infections and what I suspect was Covid latterly) I decided to appeal it after all. I was very lucky I only had to write the initial letter and they just reinstated my money (plus some extra, which was TOTALLY unexpected). I think, truthfully, that lockdown helped me out because they were just trying to get through a backlog and possibly even, for a wonder, help people out. It certainly made a huge difference to me, for which I am very grateful.
People keep looking at me and say I should reapply. Lockdown has been very mixed for me. Not being to go to the gym has been hard and my mum can't help with the kids bc she's shielding. Although I do like my husband working in the garage and not having to go to various classes and social things for the kids. Bit nervous about winter, but then I hate the cold so always dread winter!!
Me too. I suffer with the short days and always have a big struggle with eating. I'm also more than a tad anxious about getting healthy in time for winter. My 2019 winter was atrocious, with unrelenting colds/flu/infections/possible Covid, that I positively dread catching it (again) this winter when the second wave hits.
I've HATED lockdown. There isn't a word strong enough to describe my loathing, but I have no real idea why. As an 'againster' I have problems with being told what to do and I detest having my freedoms curtailed, but it seems to go deeper, and I really do not have a clue why. Technically, lockdown has changed nothing for me since I'm on my own at home anyway, but all the BS in shops and so forth, and now my struggles with not wearing a mask and feeling judged for it - yuk, just loathe the whole thing.
I keep telling myself to just wear the damn mask and be done with it, but it is SO difficult with breathing problems, and then the anxiety from the possibility of pain taking it on and off, and then when winter comes that will get much worse so I won't be able to wear it then for definite, but all the shops & bus drivers will be used to me wearing it and I'll have to 'retrain' them - so I figured just don't wear it from the outset and you'll get used to being odd-man-out, but it's slow progress. For a non-conformist, I hate not conforming!
I spent the first three weeks of lockdown being so anxious. I wasn't anxious about getting Covid but almost every one of my coping methods was shutdown with Covid. My husbands life, meanwhile, was virtually unchanged, apart from the ultra mean 20% pay cut despite them working on machines that actively search for Covid antibodies. But now I'm a bit worried about Covid too, scarring on the lungs and the possibility of developing ME not great!
Yeah, if you have ANY kind of health problem it's hard NOT to worry about Covid. It attacks the old and sick, yes, but the young and fat, for example, are also prey to it. Old and fat, even if you're not sick, has to be a bigger risk, so it's a bit of a rogue elephant, no pun intended. The fact is, if you're just a bit run down but exposed to Covid too often then it'll get you - that's how we lost otherwise healthy medical staff; too much exposure. It's ironic that the Chinese curse is "May you live in interesting times" and the virus (likely) sprang up there. I, for one, would like to live in very dull times.
Yes interesting times, but not a good way. I was busy worrying about Brexit and the plight of our oceans and natural world in general then Covid came along!
That's a very interesting idea, Bookish, thanks. I have Trigeminal Neuralgia, a rare neurological condition and get a lot of random nerve pain (shooting pains and burning pains in my feet are a favourite, but I also get them in my gut). I'm going to look all that up asap as I've always felt my TN is part of the problem, but no doc ever feels they are connected.
You're welcome, I hope it helps. Sorry if you've already tried but I have read that TN can be a gluten associated condition (be it Coeliac or Non Coeliac Gluten Sensitive) so if you by any chance haven't been tested or tried properly GF it might just be worth investigating. I don't want to be the one blaming gluten for everything (especially as I'm just going to suggest the same to Cat) but the effects can be diverse, as I have found personally. Best wishes
I was tested something like four times for coeliac disease, but negative every time. I even had a different test done because I am IgA deficient and that both makes coeliac disease more likely, but also means the standard tests don't give accurate results. I had to almost break my Doc's arm to get him to do the correct testing and it took THREE times for the lab to actually test for the right thing - that's how used to that testing they are; they almost made me anaemic, wasting tests. Still negative though. It sounds absurd but I was crushed because it would be so lovely and simple if it was just a coeliac issue.
I've thought of NCGS many times and read books on it, because I have gut issues going back to when I was a child and officially have IBS (what they call it when they don't know what's causing your gut issues!), but the idea of trying to get any consultant to treat NCGS seriously or actually test for it? Just no. I actually tried to get to see a specialist in NCGS - a Greek (I think!) doc whose name I can't remember well enough to spell, but was roundly told to p*ss off. I gave up on all diseases gluten-related eventually because it was like saying you were suffering from a fad.
It's very unfortunate that gluten-free has got so emmeshed with dieting and 'health' because there must be many people who have a genuine problem - and yes, I might be one of them - but no doctor can take it seriously now. Unless you have a clear-cut case of coeliac disease you can forget it.
Oddly I'd just been having a similar conversation with someone on the Gluten Free HU site. What you've said really is tragic, because if they got as far as testing 4 times there will be a gluten issue, but they just haven't found it.
Just in case there is anything in it that helps you here is my reply:
Hi. That came from Micki (Michaela) Rose's 'The Gluten Plan, how to test and treat gluten illness' which I have found extremely useful (like her website). I bought the printed book, but you can get it as an e-book. Ideally, you are still eating gluten, suspect an issue, do the test and if positive have your coeliac diagnosis and a doctor who will help you deal with it. But, blood antibodies vary depending on the amount of villous damage. With early damage you may well not show a positive. Also Micki says the test is usually only IgA and you could be IgG (more common in NCGS). As well, mainstream testing looks for 33-mer gliadin which is the most common peptide of about 60 and only about 50% of coeliacs have an antibody to 33-mer gliadin but do have antibodies to other peptides (as do NCGS). It also only looks for transglutaminase 2 and there are others that could be relevant (3 and 6 especially). Even the biopsy, if you get that far, will often be disregarded unless you are stage 4 with effectively flat villi, but you may be at stage 0-3, or they may just have tested the wrong bits to show damage. Even genetic testing could be wider. To quote Micki again:
"..in effect, no test exists yet that looks for all the possible antibodies so any antibody test is going to be limited and a negative result should not end your search for gluten sensitivity. My view is that an ideal diagnosis should be an amalgam of gluten gene testing plus antibodies plus food challenge if possible. However, currently the antibody/biopsy route is all that is recognised by doctors so we have to start with looking for those in the hope of getting a recognised diagnosis."
Here is the link to the e-book - purehealthshop.ecwid.com/Gl... and this is to some of the site's gluten info purehealthclinic.co.uk/the-...
I stopped eating it (no testing), due to reflux, with no clue that it was causing bigger issues. Acne that I'd had for 40 years vanished and on came the lightbulb! (Took long enough!!). I did some gut (stool) testing, again for something else, and had mucosal gliadin antibodies, so early stage but something not right. GP insisted that I have coeliac test although I'd been off for 11 months (too long) and then said 'normal' so not an issue. I actually also can't tolerate corn (quite common and can cause as much villi damage as wheat, but again not tested for - Micki has a major corn issue so lots about that in book and on site - hence TGF, Truly Gluten Free, for those of us that need to be much wider than normal GF). Best thing I ever did and wish I'd known sooner for myself and my mum.
I took matters into my own hands as I felt so ill I didn't know what else to do, and went down all sorts of blind alleys, of course, but I have no doubt that gluten and dairy were two of my big triggers for AI (plus genetic predisposition and stress, stress and more stress) so will not be eating grains again. I'm broke, as a result, but a lot less ill!
That's very interesting, Bookish, thanks. I see the research has moved on a yet again since I last read up on it. I'm not a huge fan of wheat, never have been, even as a kid. I realised only very recently that I can really only enjoy wheat if it's disguised, preferably with something sweet. On it's own, particularly unrefined as in 'healthy' whole-wheat, I really dislike the flavour. Ironically, I hate corn even more. Can't stand the stuff - even as a 'vegetable'. Make of that what you will! But of course, wheat is everywhere and so very damn convenient.
I've gone wheat-free a few times and I always feel better on that regime, but not better enough to put up with the inconvenience, or expense, of doing without it - not without some medical proof I genuinely have a problem..
When I was a kid I had severe constipation, right up till my thirties, unrelenting. It was only in my 40s I first read that whole-wheat might make constipation and IBS worse for some people. I tried removing it, and sure enough, wheat constipates me. I remember as a kid eating bowlfuls of All Bran and wondering what the hell was wrong with me that it didn't work. My gut would swell up and swell up and get sorer and sorer, but nothing would move.
There's no doubt in my mind that wheat and I aren't on good terms, but is it actually making me ill? That's a whole other question!
P.S. I don't know if you know, but chocolate contains a similar protein to wheat and some people who are sensitive to gluten react to it. I couldn't stand chocolate as a kid, but got hooked on it as a sweet addictive food as an adult. I actually hate the taste of the stuff and avoid it now. If I ever eat - again supposedly 'healthy' - dark chocolate I start sneezing like a mad thing and often flush bright red. I also can't sleep for approx' one hour per square eaten. And that's absolutely true. Chocolate sensitivity doesn't begin to describe it....
Hi. If your hopeful NCGS specialist (above) was Prof Marios Hadjivassiliou I'm not surprised you couldn't remember it! Just found him mentioned in Micki Rose's book. Also Alessio Fasano, Umberto Volta and Aristo Vojdani etc. She wrote it after the 2014 Gluten Summit and it was updated in 2017. Wheat and corn are everywhere, which does make life difficult, but not impossible. For me, the benefits vastly outweigh the drawbacks.
Interesting (not for you) about chocolate. I tested as reacting so don't eat it, and it can slow COMT function - mine is already too slow. The book has information about molecular mimicry, cross-reactivity and cross contamination issues - all a bit complicated. Dr Vodjani says:
" Foods that cross-react in vivo to purified gliadin include gluten-containing grains (rye, barley, spelt, kamut), dairy (cow's milk, casein, casomorphin, milk butyrophilin, whey protein, milk chocolate), oats, yeast (baker's and brewer's), millet, corn and rice. A special note about chocolate: pure cocoa and milk-free dark chocolate have many beneficial characteristics. Only chocolate containing milk causes cross-reactivity with gliadin."
From your description I would think it might be a histamine or amine reaction. Mum used to get migraines from chocolate (and strawberries) and although when she was alive I thought it was probably the dairy (like me and a lot of people she was lactose intolerant), now I know about histamine and the oestrogen/mast cell connections that all makes a lot more sense. I read that "people suffering from migraines often cannot tolerate chocolate. Although chocolate actually is quite low in histamine it contains two other biogenic amines, namely tyramine and phenylethylamine, both present in cocoa. Biogenic amines are histamine triggers. In high dozes biogenic amines are toxic to all humans. In general, chocolate with a high cocoa content is more likely to lead to reactions so best avoid dark and bitter chocolate." Just a thought. (I've been paying attention to ingested histamines for a couple of years since it became obvious that I had a problem and now I can see that it has always been an issue, although more minor until hormones went properly out of whack. Mast cell degranulation also triggers nerve pain and so the merry-go-round continues). xx
That is indeed the Prof's name! I've read Fasano's book/s too. He's very good and has been hugely influential in getting NCGS recognised, at least a little bit - you know how medicine is when it comes to adopting new research, a very slow dinosaur.
I've considered histamine issues in the past. I thought it might have been that in 2018/19 when I had the rashes. In 2018 I was reacting to EVERYTHING. I had a terrible reaction to Voltarol, which I should never have been given in the first place, and had a blissful 5 days on steroids where I felt human for the first time since I was in my early forties. All the aches and pains went away, I could walk, I felt cheerful. Unfortunately steroids also gave me a big red balloon face and it was after that that I first started developing facial itching and the rashes. So what was given to cure one rash, on my legs, then gave me new rashes on my face - MAYBE. Can't be sure of anything.
But that all did make me wonder if I had a histamine issue since I'd become highly reactive. I do sometimes think my reactivity is because of a damaged gut and all the aforementioned proteins in my blood making my body overreact to everything. Then again, 3 years ago I split with my partner after 40+ years, and have no friends or family for back-up, so the stress and grief of that was quite possibly enough to drive this whole damn illness spiral anyway.
Much as I grudge saying it, you can see why docs don't want to take on complicated medical histories and lots of symptoms like this.
Interesting - although nothing like so severe as yours, I also had a Voltarol reaction with the worst headache I've ever had. There is no doubt that stress, in its widest sense, is a major trigger and driver of illness. One of the reasons that I got the gluten, dairy etc out of my diet once I knew they were causing me definite problems, as well as vastly reducing my intake of toxins. I know I can't do everything, so I do the bits I can. 40 years is a very long time and that must have been and remain hugely difficult, I'm sorry. I chose to leave my partner after 25 years and that was hard enough, but I was getting worse and knew that in that situation I would never get any better. Micki (rescuing me again!) also has a book called Recovery from Chronic Illness with mind-body medicine which I am gently making my way through. She also was hypervigilant and hypersensitive (chemicals, foods, histamine reactions etc). Not a quick fix, but do-able as she has proved. I'm sure you've read Datis Kharrazian too - I get confused about whether loss of oral tolerance and chemical tolerance come before loss of self-tolerance and autoimmunity, but he certainly seems to encourage us to widen our diet not reduce it (except for known triggers and gluten). Leaky gut he says, is only part of the picture. I had my first (possibly two) AIs before I was aware of the chemical issue, then possibly a third before the food/oral tolerance loss with the chemical getting more drastic. This site and others like it have been hugely helpful and supportive. Yes, reluctantly you can understand - they are simply not trained in that way and don't have the time to get to the bottom of complex root causes. Looking at personal and family histories and joining dots takes someone with a vested interest, usually the patient xx
Yes, I've read Datis, who was also good, as I recall. And you definitely do need to be your own advocate with docs. Which isn't always easy when you're sick (& tired - the two usually go together). I've always been deeply envious of people who have significant others, most usually women, and most usually mothers, who fight like tigers for their children, even the grown-up ones! You need to not be intimidated by doctors and nurses, which isn't always easy since they often cultivate being intimidating!
I've only been hospital-sick a couple of times, both with gallstones, and I remember feeling acutely sorry for (usually older) people who had no-one to fight their corner. I remember vividly on one of my loathed hospital stays I was 'nil by mouth' and I'd had nothing to drink for four days. I was SO thirsty I was ready to cut a vein and drink my own blood, so I told a nurse and they got me drip, which was wonderful. But just think if I'd been too old or sick or had dementia or something. Technically, I shouldn't have had to ask - they should have spotted it and taken steps - but unless you fall out the bed in a dead faint they often don't notice. You do have to learn to speak up, even when they get tetchy with you.
No, it isn't easy - there is often a comment on lousy thyroid care on the thyroid forum to the effect that we are an easy target as we are simply too exhausted to argue our case. Even as a vaguely bright and obviously interested and motivated patient it is hard to keep fighting your own corner. It would be lovely to have that back-up but it just isn't there- more bewilderment, family-wise. That sounds awful and very sad - they should have spotted your need. Mum had dementia and although it nearly killed him, Dad looked after her at home until she died, for which I am eternally grateful. Just noticed the thread has gone into thyroids down below - that was my first contact with Datis, who has such a lot of useful suggestions for things that affect thyroid function that we can do something about other than taking possibly unnecessary exogenous hormones. (Can't tolerate anyway, so seemed a good chance to explore alternatives!).
'Sunburn on the inside' is a great description and sort of fits my feet, but not the rest of me, which is constant static muscle pain and tenderness and has been since I was 12. I don't know which bit is COMT, which is fibro and which SFN so I'm still digging for root causes! Best wishes xx
Sorry - COMT (COM - T) is Catechol-O-methyltransferase, a protein encoded by the COMT gene. COMT enzyme function controls metabolism of neurotransmitters dopamine, adrenaline and noradrenaline and also catechol oestrogens. COMT variants are commonly seen alongside MTHFR and they affect each other. Slow COMT function is one of the variants connected to fibromyalgia. Ideally you want to be hetero for COMT as -/- means you metabolise too fast and +/+ makes you too slow, both can cause issues. Links to oestrogen, obviously, but also mast cell release, nerve pain and SFN, dysautonomia and thyroid (and lots of others). I'd never heard of it and found it while testing looking for other stuff. I suspect that it played quite a big part in me getting to where I am, in that I think it probably expressed early in my life, but don't think it is now affecting me as directly as it was - gene expression changes. Hope that makes sense x
I shall look COMT up; it sounds interesting. Isn't gene stuff fascinating though? I found out during coeliac testing many years ago that I was (partially) Ig A deficient. The doc was not remotely interested in it, but it makes it more likely that you will have gastrointestinal and respiratory problems and it makes it more likely that you will suffer from autoimmune conditions. I have IBS and I'm reactive to every drug known to man, it feels like sometimes, but not a doctor ever cares or takes it into account. It's a bit like you've only got one leg but your doc insists on treating you as if you have two!
Have you had gene testing done then? I know you didn't get that done on the NHS (did you?!) When I thought I might have a coeliac issue I came VERY close to getting it done out of sheer desperation, because I was so convinced it was my problem and the NHS just weren't interested. But it's pricey and I came to realise that even if I was found to have the genes that 'predict' issues with gluten it would make zero difference to doctors or being treated for it.
Hi. It is fascinating but complicated and of course only shows you a disposition, not an effect. Many SNPs have no negative health effect and some seem beneficial in combination. You still need the 'trigger/s' for the genes to express. I did do some genetic (genomic) testing but only because I had good reason to believe (from my own history and family) that I had an issue that I wanted to check (normal blood tests) - consultant didn't agree and wouldn't do them, and I couldn't get the blood taken privately in the timescale (as I was off all supplements and getting much worse, rather fast). So I did a basic genetic (swab) test and a liver function/detox (urine) test, as the best way that I could find to test the same things but without blood. I was right in what I suspected, but found a lot more in the process. It wasn't cheap but wasn't ridiculous either and it was desperation. Gluten genetic testing does seem pricey and I haven't had that done. I know it is an issue for me (partly because of the effects of stopping, and history again, and I did a gut test some time ago which showed raised anti-gliadin IgA) so am happy to stop and did so 3 years ago (although it took a while for me to work out that cross-reactivity etc was an issue and I also react to corn and a few other things). I had been off for too long when the NHS decided to test me and tests are not conclusive anyway. I thought NICE guidelines did permit HLA testing but have no experience, someone else may have tried. The IgA deficiency must make things more difficult. Micki Rose's book goes into a lot of detail about testing . I think the genetic is about £300 plus postage to the States, way out of my league. Here is her page in case you haven't seen it. purehealthclinic.co.uk/trul.... Cheers
Thanks for that - just going to go check it out. Very best of luck with your many issues. I admire your optimism and tenacity (not to mention the sheer graft you put in to do right by yourself) in the face of it all. I shall aspire to become just like you one day!
That made me smile - thank you! Quite frankly, compared to many on here (you included!) I think I am very lucky, getting off lightly, and have no reason to whinge as often as I do! I do try to remain hopeful and optimistic (partly because it does actually make me feel better) and doing things to help myself and to understand what is or has been going on makes me feel a bit less like I'm floundering out of control. Sometimes I don't manage it but I try - sheer bloodymindedness gets me through. I think you are doing just fine. I too wish I had learned to drive but can't see me being brave enough to try now so I'm very impressed that you are considering it. I hope your 'mask' badge has arrived and that people are kind and you get less hassle. I wish you all the best with your rheum and am off to read about Spoon Theory! xx
Everything I read on your post is Like me ( diagnosed with fibromyalgia & ME around 6 years ago)
I was a fit nursing sister for years & years so I know where you are coming from !
Lupus came to mind when you said facial rash too , however my fibromyalgia started initially in my sacroiliac area ?!
I would bullet points what you need to get across , I get very breathless when I’m totally exhausted and struggle with that , I would ask for an urgent face to face appointment too !
Yes, NB, breathlessness is a big issue for me, and one I find very embarrassing. I can get out of breath washing up, no kidding. It comes and goes and is markedly related to the level of pain in my back and also to sleep deprivation. If I am sleep deprived (very common for me) I get MUCH sorer and have a kind of bone-deep fatigue that makes it very difficult to do anything physical. I hate having to climb hills if I'm sleep-deprived because I am panting within minutes. I live on a hill and have to climb it to go catch buses. I often hold my breath when I'm passing people because I am ashamed of how much I am panting.
In winter it can be, literally, a major pain because I have trigeminal neuralgia, which I have inside my mouth, so if I have to breathe heavily in cold weather I have to cope with pain inside my mouth firing off as well as not being able to breathe. And of course, just now, I am disapproved of everywhere I go, and always having to justify myself, because I don't wear a face mask. I don't know why, since it really isn't anyone's business, but I find that being judged constantly as 'a selfish bitch' is adversely affecting my self-esteem. I just bought myself a badge saying "not all disabilities are visible" to try and stop people giving me the evil eye in shops and buses! Tragic, really...
Oh dear I’m sure people aren’t judging you but I know when I’m out of breath which is quite often for no reason ( on days I’m feeling totally exhausted is it at it’s worse ) you do feel self conscious but try not to think what other people think and concentrate on you ! ( I’m laughing saying this to you as I’m the one worried all the time about what people think of me 😉!)
But really say to your telephone appt dr that you really need a face to face appt as you can’t go on feeling the way you do !
Best of luck and take care !
Do let me know how you get on , my appts are telephone now from my consultant in pain management but it’s not ideal I know 😘xx
Oh, they SO are judging me, at least when it comes to not wearing a face mask. Can't wait for that badge to arrive. But it probably won't stop it; I'll just feel 'safer' - ludicrous but true. I have a disabled bus pass and a bus driver queried me very shortly today (the first, in fairness) WHILE processing said disabled bus pass. He then grunted grumpily at me, all the while his face saying 'a likely story'. Obviously putting two and two together is not in the manual...
Hi hope your ok I suffer with fibro have done for years was diagnosed by rhemertologist 7 years ago I have chronic pain all over and severe fatigue I struggle to lose the smallest amount of weight I also have bipolar and believe the two can be linked just make sure your truly honest describe your worst days aswell and explain the impact it’s having on your life it took me years to get diagnosed and I cried with relief when I finally got a diagnosis not that it made a difference but I felt like I was imagining it and that’s how I was made to feel write down everything aswell gentle hugs x
Thanks, Bexxsy. I have the same problem with weight. Have done for some years now. I cleaned my diet up a lot and gave up sugar about two months ago. I lost 2-3 lbs. Then about another 3 lbs over that time and now nothing more is coming off. I don't want to go on a diet because I believe years of dieting did this to me, so I'm just persevering with healthy eating and about to add some fasting into he mix because I think it's a safer way of correcting insulin resistance. But it is very much an uphill struggle.
Thanks, Niretro. I have my reservations about the wisdom of suggesting fibro because a lot of docs are still skeptical about its existence, despite it now being made 'official' on the NHS site. I don't want to give them an excuse to write me off. I've been trying to convince docs I don't feel well for years and that I shouldn't hurt this much or have this many problems, but I just get dismissed as old and female, both good excuses for getting rid of women patients!
I would look into your thyroid issues more, get your blood test results and ask for B12, D and folate to be checked. Don't be fobbed off with a 'normal' result. The Thyroid site on here is an excellent resource too. Good luck.
I agree with klr31. The thyroid is a frequent culprit for such issues. Sub-clinical hypothyroidism can cause a lot of symptoms. Even if your lab results are within the "normal range" you can still have symptoms. Those ranges are too broad. I would join the Thyroid site on here and ask for advice. Untreated hypothyroidism can cause symptoms which are sometimes diagnosed as fibromyalgia, which then go away with proper thyroid treatment.
I've had sub-par thyroid tests since my fifties, possibly longer. Allegedly, it runs in my mother's side of the family, but doctors just won't treat subclinical hypothyroidism. I believe they've done research showing it 'doesn't really help' when it's subclinical. Not sure what that means, exactly, but the NHS just won't treat it.
Unfortunately most doctors don't pay attention to the patient's symptoms. I would still write in the Thyroid UK forum, telling them everything, including what you just wrote here. They'll be able to guide you in terms of how you can speak to your GP to get better treatment and testing, or they can send you in the direction of a doctor in your area who is more knowledgeable, they can guide you in terms of what other tests you could ask for, and more. They are very helpful.
Yes, they are a very helpful bunch. I've been consulting with them on and off for some years and they are very knowledgeable. I'm just about to ask them about best times for testing so I'll see what help they can offer!
Hi Chancery,
Very difficult to get Doctors and Consultants to base diagnoses and treatment on a holistic approach to a person’s symptoms. Trouble is, they are all ‘experts’ in their own fields, but many illnesses have similar or overlapping symptoms, and you may have more than one illness. Despite all you have been through (my sympathies) your care team may have to rule out other conditions before reaching a diagnosis of Fibromyalgia. As you probably know, Fibromyalgia has not always historically been taken very seriously by some health care professionals. However, times have changed and as more research was available, attitudes changed. Unfortunately, treatment is limited, and there is no cure. Medication and therapy can help, and you can minimise the symptoms some of the time, and manage the rest, the rest of the time. Although I would not immediately have thought Fibromyalgia from your description, it is NOT an easy thing to describe. I used to tell my GP it was like having ‘sunburn on the inside’ with sharp wandering pains all over. It still took years and more than 1 GP to diagnose. If you find you have ticked all the boxes for FM, it might help to let your GP know. Good luck, I hope this helps.
"Sunburn on the inside" is a fascinating description. That sounds like nerve pain almost. I think it was Bookish up above who mentioned Small Fibre Neuropathy - I assume you've considered/ been tested for that? Mine doesn't feel like that. Mine is an ache not unlike sore muscles from activity, except there's no activity! The muscles literally feel overused, like there's too much lactic acid in them all the time, and the pains definitely don't wander. Mine are consistently sore, unrelentingly sore, in fact. Maybe fibro isn't a good fit!
Fibro affects different people differently, and, as I said in my longer post, your description could have been me talking, so don;t be put off -it could be fibro you have -I dont get the very sore hands, painful tingling or anything like that -I get the dreadful muscle ache, all up my spine and across my shoulders and into my head -hard di differentiate between my arthritis and Fibro, but medics say it is the fibro. My medication is Gabapentin 600mg x 3 times daily, Zapain 30mg/500mg -2 x 4 times daily, tramadol 400mg 4 x times daily and Naproxen 250 up to 3 per day Even though I have done nothing, the unexplained tiredness, not being able to get words out that I want to say(Brain fog) not being able to stand or walk, getting breathless up hill more so than on the flat or going down,pain when I stand washing dishes so bad I have to sit down -I used to get so frustrated but I accept it whenever it happens and pace myself. Fibro does change your life and your outlook but you can still have a good life- even with it
Gosh, your symptoms do sound like mine! But you're on SO many drugs. That must be hard, and it definitely won't help your brain fog, especially Gabapentin. I've used that in the (fairly recent) past for my trigeminal neuralgia. Not a bad anti-convulsant, as anti-convulsants go, but they are still tiring, fuzzy drugs. My biggest problems with them were ataxia and a LOT of cognitive issues. Couldn't count money, lost words all the time and had quite a lot of issues with dissociative states and hallucinations. I got used to them and they were quite interesting in a bizarre way. But I had a very slow allergic reaction to them (Carbamazepine) and had rashes, bad nausea, migraines, etc, etc. I was VERY lucky that I discovered B12 deficiency and fought really hard to be treated for it and it worked (most successful medical treatment I've ever had - and it was me who did the research!). My TN is managed by them and me putting up with the the little flares I still get without meds. I'm so used to shock pains in my mouth, and facial burning, that I don't even really notice it now unless I get a really bad one. I consider myself exceptionally fortunate on that front. Lots of TN sufferers never get respite.
You sound just like me Chancery, everything you described is me to a T. It used to make me feel really bad, lazy, unfit, a sloath, etc etc - for this reason it was a relief to be diagnosed with fibromyalgia, although I had never heard of it until the diagnosis (I also have osteo arthritis and muscular dystrophy -so another diagnosis on top of this floored me). However, I have to say, joining together with like minded and experienced people, is very useful as they really understand what you are going through. Even GP's do not really understand. In respect of your appointment -if you could get a virtual meeting via zoom or similar, what I did when I went to see the rheumatologist, was take with me a drawing of a body, front and back and I coloured in red the places where I was experiencing pain -the worse the pain, the harder I coloured so the red was deeper. (ifthat makes sense?) both the specialist, and later, my GP, found this to be very useful. I am on a cocktail of pain killers nowadays and they do help somewhat -but I do simply manage my paid nowadays and when I am doing anything which requires walking, consider using a mobility scooter-especially on holidays, read up on it and get to know yourself and, above all, be kind to yourself. Also, have you looked up the Spoons Story> arizonapain.com/fibromyalgi....
That's a great theory, Ronnie. Absolutely describes it. To a T. I have quite a bit of variance in my days. Some days it's a spoon to get showered, but it's ALWAYS a spoon to get out of bed (one of the single biggest stumbling blocks in my life - getting out of bed). I would say I have about three spare spoons a day, tops. I can get up, shower, wash up and then after that it's how I'm going to spend my three spoons. On tired days there isn't any and I sit on the sofa all day, which I hate. On good days I can go out, either walk or shop (not both) and then cook a meal (not from scratch though). If I cook from scratch it HAS to be in the morning because I'm not capable later in the day. So it would be wash up, cook, shower, go out and that would be my day done, and a very productive one. The bad days are get up, wash up, sit.
I have a load of leftover stuff from my previous life and I've had it piled in the corner of my room - loathing its existence every single day - for 3 years. And the reason is because organizing selling it is just SO monumental, along with all the normal 'spoons', that I've yet to find a strategy for getting rid of it. I can't afford to just throw it away, so it just sits their and depresses me. I look like a (very low-key!) hoarder when I'm so not.
I'm not at the mobility scooter stage yet, and hope not to ever get there, but I have looked at getting a car (and learning to drive, at 63!) so that I don't end up stuck at home when I'm older. I heartily wish I'd learned to drive as a teenager.
But you are absolutely right about all the self-castigation you go through. I think I can fairly say I've struggled really hard with this over the years. It's hard to say when my troubles truly started, but I suspect around my mid-forties, although they didn't become truly problematic till I was in my fifties. That's when I first started to notice more fatigue, more pain and began to struggle with apathy and avoiding things. During those years I felt VERY bad, as regards comparison with others my age and my partner. He wasn't understanding, but, in fairness, even I didn't understand why I felt like that. I did try suggesting Sjogren's, coeliac disease, any old autoimmune issue to my doctor at the time but he told me I was "the worried well", i.e. 'there's nothing wrong with you, you're just thinking yourself into an illness.' I would agree with that if I hadn't been so damn tired. It wasn't until I left my partner and was struggling on my own, and I started to get really poorly, with back pain issues and a year spent covered in rashes that I forced myself to a (new) doc and said I needed to see someone who specialised in autoimmune issues (that's what I suspected it must be because of the rashes and my high reactivity to drugs).
I've always been 'unlucky' that I get negative blood tests all the time. the only thing I ever turn up in bloods is mild subclinical hypothyroidism and, latterly, high ferritin. That last one was discovered entirely by accident and the docs who knew about it left it a year and didn't tell me. I only found out when I requested copies of old blood tests! Yeah, really looking out for me there. But basically, I never have any proof of anything, which means docs just look at me as if to say "You're old, woman, and fat. Of course you feel sick." Unfortunately, being female, older and overweight is like handing them a get out of jail free card.
I've taken a lot of major steps to improve my health, lost weight, eat FAR better, try to exercise as much as possible and while some things have improved (skin itching and cystitis type pains I had, most notably) other things like the muscular pain and the fatigue have remained untouched, which means they're nothing (or not a lot) to do with my sex, age or weight. And I intend to tell the rheumatologist that! I'm putting the work in, but something is amiss somewhere.
Sorry, that turned into a load of venting! But thanks again for the Spoon Theory - I'm going to use that with the rheumatologist. It's very descriptive.
I have all of this, and my blood test came back and my GP sent me to a hematologist where more test were done, it turns out I have the Jak2 mutation and possibly PV they are doing more test now. I’d get a full blood count done first so you have something to take to show the rheumatologist
Ah, your advice came to late, I'm afraid. I saw the rheumatologist almost 2 months ago, but still have not had a formal diagnosis (i.e. no report has been sent to my doc). He did however mumble that I had fibromyalgia and maybe Mast Cell Activation Disorder. Big whoopee for me...
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Could it be fibromyalgia 
Could I have fibromyalgia on top of diagnosed autoimmune conditions?
Is this Fibromyalgia? 
FIBROMYALGIA 
Doctors & fibromyalgia 
