Fibromyalgia Despair

[LambriniBobInIsleworthISeesYa]

Hello all

I hope that somebody can help me and apologise in advance for the length.

I have a chronic illness of some kind although never really diagnosed with what… first it was lupus but then they reconsidered that diagnosis after a few years and it’s now Fibromyalgia, which I know is more of a diagnosis of exclusion (e.g. we don’t know what it is).

For 20 years or so I’ve been “weak” as it were (I’m 41 now) and had glandular fever when I was 17 but the general crap health didn’t start for a few years, so not sure if that was the trigger.

I catch absolutely everything (I’ve had cobid 18 times!) and suffer from frequent infections. Mainly of the ear and UTIs but also sometimes chest and various skin infections (I have eczema and it gets infected). If I catch a cold I know that an infection will follow; as I say, usually of the ear but sometimes the chest and less frequently the throat. I’m often on antibiotics but 1000mg of Clarithromycin is my drug of choice and usually gets me out of an infection hole. I’ve had 33 sets of antibiotics this year.

I’ve been seen by immunology but they can’t find any clinical reason for the frequent infections. My blood work is often a mess with low iron and feratin and high platelets and white blood cells. Again, I’ve seen a haematologist but they’re stumped. I’ve had several blood transfusions over the years and always feel like a new woman after them. The healthiest I’ve ever felt was when I had my eldest child and I was given a 8L transfusion due to a haemorrhage. I felt like my body had been replaced by a better one, but whenever I’ve described this high after a transfusion it’s dismissed by doctors.

I’m a bit overweight (size 16) but not massively. I’ve tried to lose weight this year but I can’t get it off for love nor money. I’ve lost weight in the past but I don’t know if the lack of losing weight this year is because of how weak and ill I’ve been. If I exercise in any way I am wrecked for a couple of days.

My sugars were high a while ago and sugar was in my urine, but I’m not diabetic that I know of.

I have two kids and a demanding part time job and this illness is really fucking up my life. In the depths of my despair when I’ve big a bad infection I genuinely think about killing my self. I’ve just had a bad bout and I couldn’t eat, couldn’t sleep, had a fever of 40 and was a mess. I really had a while where I thought “I could just get rid of myself and solve all of this”. I’m not generally suicidal but I do have diagnosed OCD which I take Sertraline for, which gets worse when I’m ill and I have ADHD as well (although don’t take anything for that). I take pregabalin for pain and tramadol, naproxen and codeine for generalised pain but I’ve had a stomach ulcer so have to be careful with the naproxen.

I feel like I’ve exhausted medical professionals and am at the end of my rope with it all. Does anyone have any experience with anything like this, know of any drugs that work for Fibromyalgia that I might not know of or generally have any advice.

Anything is appreciated.

I wish I had some advice, OP. This sounds incredibly hard. I’m amazed you’re able to do what you’re doing, working and looking after 2 DC.

It’s so hard to be so ill for so long and not to have a clear idea why, or anything you can tell people that they will understand.

Have they checked for IgA or IgG deficiency?

Thank you for replying @VoltaireMittyDream- it is bloody hard but I really appreciate you answering.

I assume that they did in the immunology dept but I was never told. Is this something that can be treated if there is a deficiency ?

Hi @LambriniBobInIsleworthISeesYa

I have fibromyalgia. Was diagnosed by a rheumatologist about 3 years ago. I'd never heard of it.

I've tried Duloxetine which is an anti depressant but has had good results in some people. Unfortunately side effect of restless legs meant that I couldn't sleep. But not everyone gets this.

I now have buprenorphine patches for the pain. I have to pace for the fatigue.

There's a doctor on Instagram Dr Ahmed who posts about this and i think there's new meds in the pipeline. Will see if I can find out the name.

if theres a hydro pool near you,that can also be helpful. I do very gentle exercise which has helped keep me mobile and given me new friends with similar problems ( I have found the isolation to be the worst problem).

Happy to answer any questions. Good luck xx

Hi @LambriniBobInIsleworthISeesYa

Drug is called Tonmya. It's a sub lingual tablet. FDA approved it last week.

Dr Ahmed is dra_says on Instagram. He also has a weekly newsletter which you can sign up for via instagram.

I have it and its dreadful, big hugs OP. Nothing really helped except excluding artificial sweetners and msg. They seem to trigger a flare up on some people so its worth a try. It was the single mistake impactful thing I tried tbh and I've tried most things, even having amalgam fillings replaced. Oh, vitamin d tablets made a noticeable difference

I've had fibromyalgia combined with ME for a long time. It sucks, really. The hardest time was when my 5 were all younger and being HE.
The most helpful things for me (and my sister who has it, too) include giving up caffeine, alcohol, white carbs and added sugar. Kind of sucks the joy from life but it's better than the alternative.
I do yin yoga every day which helps a lot with retaining mobility and with just generally relaxing my muscles.
I take a daily vitD supplement, magnesium and have a a 12 weekly B12 injection. I'm on a lot of drugs for various things but the one that helped the most was when I changed over to Duloxetine from citalopram. Have you had your thyroid function tested?

All I can suggest is pacing, supplementing and just listening to your body.

i was diagnosed with fibromyalgia and cfs. After years of suffering I cut out gluten and my symptoms massively improved. I’ve also been working on improving my gut health which is also helping. Drinking kefir, taking probiotics and generally eating more fruit and vegetables, seeds, grains etc.

I presume they tested you for common variable immune deficiency with all those infections? I have an autoimmune disease and whilst I might get more infections when flaring, it’s certainly nothing on that scale.

I would start looking at your diet and concentrate on improving your gut microbiome which must be absolutely trashed with all those antibiotics that you’ve been on. Zoe is a good start to have a good read up on what you should be eating to calm that inflammation and improve your over all health.

I eat clean, gluten free. Take vitamins B, C as and D as well as magnesium and Gabapentin to help with sleep. I walk, swim and dance. But I still feel quite rubbish most days.

Have you ever had anything like 23 and me genetic testing? I found out I had a genetic fault that might account for my symptoms. It's called AATD. It's treated with blood transfusions everywhere else in the world (not in the UK though unfortunately).

The Epstein Barr virus (glandular fever) is responsible for a host of nasties in later life. Like you I caught it at 17. I’m now 58 and have been plagued by a practically non-existent immune system all my life. I tired everything.

Recently I saw an immunologist who did very detailed blood tests on me at a cellular level and I was finally told the reason. Most of the population contract the virus and carry it forever at a low level. In some it can cause long term problems and my marker was x 3 the level it should be. It’s also responsible for a host of issues. I’d be happy to give you the name of my consultant if you pm me as I am on anti viral drugs and can feel the difference for the first time.

I know how debilitating fibromyalgia is as I once had a friend who had it. I wish I could be of more help.

This doesn't sound entirely like fibromyalgia, although I think that is what they decide when they're a bit stumped and don't want to look further. It may sound dramatic but have you been checked for sickle cell disease? Not all symptoms have to fit into one diagnosis as people can have more than one thing at a time. Have you done your own research into your symptoms, as I find doctors don't connect things all the time or think outside their own wheel houses.

Have they done tests for vasculitis?

Autoimmune diseases are notoriously difficult to diagnosis in most cases. Hopefully more research will be done in future that will shed more light on fibromyalgia (so it won’t just be a diagnosis of exclusion) and there will be better treatments for those suffering from chronic fatigue / pain / inflammation.

This sounds really awful.

Has ME been considered at all? What stands out to me (ME sufferer) is where you say ‘if I exercise in any way I am wrecked for a couple of days’ . ME can mean a weakened immune system, exercise intolerance, delayed onset of symptoms after exercise, extreme fatigue…

Not that a diagnosis of ME is a solution to your problems, as medicine has no answers for ME as yet, but if you did have it, it might be helpful for you to know.