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Autoimmune disease

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Talk to me about fibromyalgia

9 replies

15MinutesWithYou · 20/08/2017 18:45

Hi all

I wonder if anyone can help me with advice/info.

After much fighting various GPS I am finally seeing a rhumatologist at Guys this week. I have been ill on and off for years- ever since I had glandular fever when I was 17 in 2002- but it's been especially bad since the birth of my second daughter last year.

Symptoms are poor absorption of iron and as such, low iron. I am currently on a count of 4 after more than 9 weeks on 6 20mg tablets a day.

I have aching and painful joints but did not test positive for rheumatoid arthritis (been told I may have ceronegative RA).

I am very tired all the time, like three naps a day tired if I could get away with it (both kids sleep through). Still feel tired after 14 hours sleep.

Migraines that have now been rediagnosed as possible cluster headaches.

IBS and acid reflux. Had a colonoscopy and the other one (laposcopy?) all fine. Also had gall bladder checked as had pain in that area. All okay.

Does this sound fibro-like? What is the Rhumatologist likely to ask/do? I feel like a fraud as all tests seem to come back clear but I'm permantly ill/tired/stiff and immobile and it's getting me down.

Thanks in advance for any advice or experiences you can share.

OP posts:
mypoornips · 20/08/2017 18:57

Have you had an endoscopy to rule out coeliac disease? Fibro & CD are often misdiagnosed.

15MinutesWithYou · 20/08/2017 22:25

Thanks for replying. Yes, I'm not a coeliac or at least I wasn't five or so years ago. Can you develop it? How would I know. I'm not losing weight which I thought was the thing that proves that...?

OP posts:
15MinutesWithYou · 21/08/2017 15:29

Just bumping in case there's anyone else out there with any advice.

OP posts:
mypoornips · 21/08/2017 18:38

Yes you can develop it at anytime.

Aside from the migraines, I had all those symptoms as well as peripheral neuropathy in my hand and feet.

They also thought I had gallstones, I had an emergency endoscopy for it and the biopsy showed CD.

mypoornips · 21/08/2017 18:38

I didn't loose weight or have IBS but was very windy.

PootlewasthebestFlump · 21/08/2017 18:42

I have FMS and also am an NHS clinician treating it.

You sound very typical of FMS however I agree it could also be coeliac or B12 deficit ensure they are tested.

PootlewasthebestFlump · 21/08/2017 18:44

Sorry, meant to add your rheumatologist may refer you to a team teaching things like relaxation, mindfulness and CBT all of which can help manage symptoms.

I've managed IBS through FODMAP and VSL3 supplements.

The B12 treatment has massively improved my fatigue but it's still pretty bad.

Fixmylife · 21/08/2017 19:15

Have you had any blood tests to check your thyroid function?

purplecollar · 06/09/2017 15:04

I have Fibro, diagnosed last Autumn after two years of being unwell. I think they like to rule out everything else it could possibly be before diagnosing it. There is a huge list of symptoms - I wish I could find it to show you. But a lot of them ring true for me. Generally I think they say it's defined as constant pain in al four quadrants of your body for over three months. The symptoms I have are:

Feeling stiffness in arms/legs when you've been sitting or lying for a while. Which goes when you've moved around a bit.

Extreme, burning like pain in muscles - usually arms or legs. Sometimes pins and needles and swollen hands. Chest/rib pain.

Inability to sleep. I'm not sure if this is one - I think it's "sleep disturbance". But I'm regularly still awake at 3am, unable to sleep. They think you don't reach the third phase of sleep or something which leaves you still unrested when you wake up.

Dry eyes - mine randomly stream bucket loads - when I'm not crying.

Sometimes I can't bear people touching me because it literally hurts. It's like an oversensitivity. If I bang my foot or something - it hurts much more than it should.

The fatigue is quite different to that I had when I had chronic fatigue a few decades ago. With the CF I could sleep for 15 hours at a time and wake up feeling tired. With this - it's more physical. I can be walking home and hit a barrier where I really can't put one foot in front of the other. It's like wading through treacle. My hips and ribs feel like they can't hold the weight of my body. If I've overdone it in terms of physical activity my body goes into this juddering phase. You can't see it but it feels like my whole body is shaking inside.

Bladder irritability.

Brain fog - I used to be a very accurate person administratively. Now I make mistakes frequently. Things like paying money onto the wrong credit card. Not understanding for ages why a password doesn't work - later find out it's the password for something completely different.

It's hard to say because I think different people have different symptoms and there are loads of them. But the rheumatologist will do a series of tests to rule out things that can be tested for first. If your GP hasn't done blood tests, I would ask them to. Because as people say, some deficiencies can cause some awful symptoms.

Fibro is not a particularly good diagnosis to get. There isn't really anything they can do for you - except painkillers and pain clinic. It's a bit of a life sentence. You have to adjust your life to cope. I've not worked since the new year because I can't. I'm trying all sorts to get to a point where I could work part time. Gluten free, regular swimming, relaxation, zero stress.

They don't really know what causes it. Things suggested are sleep problems, having had chronic fatigue in the past, gluten sensitivity (not necessarily Coeliac) and more recently they seem to be making links with having the TVT operation (which I've had) - amongst many other ideas.

I hope you find an answer soon. I think the limbo period where they're trying to find out what's wrong with you is the worst actually. But many of these things take an age to diagnose.

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