Advanced search

Mumsnet hasn't checked the qualifications of anyone posting here. If you have medical concerns, please seek medical attention; if you think your problem could be acute, do so immediately. Even qualified doctors can't diagnose over the internet, so do bear that in mind when seeking or giving advice.


(20 Posts)
drinkyourmilk Sat 08-Mar-14 20:51:41

Can anyone recommend sources of information wrt fibro? I have just been diagnosed. The rheumatologist thought it was AS at first but this has been ruled out. He basically implied the fibro is all in the mind. I've been told that I can't continue on Naproxen, which has stopped the awful night time cramps. I'm feeling a bit lost. I will go see my GP who is amazing but appointments are like gold dust, so could be a while. It's NOT in my mind. I'm exhausted constantly and night time pain is unbearable.

RockinD Sat 08-Mar-14 21:17:41

However, fibromyalgia is a symptom and not a diagnosis, so someone needs to start working to find out what is causing this symptom.

Have you had your vitamin B12 and folate, vitamin D and ferritin tested and also your thyroid? That's always a good place to start.

It is also useful to consider whether you have had a period of prolonged stress or a shock to the system immediately before your symptoms started that may have affected your adrenal function.

My understanding is that Naproxen is an anti-inflammatory, and if you have been told you have fibro, one of the diagnostics is that although you have pain, you do not have inflammation. No inflammation, no need for an anti-inflammatory is the thinking.

I hope you manage to get things sorted out, because this label will basically consign you to the scrap heap unless you dig down and find the cause and deal with it.

I speak as someone who was, like you, exhausted and in a great deal of pain. I had reached the stage where I couldn't manage the stairs at home and I thought I was on the downhill slope to disability. I was diagnosed with CFS, but actually had severe vitamin and mineral deficiencies and also an underactive thyroid. Four years later, after nine years of illness, I am almost completely well.

flow4 Sat 08-Mar-14 23:18:10

I've been looking for info on fibromyalgia too, because I discovered that my former GP suspected I have it as well as the arthritis and hypermobility syndrome that cause other problems. The UK Fibromyalgia website is useful.

There was new research published last summer that suggests FM may be caused by extra nerve fibres around blood vessels, making the skin more sensitive to pain
(link) . However, this research hasn't really influenced many doctors, who often still seem to think FM is 'all in the head'.

Like RockinD says, there's usually another underpinning problem with FM. It's def worth getting yourself checked for vitamin D deficiency, arthritis, hypermobility syndrome - and probably other things too - just in case. Hope you can get it sorted.

Freckletoes Sat 08-Mar-14 23:46:10

Get yourself googling and on FM forums-FM presents in so many different ways in so many people you will find comfort in being able to say "yes-that's the same with me"! Also look for USsites as they are so far ahead if the UK in chronic pain syndromes and FM, CFS etc.
Fibromyalgia is a syndrome and is a diagnosis, albeit one of exclusion. I would disagree that there is usually an underpinning problem with FM. If that were the case so many more of us would be "cured" of it.

drinkyourmilk Sun 09-Mar-14 09:20:44

Thanks for the replies. I'm not sure if it is fibro as Naproxen really helps. I've only been off it for 2 days and my back is very stiff and sore already. Maybe it was the placebo effect though? Ibuprofen has never helped, paracetamol in higher dosages has.
It was given to me as a diagnosis as they have ruled everything else out, no inflammation on the MRI, blood tests all normal, x rays normal. I used to have a vitamin D deficiency but it's fine now and has been for nearly 18 months.
My symptoms have been ongoing for 6 years at least.
I am constantly exhausted, it gets so bad that a couple of times a month I kind of collapse- can't do anything and feel a bit out of it (been told this is fibro-fog). Have stiffness all day, worse in morning and evening, pain throughout the day, which is worse first thing, at night and evening. It is transient (reading online suggests this is flare ups), effecting my thumb joints, neck and shoulders, lower back and hips and ankles the most. He prodded certain areas and that was very painful (though I dispute that as a test- of course it's going to hurt! ), I am pretty volatile emotionally, have had depression and was treated for 3 years with citalipram, quick to tears, I have terrible spacial awareness when I'm walking around, always bumping into things and it really hurts. Very sensitive to noise, I frequently have to leave the room if the TV has been on a while, and get exhausted if I'm doing something that's noisy or busy- it's like I become overloaded.
Firstly-thanks if you've read that essay! Is there anything specific that you think they should be testing for? I would love there to be something they can actually treat or fix!

drinkyourmilk Sun 09-Mar-14 09:26:44

I've Googled but feel a bit of a fraud posting on the FM sites as I'm not half as bad as some of the people on there. I'm still working full time for example. Though I think I'm going part time by the end of the years when we can afford it.

flow4 Sun 09-Mar-14 09:37:09

Drink, do you have any hypermobile joints by any chance?

drinkyourmilk Sun 09-Mar-14 09:41:11

No. I'm the opposite. Very stiff with little flexibility.

flow4 Sun 09-Mar-14 10:54:06

How old are you? Have you ever had any 'bendy' joints?

I ask because you describe the sort of widespread pain I have, and that many people experience as part of hypermobility syndrome. The syndrome is different from simple 'hypermobility', because (a) most people who are just 'bendy' don't have pain or other symptoms, and (b) some people who have the syndrome lose their bendiness over time. It might be worth checking the diagnostic criteria here .

HMS often goes undiagnosed for a long time. In my case, I only got diagnosed last year, in my late 40s, after several years of pain and other problems, and since then I have 'seized up' so I am hardly bendy any more, and am developing arthritis in several joints.

They don't seem to understand the stiffness of HMS very well. It seems to develop because our ligaments aren't supporting our joints properly, so our muscles have to work harder. Then, as we get older arthritis may add to the pain... Or if we get unfit, so that muscle tone is lost, muscles may go into long-term spasm to hold joints in place, which hurts a lot.

I don't know if this helps at all. I just thought it was worth mentioning because my own experience was that my HMS wasn't really considered until I actually became less bendy and more stiff.

Whatever it is, I hope you can get some help. I know how exhausting and difficult long term pain is.

drinkyourmilk Sun 09-Mar-14 11:03:47

I'm 37. I have always been inflexible with weak muscle tone, though will check with my mum. (Memory like a sieve!)
I really appreciate you trying to help. Had a quick look at the link and tbh it makes little sense to me. Will have a better look after in laws have been.

flow4 Sun 09-Mar-14 11:49:46

If you've never been flexible, then that probably rules out HMS. smile However, your weak muscle tone may mean that chronic muscle spasm is a possibility. I had always thought of 'spasm' as a sort of twitching that you feel; I didn't know (until the sports masseuse and physio confirmed it) that it can also be a sort of locking - your muscles can go into spasm to support your joints if your muscle tone isn't able to do the job. That causes widespread chronic pain and exhaustion, which in turn can cause other symptoms you describe - emotional ups and downs, disturbed sleep, etc. It might be worth increasing your exercise levels - I started with very gentle swimming and have worked up to still fairly gentle swimming for a bit longer! - to see if that helps. smile

Of course there could still be an underpinning condition causing your symptoms, but more exercise is recommended for almost everything, and I've certainly found that it helps with pain and moods. smile

drinkyourmilk Sun 09-Mar-14 11:59:18

Thanks. It's definitely something I need to do. I've been in the 'it hurts and I'm far too tired to do anything' rut for a while. I've been reading all morning and it tells me the same. Hate swimming, but love walking and cycling which are 'approved' so will start with those. I'm also a size 18- so hopefully if I loose a bit of weight that will help.

flow4 Sun 09-Mar-14 16:32:43

Oh I know the 'it hurts and I'm far too tired' rut really well! But I started small, reckoning that anything was better than nothing, and am building up... And it definitely does help. Go for it! smile

allisgood1 Sun 09-Mar-14 16:34:52

What's your diet like OP? As it's been suggested there's a link between diet and fibro.

Matildathecat Sun 09-Mar-14 17:08:36

I recently had a lidocaine infusion for my chronic pain. It didn't help me but is apparently fantastic for fibro pain.

RockinD Sun 09-Mar-14 18:29:11

"Very sensitive to noise, I frequently have to leave the room if the TV has been on a while, and get exhausted if I'm doing something that's noisy or busy- it's like I become overloaded."

That suggests an adrenal fatigue issue to me. Lots of stuff on line about this.

MummyJemz Wed 12-Mar-14 11:16:30

My MIL has just been diagnosed with fibro. A lot of her symptoms fit with fibro but she also gets swelling around her joints, its so bad she can't move the affected areas. I didn't think swelling was a fibro symptom? She has had loads of tests and she feels like they've only diagnosed this as they don't know what else it could be...

mercibucket Wed 12-Mar-14 19:41:03

make sure your thyroid function isbelow 2.5 and is not so called 'borderline' as well

indigogirl66 Thu 13-Mar-14 19:19:02

FM is a syndrome rather than a 'disease' as I have seen written in some sites online. The suggestion of it being 'all in the mind' is certainly unhelpful to you right now, but there is evidence to suggest that the pain aspect of FM is very similar in its mechanism to chronic pain, in that there is a dysfunction in the central nervous system (including the brain) which makes pain signals fire off more easily, and sometimes in response to what would be normal mechanical stimulus, like, well, just any everyday activity, or even resting. It DOESN'T mean the pain you experience isn't real, but I think sometimes clinician's explanation of this comes across all wrong. In some localities, FM is treated by rheumatology teams, and in others, you may be referred under the chronic pain or pain management teams - this would certainly be helpful to help you understand what is going on and give you practical methods of dealing with it - both physical and emotional. Exercise is very important and a physio skilled in managing chronic pain will be able to help with that and develop a graded exercise program that is realistic for you. Maybe speak to your GP or Rheumatologist about that possibility. In the meantime, this video is brilliant, (I think!)
Good luck!

RockinD Fri 14-Mar-14 12:38:24

"She has had loads of tests and she feels like they've only diagnosed this as they don't know what else it could be..."

That sounds like a fair assessment.

Join the discussion

Registering is free, easy, and means you can join in the discussion, watch threads, get discounts, win prizes and lots more.

Register now »

Already registered? Log in with: