Fibromyalgia

[Nogodsnomasters]

I have a suspicion that I have fibromyalgia, I've read on the NHS website that the treatments are therapy (had it, several times), exercise (don't need a GP for that) and painkillers (I use over the counter painkillers and I'm not really willing to take anything stronger as I have health anxiety and they frighten me). So based on the above, is there a point in even attempting to get a doctor's appointment to discuss my suspicion and symptoms? I have previously been the GP over some of my symptoms in the past individually and nothing has ever come of it more than routine blood tests which have come back normal but I've not gone about all of them together and there are definitely new symptoms since I last went (years ago). Two of my sister's are already diagnosed with it and I believe I've read it runs in families? They're both on strong prescription painkillers and still suffer regardless.

perhaps they can just run a few tests to make sure it is fibro and not (for example) rheumatoid arthritis that can be treated?
in terms of pain management you could discuss options..duloxetine sometimes helps or other antibbeuropathic. These aren’t opioids.
maybe they can signpost you to support?

Yes I suppose that is true, though I don't think I have the symptoms of RA, joint paint not a huge issue for me in comparison to muscle pain and I have no swelling anywhere so I'm not sure they'd even query that.

At least if you get a solid diagnosis confirmed you could apply for PIP and the.money could help you pursue the odd appointment with a chiropractor or swim sessions? Apparently that helps. No painkillers have ever helped me btw.

Can you get PIP for fibro? I have this diagnosis and am struggling, with PIp I could reduce my hours in work.

Never even thought about pips, that's actually a good shout! Honestly working less would really help me cope better with my symptoms and manage them more as you say more free time for gentle exercise like yoga, swimming, walking.

how old are you, OP?

I think you will need to see a rheumatologist to be diagnosed but it might be useful in the future to have it formally on your records. As well as benefits you might find you can be referred to Occupation Therapy, hydrotherapy, physio etc and they might make a difference.

Here a GP will diagnose.
CBT, mindfulness, exercise, pacing yourself etc all help.
I have heard some people get PIP. I don’t understand why. It causes great pain but I can do stuff. I would bloody love enough money to have a cleaner though. I’m finding that readily hard at the mo.

Good luck to others claiming.

I have a prescription list as long as my arm and several other limiting health conditions along with Fibro & I was rejected. Apparently being able to put a plate in the dishwasher means I can do ‘light housework’, meaning I wasn’t in enough pain, and so don’t need help.

It's different for everyone though. I was diagnosed last summer. I've had days when I can't walk. I know of others who have been bed ridden for weeks.

I don't take strong painkillers, but I've been prescribed low dose Amitryptaline which helps with the constant low level pain in my hands and feet and helps me sleep, which was a real problem before. I was also referred to an occupational therapist who was able to give me handy tips for coping with things that have become difficult. I also applied for a blue badge, they needed evidence and the letter from the specialist was useful for that.

Fibromyalgia is a bit of a cop out diagnosis IMO. Usually when they have ruled other things out. I wouldn't go to a doctor with a google diagnosis anyway. Go with your symptoms and history and ask to be referred to a rheumatologist.

I have RA and one rheumatologist labelled me with Fibromyalgia. I asked for a second opinion and the second rheumatologist could find no evidence. Interestingly since he changed my RA drugs I have been symptom free.

It took me literally years to be diagnosed with fibromyalgia
They have to rule everything else out as there is no test for fibro, you'll probs get referred to a rheumatologist. I went thru I had cfs, ME, etc and over the years I have had it that I regularly get "new" fibro symptoms and it's like "oh I get this now too? Great" I'm on strong painkillers but what is best is trying to manage the fatigue and pain and doing self care and resting or sleeping if and when you can
Good luck

I'm almost 35

To be honest years ago when my first sister was diagnosed with it I thought the same thing - not even a real disease and they're just saying it because they can't work out what's actually wrong with you! But now it is a proven condition of it's own and to be honest I have 95% of the symptoms given on NHS website now, years ago it started with just some symptoms but it's built over time to include most of them. I understand that fibromyalgia and RA have very similar symptoms but I have very little joint problems, occasionally an achey knee/hip, no swelling, no redness etc as said above mine is muscular pain and nerve pain, plus other stuff. I feel like I'm 55 rather than 35.

So for example, I've obviously been to the GP regarding my IBS years ago and was diagnosed with that. I went about my headaches and was given a blood test and an eye test and eye scan, all clear no further follow up. I went about my tiredness, had a blood test for the usual, vitamins, thyroid, hormone levels all normal so no further follow up. Have never went about my wide spread pain. I also have chronic reflux that I'm treated for. The only thing I don't get is the so called fibro fog - no slurred speech, can process new information quite well but I'm assuming that's because I'm still quite young, I do get dizzyness frequently but I'm not clumsy.

Have you considered chronic anxiety? It's not until you get out of the vicious circle that you realise how bad it affected you.

I suffered with everything you described in your post with anxiety. The muscle pain was due to my constant tensing of every muscles in my body. I was totally oblivious to it at the time. It was the cause of my headaches too. I was incapable of relaxing so it had become my normality and therefore didn't pick up on it at the time.

My mum takes duloxetine for Fibro and finds it effective at lessening the symptoms. Not curing them totally, but helping tone them down a bit.

Yes, you need to get yourself into the system and get thoroughly checked. Fibromyalgia is a diagnosis of exclusion and should not be taken lightly.

It turned out some years ago that my overwhelming fatigue and all over muscle pain were actually caused by an underactive thyroid. Once that was properly treated, all symptoms disappeared. Similarly, a friend who was told she had fibromyalgia turned out to have a pituitary tumour. She was treated for that and all her symptoms disappeared.

I have heard some people get PIP. I don’t understand why. It causes great pain but I can do stuff.

You don't understand that everyone who has fibromyalgia isn't the same? Really?

Come on. Of course you understand. I don't believe for a minute you haven't done basic reading about your condition, which would lead to the understanding of variability.

If you can do stuff; great. But don't be suggesting everyone is like you.

I can do what I do as I spend every day working to stay active. Despite the enormous pain. I have had days where I can’t take a step without a stick. But if I go to bed and don’t move it’ll just get worse.
All the evidence suggests gentle exercise is actually one of the best treatments.

It doesn't matter what you can do because it's not remotely relevant to another person with your condition. The 'well I can do it' attitude stinks.

No the advice is to keep moving. That’s not coming from me.

I'm not sure why you think anything I have said is not to move? My comments were about being able to claim PIP. Which you are allowed to do; even if you can move

I would just tell the doc your symptoms and they can eg test things like thyroid, low vitamin d or iron

Yes they probably will test all those first. I take thyroxine, my thyroid levels are optimum now, but it made no difference to my tiredness or aching. Likewise my folate levels were low, I've been taking folic acid for over a year and my levels are great now, but it made no difference to how I felt.

It makes a diagnosis lengthy, but it's worth it because it could be something as simple as that I guess.