Fibromyalgia

[Toothlessismyspiritanimal]

Hi all,

I've been extremely tired for as long as I can remember, literally exhausted. Everything aches, but particularly my hips and back and no amount of sleep or rest makes a difference. I have other symptoms as well, but generally I feel like a wreck.

In the last six months this has become much worse, and my doctor believes I have fibromyalgia. She is running further bloods but if all of those are also clear then she is going to treat as fibro. She gave me a checklist type thing to fill out and bring back with me as a guide for diagnosis and frankly it's my life on paper, so I think I need to accept this might be the case.

Does anyone have any advice about how this condition can be managed or any questions I should be asking of my GP? She is lovely and supportive and has always been fantastic over the years, helping me through anxiety and depression.

I just feel like a huge hypochondriac, but all I want is to feel normal. I'm in my thirties (late) but I feel like I'm 60.

Thanks in advance.

Hi there, I too thought I had fibromyalgia for several years until I was seen by a Rheumatologist who diagnosed me on the spot with joint hyper mobility syndrome. Do any of your joints over extend? It’s also linked with fatigue..one theory being that your body’s muscles are over compensating for lax joints creating the fatigue.

In either case (fibromyalgia or jhms) there is no cure but people find relief by taking prescription meds like certain low dose antidepressants that can help with the pain.

There are some great forums with loads of advice such as healthrising. Good luck at your doctors appointment & try not to worry xx

Thanks for the reply Utterly

No none of my joints overextend, though I do have an exaggerated curve to my spine at my lower back. Ill mention it to my doctor though.

Did you get some help from the rheumatologist? I hope you're feeling better now.

Hi, I was diagnosed with fibromyalgia a year ago, following glandular fever.
I find yoga, walking and swimming help. I cannot drink much alcohol and got to bed ridiculously early most nights, I watch my iPad/read but I am laid down and my body resting. If I stay on the sofa I get restless legs which is another symptom.
Sorry to hear you are going through this too, I feel like I am living in a vat of treacle a lot of the time.

Ask for a pain management programme referral before going down the medication route

It's beneficial at any time, but if you can do it before you take tablets then you may find that you don't need them or only need a very low dose, whereas once you are on them it's a lot harder to reduce/change/stop them

Pain management course isn't necessarily going to rid you of your pain, but you would be surprised by what you can learn (even tips from other people taking it at the same time as you) and if you follow what they say around pacing etc then there should be at least a small improvement - e.g
I thought I was pacing but what I was doing was kind of the opposite even though it made sense to me at the time

Thanks Shetland and Tellme

Treacle is exactly what it feels like

TellMe good point - I don't want to be reliant on meds if I don't have to (though at the moment I'd take anything to get some relief from the relentless fatigue and aching).

I don’t take regular pain meds but keep pain killers in every bag and my car incase I need them. I find the “brain fuzz” the worst part- I have two young sons and work with SEN students and sometimes feel like I need to sit in silence and stare at a wall to allow my brain to have a rest.

@toothlessismyspiritanimal Thank you! Yes I’ve been feeling much better but I wholeheartedly agree with the others who have said to try other options before meds..a lot of those meds can make fatigue much worse as well. One thing that really seems to help is lifting weights..even just the 3-5 lb hand held ones. It seems counterintuitive but it really works for me!

I’m not sure if you’re taking magnesium but I’ve learned most people are very low on it & it can help with energy, aches, bone density & muscle soreness to name a few things. Well worth taking IMO. Lots of for you, you are definitely not alone!

Rob

Nothing has changed really except I changed my job in September and I suppose I have been more stressed but apart from that nothing.

Sleep quality isn't great but I have young DC. But even when I do have a decent sleep, I wake up feeling like I've been crammed into a box. Mattress isn't the problem, it's about a year old and got on fine with it before.

Apart from seeing my GP, trying to eat a good and balanced diet, rest and sleep well and exercise when I can, I've not really done much. The GP has conducted several sets of tests but is just doing one more round. Everything is clear - thyroid is a bit on the low side but within tolerance.

I've started taking magnesium and vitamin D on GP advice.

B12 injections may be helpful, ask doctor to test your levels. It's common in people with fibro and chronic fatigue, and it's just an injection every 3 months and no side effects so worth doing if needed

I was diagnosed with fibromyalgia 20 years ago and nothing worked. More recently I have found out that I have hyper mobility in just my hips, which cause the increased curve in my lower spine and I was diagnosed with severe sleep apnea. I'm now starting to get stronger and better. But it took 20 years to get this bad, it's not going away over night.

this is a very helpful uk based fibromyalgia website, you should find masses of information on here. Unrefreshing sleep is a typical symptom ( although of other conditions too). Your symptoms do sound like fibromyalgia. Hyper mobility may also be part of it ( again, one kind of EDS has similar symptoms). Don't over exercise and ignore people who tell you to 'push through'

Thanks everyone. GP is testing vitamin B12, will mention hyper mobility. This is really helpful, just so much info out there that it's hard to see the wood for the trees to an extent.

Has anyone any suggestions for the bone numbing tiredness? I have to admit that I've had power naps in the toilet at work on occasion because I'm too tired to get through the day.

Get tested to see if you have a sleep disorder.

Pacing properly makes a huge difference to how mentally and physically exhausted and drained you are. I was sceptical and I thought I was doing it anyway but I was wrong, thats one of the best tips I took away from the pain management programme, I can really see the difference between when I do and when life just gets in the way