Fibromyalgia

[Eve]

Just wondering if there are any other sufferers out there or people who know anything about it?

My rhumatologist has written to me saying I have general inflammatory arthritis, secondary fibromyalgia, hypermobility and a Vitamin D deficiency (osteomalacia?).

I'm on different medications and having physiotherapy and osteopathy but wanting to get together a good plan for feeling as good as I can and wondered if people could suggest things which could help.

My physio is working on sorting muscle weakness and core strength to get me back into things like pilates and want to get back into swimming. Have regular massages too.

Hopefully the vit D related pain will go as the treatment kicks in so that will be one thing out of the way :)

Very grateful for all good suggestions :)

[Bathsheba]

Not a suggestion Jenna, but blimey,....good on ya girl for staying so upbeat + cheerful ;) xxxx

[tufty7]

I hope that you do manage to head this illness off, You are certainly being positive about it and thats the best way to be , My wife has suffered for over 11 years with this now, fibro and CFS, life has been poor to say the least on occasions but life has to go on, getting medical opinion on it varies from specialist to specialist , but with correct pain relief and excersise life can be manageable , best thing to do is learn your trigger points and go up to them. certainly if you do over do it you will pay the price and be aching all over, best of luck to you , Just a word of warning, the internet is full of wonder cures for this illness, and a fool and there money soon goes different ways ......

[Bathsheba]

Hey tufty! How are you? Not seen you since the nostalgia thread ages ago :) xx

[Bathsheba]

**sorry, Jenna, for the hijack ;) **

[luxury]

Hi Jenna,

Sorry to read you're going through all that. I don't have the same thing as you, I do have SPMS though, and I think fibromyalgia is similarish?

The reason I'm writing is because I'm on a drug trial for the m.s and before they started me off on the treatment, I was tested for leaky gut, and various other viruses and bacteria and candida albicans, because they felt if they could eliminate some of those.... then my body has more chance of fighting the m.s.

I tested positive for more than I can write, but the LEAKY GUT??? has to be addressed as I have been treated for Crohns and they seem to think it's all linked.....

Have a read of leaky gut and candida and see if you have a sympathetic 'thinking outside the box' type of specialist prepared to test you for candida albicans and leaky gut.

http://www.leakygut.co.uk/

Best of Luck to You

L.

[thugulike]

I had a 3 year phase of fibromyalgia which was successfully treated with magnesium maleate. The pain eventually went away and was gone for a few years. It has returned but predominantly in my right arm this time. Taking magnesium maleate again and I have virtually no pain. My doctor prescribes it and it is very difficult to find in a pharmacy. You may have to wait for the drug the be specially ordered. My local Boots have never had it in. There don't seem to have been any side effects for me.

[Robinia]

Hi Jenna, I've had fibro for many years (& there are quite a few others on here) although it wasn't diagnosed until about 4 yrs ago No one puts all your symptoms together & looks at them as a whole do they?
You're obviously having a lot of help from the medical profession which is great, take it one step at a time, there are no quick fixes. I don't know about you but the problem I've found is that it's not only pain with this thing, (I'm glad your condition was helped by the magnesium thugulike) it's all the other problems, extreme fatigue, dizzyness, brain fog(!), IBS etc etc that are equally, if not more difficult to deal with. Then there's the unpredictability, never knowing when a good day or hellish day is going to arrive.
Find out as much as you can Jenna,forums are really helpful as you get real experiences rather than some 'expert's take' on how they assume it is. I don't know where you are but maybe look for a local support group, there's one recently started in my area that I'm hoping to join soon. The lessons I've had to learn are to ignore some people's sighs & looks of disbelief, to pace myself & to say 'no' or 'another day'. Take care.

(oh heck, reading this back I've probably been no help at all but it's always helpful to know you're not alone!)

[Eve]

Thank you all so much for your help, it's really appreciated. It's good to know there are other sufferers around as it can seem to invisible and especially as I'm still only 30, people seem to think you're putting it on a bit or lazy or whatever.

The gut stuff is really interesting Luxury. Rhumatology referred me to gastro (very slow going as waiting lists are very long up here) and they thought I may have inflammatory bowel due to symptoms. Had cameras up and down and such and yet to see gastro again in clinic (had apt cancelled in Nov and next available was May!) but fingers crossed doesn't look like any sign of Crohns etc... just a load of polyps.

My ex also got me to see a nutritionalist I was sceptical about but was actually very impressed with. He said tests showed I had a lot of bad bacteria in my bowel so may well be worth a followup.

I'll look into magnesium too thugulike, not sure if I can take it with the arthritis meds but definitely going to check, may be ok as think it was iron I can't take with it which is crap as tend to have low iron levels.

Hey Robinia, it does take a long time doesn't it but feel like I'm getting somewhere now.

I am going to have a look round on the net and see what I can find for forums and groups. Be good to get to know other people who understand esp with the tiredness and muzzy heads and such.

I'm damned if it'll beat me, it's been hard going with my job more and more lately and find weekends are more about catching up on sleep and rest but always try and make sure I get out for some fresh air, even if just to get a coffee.

I get some stick as some people think I'm hiding away and not going out and meeting friends as much as I should and such and had issues over it with my ex but it's me and that's just how it is.

Thank you all so much xxx

[thugulike]

Jenna its magnesium maleate, not just magnesium. Good luck. I was fortunate just to have the arm pain but the tablets get me through every day.

[sunflower71]

my brother has fibro for years.
try this :
http://www.cherryactive.co.uk/
its meant to be really good