I have Fibromyalgia - Ask me anything

[clairethewitch70]

I was diagnosed around 2006. Willing to answer questions.

@Mum2OneTeen - Welcome

Thank you so much :)

Yes I agree with you over the leg pain possibly being the sciatica but weirdly all throughout me having sciatica my back was never really bad, just the buttock area and down the leg. It seems since I've had fibro that my back is very bad ( plus I'm overweight which doesn't help ).

When I'm due on my period, right now as it seems, my pain goes through the roof. Does anyone else experience that?

I've found meditation very helpful and hypnosis. I have a very positive attitude towards life which definitely helps. There is someone on my FB that I went to school with who has fibro and she depresses the life out of me, miserable doesn't describe her. Every single day it's moan moan moan.

Funny you mention the dummies book as that's the only one i have and it's rubbish
Will have a look on Amazon at the ones you've recommended, many thanks

@Zoflorabore - all my conditions get worse a week before my period, right through the first day or so. I also get really bad pain around both knees, in kind of a weird place that lets me know my period is imminent. Thankfully I am going through the menopause. Positive attitude is one of the best treatments for Fibro I am sure. Your friend is a type 2 on my highly scientific chart. And you are a type 1.

Claire no I think the pain and fatigue I have is purely from the EDS. I remember even as a little kid feeling exhausted. My DM used to try to persuade me not to go to bed so early (not many 6 year olds beg to go to bed at 6 pm I shouldn’t think ) and I had pain in my thighs, ankles, wrists and neck as a child too and lots of tendinitis. As this was in the ‘60s I was just labelled a sickly child and no one investigated further.

@clairethewitch70- I work in health care- I've never yet come across anyone who hasn't had a depression diagnosis and antidepressants during teenage/ young adult years with a later diagnosis of fibro. It's always been in the back of my mind there is some link, but not academic orientated enough to have looked into it, except anecdotally.

The best (and only) advise my consultant gave me was to have 3x20min baths on bad days

My fm & CFS are largely ignored by most hcp and I got a lot of hassle post op recently because it took me longer to get up and about

Vit D & B12 have really helped me with the extra bits you need to take

SD- that's interesting!

I never had depression at all or any MH issues until I was in my mid thirties, around 36 but I can see how there are many links.

A pp mentioned us being more likely to have a child with SEN. Ds is 15 and has Aspergers and I highly suspect my dd (7) has ADHD. I'm convinced i have it too and masked it well.

@Mousewithascarf - told you had growing pains I expect. So you have had EDS as a child. Has it got better or worse since adulthood?

@SD1978 - some of my symptoms early were put down to depression, the insomnia, aches & pains etc. It would make an interesting study.

@KatyMac - Wet heat is a good treatment for Fibro, I was recommended this early on in my journey. Re: post op, definately takes longer to recover, even minor surgery.

@Zoflorabore - did your MH issues develop around the same time as the fibro?

Claire no I wasn’t told I had growing pains but DD (back in the 80s) was. Her first symptom was severe heel pain at around age 11. She had far fewer problems as a child/teen then I did but is worse than I am in adulthood. She also has ulcerative colitis which also causes her to have arthritis poor thing. I have no idea if this is linked to the EDS.

My fatigue is better than it was but suspect that’s because I’m not bringing up kids, no longer working, coping with a vile husband and since they passed away, not responsible for very ill parents. The joint problems are no worse but more joints are now affected.

I have FM and have done for 30 odd years. I have learnt to manage by resting and making the most of the good days. The two best things that worked ( and I've tried it all!) are cutting out wheat entirely ( not just reducing it) and acupuncture ( though first few sessions knocked me for six its been amazing since).

Ive just had my pain course referral in today - the questionnaire is just a sheet of “bad thinking” statements that you’ve to say if you agree or not. It’s annoying because already it’s a one size fits all approach - it talks about “your injury”....I don’t have a sodding injury!

I have fibro too. Never been on antidepressants though although I did have depression as a teen and PND after having DD. I think it was possibly childbirth which "kicked off" the fibro for me.

I manage just by pacing myself, I have a really supportive DH which I think makes such a difference and I work from home in a really flexible job, I know I couldn't go out the house to work, not even p/t. I've been working on upping exercise (without overdoing it) as well as losing weight. It hasn't stopped the pain but it means moving around is easier to do even if it's just in the house.

I agree with the two types of those with fibro too. I've left a lot of support groups because they were all the second type and I actually felt like I was too happy to fit in. IMO life's too short to spend each day as a pity party, some days it does get to me but that's when I'll take some time out for myself and go get my hair or nails done, get a massage or even just take myself out for lunch or go see a movie.

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Hi claire- yes it would seem so but the MH issues came first and the fibromyalgia soon followed. There has got to be something in that surely?

I'm up now and this is my normal. I'm in pain. I've just taken my first set of painkillers and am in for a long day.
I'm a bit gutted I couldn't have slept longer as I got a new bed and mattress yesterday after being severely uncomfortable with the old one, springs sticking out everywhere etc it was horrendous to sleep on. New one is bloody amazing and still I couldn't manage more than 3 hours.

One thing that has become very obvious to me is when I've overdone things. If I go into Liverpool shopping for the day then I'm literally wiped out the following day. I have learnt to pace which is tough with the OCD! Mine manifests itself with cleaning and order and I'm ashamed at how bad my house is compared to say 5 years ago when I would scrub top to bottom every day.
I simply can't do it anymore.

This thread has been so helpful, thank you.

Just want to jump on to say there has been a link found between inflammation in the body and depression. It's a chicken and egg scenario, but it may well be that he inflammation was there before the depression.

Will try and find a link to the book about it now....

If you only had fibro what medical tests would prove it/provide a diagnosis?

Walnut you only get a diagnosis of primary fibro if everything else has been ruled out. A good rheumatologist will be very thorough in their investigations. There is no diagnostic test.

Yes it's a diagnosis by process of elimination which I think doesn't help when telling friends/family etc who don't really "believe" in the condition.

I wouldn't wish it on my worst enemy.

@Mousewithascarf - for your daughter

@Bouchie - interesting what you say about wheat. DS1 had allergy testing during childhood and was diagnosed with a wheat allergy, but eat wheat with no issues? DM claims to be allergic to wheat too. I am almost vegan so may be a step too far for me atm. Acupuncture - yes - tried on my shoulder and had good results. Sorry you have had it for 30 years - is that 30 years of symptoms, or 30 years since diagnosis?

@Ucangourownwoo - just cross out anything not suitable or alter it Pain clinic barely glance at mine, if they do, it is always the mood questions they pick up on. Good luck, my pain clinic is marvellous, and do facet joint injections and radiofrequency denervations on my spine.

@clairethewitch70

Oh good, that’s what I’ve done - I just worried they’d think I was being arsey!

My pain clinic isn’t particularly helpful, I’ve been going for 8 years and they’ve told me I’ve to stop using verstatis patches because there’s not enough clinical evidence that they do anything more than take the edge off the pain. The sentence before that was that my pain makes me feel suicidal...taking the edge off is massive🚐!

Hi Claire, 30 years of symptoms. I was only diagnosed about 2 years ago but it clicked everything into place. I can pinpoint when it started to occur following a hugely emotional time in my childhood. Cutting out wheat is really easy once ypu gwt used to it and given ypur family stuff very likely to be effective. For me it was life-changing and meant I could go back to work. Try if for 6 weeks but don't have a crumb as if I have a tiny bit it effects me for about 4 days.

I suspect that I have fibromyalgia. I get aches all over but mainly centred around my shoulders, neck, base of skull, face. I get stiffness particularly in the morning and brain fog regularly. I also am hyper sensitive to light and noise and have migraines. I also experience lots of fatigue.
I do have a b12 deficiency and some of the symptoms are similar. These symptoms aren't constant, they flare up when stressed which tends to be mainly work related.
I am just wondering what the benefits of a diagnosis are?

what do u think of carly barton using cannabis to help with her pain?