Fibromyalgia Action UK
39,699 members51,823 posts

need some advice!

was on pain relief for years for pain in back and diagnosed with fibro in 2012...in 2017 my gp (who is no longer in the surgery) told me the meds i was on was causing my pain, iand that fibro was all in the mind! felt like i was being judged, so a few weeks later took remaining meds in and told him i wanted to come off them, that was 18 months ago and my life since then with pain has become a grim existence...i have recently moved doctors because my old gp has left, i am in constant agony back hip legs shoulders and have been left with nothing no help! i am exhausted, the most that was done was a referal to a pain clinic who saw me for 5 mins and the consultant allready had a pain management programme to hand me and shoo me out the door!..the pain and effort i went through to actually get there, i was in full flare up the next day..now i am expected to go and sit somewhere in a public group for 3 hours a once a week for 12 weeks and publicly discuss in a group my pain? i cant commit 1 hout a month to anything with this exhaustion and pain, i feel ill over this and feel like actually running away...im stuck with a gp that doesnt know me and now the social anxiety of a PMP...despite spending the last 18 months practicing mindfullness, massage and reflexology...i have actually stopped going to the gp for help now because anything i have problems with is all put down to fibro. as though i am a hypochondriac so i stay suffering at home?

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Good evening Ellc. My pain clinic options for also a bit like that. I am signed up for a group therapy early May time 3 hours a week for 12 weeks I can’t concentrate for 1 hour let alone 3. When I discussed treatment options at the pain clinic with the chap there is not a lot on offer through them anymore. As I’m already in physio and settled on meds been through private counselling that is all he could offer me along with a pain management course that maybe useful. I am trying various alternative therapies as well now and this maybe a route to go down though it’s costly seeking a little relief. X

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i have spent the last 18 months seeking alternative therapies, massage, reflexology, yoga and a whole host of natural therapies...while being on no meds, i kept waiting to strike gold somewhere, but nothing, if anything i found what causes flare ups and tried to pace myself to avoid any...i have spent all that time suffering from nerve pain restless legs, and even at one point thought my left calve was going to explode, foned my gp he old me "aww thats the fivro" i have pain in my leg that worsens when i sit down or lay down have not slept properly for a long time, all they are willing to do is prescribe anti depressants when i dont feel depressed i have found actually theese makes my mood drop? since being diagnosed 6 yrs ago i have not had one blood test or investigation into my back pain because 13 yrs prior i was told i had a herniated disk, but since fibro diagnosis i feel dismissed!... if any joe public went to the gp and had a herniated disk they would be treated humanely, if a joe public with fibro went there with the same complaint they would be numbed with an anti depressant? i

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Unfortunately you are correct. I have tried a few alternatives and to be honest not much relief. The best think I went through was private paid CBT. The best pain killer I have found for the muscle pains is simple deep heat. My pacing has got better with time. My GP is very good he doesn’t automatically presume everything is due to fibro. I know most do. X

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What is it with so many doctors? You'd think they would try to listen to patients!!! I was started on Sertraline several months ago. My face and heart dropped when the dr suggested this and to begin with it helped. Not so sure now, but, he told me that new research (last year) had shown that anti depressants helped the pain of fibromyalgia. It did make a big difference to my pain initially, not so sure now. He said he wasnt prescribing it for depression but combination therapy for pain. I hope this is helpful.

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Hi Ellc. Can’t you asked to be referred to a rheumatologist? By the sounds of things they might think it would be good to palm you off onto somebody else! My rhematologist is brilliant and I now have a steroid injection in my bum every 3 months. This seems to settle everything down. Not only do they check my joints but also my fibro trigger points.

The problem is that it’s trial & error. I too get a lot of nerve pain, have just found out I can’t take Gabapentin (which I was fine on previously) or Pregabalin. I’m now starting Duloxetine tomorrow which was given for nerve pain but the information leaflet says it’s for incontinence!!

I wish you all the best but just see different doctors until you find one that will give you the help you need or refer you to a specialist. xx

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Unfortunately most rheumatologists access, diagnose and discharge back to GP care never to be seen again

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Yes, it’s hard work having multiple conditions!! I’ve been seeing the same rheumatologist since 2005. He was the only one in the hospital when I last saw him so I’m getting a bit nervous. We moved four years ago but I’d still go the extra miles to see him. I see the rheumatology nurses for my steroid jabs and they also have a helpline.

I’m just sitting here in so much pain at the moment but I realise how lucky I am to have all this support network around me. My biggest fear would be referred back to my GP. xx

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Hi look into an advocate they will go to gp with you and get your voice heard .they will come to your house first and discuss it with you .see if any in your area .and also at same time ask for a rumatology referral

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Good morning ellc welcome to our very friendly group:) I am sorry to hear you are suffering so badly. Sometimes I do feel doctors are in no man's land when it comes to dealing with fibro pain in general. Most of the meds they have to offer don't seem to have a lot of effect to be helpful so won't prescribe them.

I do think the good and understanding

GPS feel as helpless and frustrated as we do. Maybe you could try seeing another GP in your surgery or look at changing to another surgery altogether if that's possible.

I see your post is unlocked. If you want to lock it this link will show you how.

healthunlocked.com/fibromya...

Have you checked out our website at fmauk.org it has a wealth of information you may find helpful. xx

Momo

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Hello

Unfortunately your Gp may well have been correct.

Opiod based pain killers list of side effects include muscle and joint pain and hypertonia which is rigid/tight muscles which cause more pain and that’s just the common ones.

If you were on the pain meds before your fibromyalgia symptoms started they would need to take you off the pain meds to confirm the diagnosis

Fibro is in your head but it isn’t in your mind. The pain signals heading to your brain are getting mixed up and amplified, they aren’t imaginary.

I may be listing things here that you’ve already tried but the stupid app won’t let me scroll back up to check.

Here is how I got my life back. I’m a full time sports therapy student, i work pitch side on sundays and run Scouts 3 nights a week.

Pacing is vital, get in a routine and find your balance, too little activity is as bad as too much. Try 1 in 3 to start, 1 active (house work, shopping, walking), one sedentary but engaged (reading, TV, social media) and one switched off or disengaged, this could be meditation or taking a nap. Only count day time hours in this plan.

Good Sleep Hygiene - black out blinds, white noise machine, screens off an hour before bed, herbal tea, u pillow and comfy sheets

Good morning routine - no mater how I feel if I can move (which I usually can now that my pacing and sleep hygiene are sorted) I do my morning routine, get up, have coffee, take dog out, have shower, put SAD lamp on while I get dried at this point I decide if I need to cancel any plans etc, usually by this point I feel ok even if getting out of bed was initially difficult.

I take one prescription medication - amytriptilyne at night to help with the restless legs so I can sleep.

I take OTC pain meds if I need them but I usually only need them for headaches

I take CBD oil 25mg 3 times a day, Magnesium 375mg daily for nerve pain, 5htp which improves mood/sleep, Tumeric with black pepper which is anti inflammatory, Vitamin D 5000 ui and a good multivitamin.

I’m also vegan, cutting out dairy has made a difference to a lot of people I have spoken to either way eating clean whole foods is a good idea for everyone not just those with illnesses.

Pilates, aqua therapy, foam rolling, massage and acupuncture all help with my self care too.

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