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Nov 26, 2016 7:37 AM

My first post here. I've been trying to find out what the cause of my pain is for about 7 years now. It began with severe pain in my hips, and has escalated to severe lower back pain. I get flare-ups in all limbs intermittently, muscles cramps, pins and needles, twitching, etc...
I was told last year I had been diagnosed with lumbarisation of my sacrum in 2009. Later told I had osteoarthritis and then I suggested to my GP that I may have fibro and he agreed.
I just feel that there are a fair few things ie tests that they haven't yet tried and generally feel failed by the NHS who still dependant on Doctor will look at me like I'm mad and suggest that my pain isn't as bad as I make out.
I was wondering whether anyone may know of a specialist that could put me on the right track.

Nov 26, 2016 7:56 AM

If it's fibro (does sound like it) there aren't any tests that they can do. A rheumatologist can dx it.

Nov 26, 2016 8:00 AM

I keep asking my GP for a referral to rheumatology but he seems to be putting it off. I just want the best method of treating myself.

Nov 26, 2016 9:06 AM

Hot soaks in tub with Epsom salts, magnesium tablets, try gluten free, look up nightshade plants. Few things I can think of.

Nov 26, 2016 9:10 AM

Does anyone recommend coming off the pain killers?

Nov 28, 2016 10:50 AM

A rheumatologist is who DX me with my fibro...I've been to a lot of good and bad docs over the years... You have to be your own best advocate.. keep pushing till they listen to you...

Nov 28, 2016 11:03 AM

Some Neurologist are also doing diagnosis.

As for coming off pain meds. Its different for everyone. I sometimes come off my pain meds for a "holiday" but only under a doctors supervision. Of a doctor suggests you stop meds but doesn't allow you to taper off them I would advise seeking a new doctor. You should never stop cold turkey.

Not sure how things are in the UK. :( I know here in the US many can change doctors if they aren't satisfied. Maybe some of our UK members can give you some advice.

Nov 30, 2016 2:27 AM

Hi Obscure Nat and welcome to the community. I'm in England as well.
Are there any other GP's in your surgery you could talk to and maybe get them to refer you. I've been to all the GP's in mine and there's only one who I've found will listen to me, some of the others are ok but there's 2 I refuse to see because their response is that I just have to push thro and put up with the pain that isn't as bad as I say it is!!!
You need to keep on to your doctor about being referred, if you leave seeing them for as long as possible they will think you're able to cope and it's not as bad as you say it is.
I don't have fibromialga but I do have trigeminal neuralgia, anxiety and depression, I'm also waiting for mental health to see if they'll dx PTSD. I'm at my GP's nearly once a week atm because I'm in a bad flair and my anxiety is soo bad that's the only reason I've been referred to mental health. Last time I went I was told that I'm luckier than some because I've got my kids, a roof over our heads and I've been referred to mental health.....this from the doctor who listens but I think she's fed up of me being there on a weekly basis but as I said to her I keep coming because I feel worse not better and I don't want to go down the path where I'd think things I don't want to and do things that I don't want too!

I'm sorry I can't be more help and the only things I can suggest with regards to your GP is to keep going back, keep demanding the referrals you need.
Also try some alternative therapies that might help....even if it's only to take the edge off....things like a long soak in a hot bath with 1-2 cups of Epsom bath salts, magnesium supplements.
I wouldn't recommend coming off your pain meds without speaking to your GP first tho.


Nov 30, 2016 6:10 PM

Welcome ObscureNat! It took from 2007 to 2012 to be dx with fibromyalgia. But in 2014, from a fluke rash that developed and my rheumy doc ordered a biopsy of, I was dx with Sjogrens. Their symptoms are very similar except the fibro causes muscular pain and the sjogrens causes joint pain (along with dry eyes, noise, mouth). I was also dx with hypothyroidism around the same time. I had to ask my psych doc for an endocrinologist referral because my PCP wouldn't believe my thyroid was not working, after all his lab work was coming back normal, albeit on the low end. You may need to seek a second or third opinion if you don't feel your doctor is looking out for you. I also have sacroiliac joint issues with spinal OA and other spine problems. It takes time to try different things and find what works best for each of us. I can't do baths either due to mobility problems, but another member suggested speaking washcloths in Epsom salts and laying the cloth along my arms and legs. Another member suggested using magnesium supplements. Many more suggested dietary changes or additions. I'm reducing my sugar and starches intake as well as trying to lose more weight for my joints. I have OA and chondromalacia in my knees so extra weight isn't helpful. Sending you hugs love & prayers as you seek ways to cope while finding your way to correct diagnoses and treatments. 🙂💕🙏🌸

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