Its been a few years since Ive been on here. I was told I had Fibro way back in 2004. Ive moved to the Midlands from Scotland and am surprised how many folk Ive met down here with a Fibro diagnosis. The GP Im now registered with sent me off to the pain clinic here and that seems to be it. Im labelled and been told I just have to accept Ive got Fibro and take Duloxetine ( which makes no difference in my opinion so I reduced to 30mgs instead of 60mgs per day) All Im hearing down here is the mantra Fibro is a Pain Sensitisation condition & thats what Ive got.
I didnt complete the pain clinic course as I felt a fraud surrounded by depressed folk on crutches. Im not that bad. I felt so sorry for them and thought I must be depriving someone else of a place on the course.
My pain is 3 out of 10 most of the time but occasionally 8 out of 10 on bad days all in relation to chronic lower back pain really. I have stiffness in my hips daily and tight ligaments & hamstrings etc in my legs all the time . Im triggered by physical activity and bending so am reluctant to exercise. Lockdown is making me too sedentary so Im feeling worse.
Ive had all sorts of drugs over the years and years of treatment from a Massage therapist and a Chiropractor. Im not very good at doing physio but Im waiting for a back stretcher to arrive made by Spinefix which I hope helps.
Is there anyone out there who feels they have been labelled & dismissed like me or can understand where Im coming from? NWG
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NWG23
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Absolutely relate. I was diagnosed on a friday afternoon by a rheumatologist who wrote fibro on a piece of paper, handed it to me and said I haven't got the time to explain it to you, we don't treat it here, go research it, I am discharging you back to your GP. I sat in the carpark and cried. I'd never heard of fibro had no idea what it meant. I pulled myself together, told myself I was still the same person I was five minutes before the label was pinned on me so nothing had changed.
Fast forward two years and after lots of research and very little imput from a GP who doesn't think fibro exists, I asked for a referral to the Guy's and St Thomas's fibro clinic and they put together a plan of action for me and sent it to my GP.
Further couple of years on and various injections organised by the Pain Clinic and various CBT courses and I am better able to cope. Diet, no processed food or refined sugars helps me, together with biofreeze gel, heat pads, weighted blanket, epsom salt baths etc.
I do treat myself to hypnotherapy when I can afford it. Not sure if it is the hypnotherapy that works or just the "me time" giving me a sense of wellbeing but I'm not knocking it as I come out of there on cloud 9 😁 Good luck in finding something that works for you.
Thank you for sharing. Even in the US, rheumatologist don't treat fibromyalgia. It isn't considered as "medically severe" as RA or Lupus and symptom severity vary widely. GP is better suited to treat you because they know your health as a whole better. There are definitely more medications to try for your pain but for sure, physical activity is the only proven therapy that helps with pain and fatigue. After all, we are each ultimately responsible for our own healing. I would adjust expectations of our doctors a bit as to not get disappointed. I hope you feel better soon.
when participating in a conference Daniel Clauw made the point that in the US like here PCPs / GPs tend to treat fibro like Osteo. There are so many people with Osteo that they cannot be managed by consultants even though rheumis would have more knowledge than a PCP. However a GP can be adequate in treating fibro and rely on consultants / other services for help. He was very making the point that the best way to manage care due to the numbers was this approach rather than the condition itself.
I have certainly heard some similar thoughts from UK consultants.
I get what you're saying, I too have skeletal issues, but the pain is every joint including lumbar but worst in my most recent neck, slipped discs, nerve pain. I have been labelled with fibro. Because NICE has altered their recommendations my doctors were reluctant to give codeine/ morphine and muscle relaxant drugs, also diclophenac is no longer available to Fibro sufferers. The spine surgeon would not operate on the spurs in my neck because they affect me in a general way and not focused enough. Since this advice I have been given the medicine which is low dose antidepressants x 2 and pregabalin. I insist I'm still in pain but its difficult to push for morphine as the latest health advice is keep stretching, wellbeing, you will have to learn to live with your pain. Of course Naproxen and low strength codyramol is on offer, but these do not agree with my digestion, causing spasms, so I can't take these. I have been waiting for the pain clinic for over a year. Its Covid I think. In the mean time I have to attempt yoga otherwise I would not be moving at all, I have put on nearly 2 stone. They say I'm too young for stronger relief like morphine as they say there will be no where to go with it , im 49. X
I sympathise and empathise with your condition. It was five years before I was eventually diagnosed with FM.
During that time I have received lots of different medication for the pains that plague me, day and night, every day, some days worse than others. The fatigue I suffer is terrible, there are days that I just wish to sleep. I have no energy, no concentration, I have given up driving with the exception of making the odd, and I mean odd trip to my GP.
I suffer anxiety and was on Venlaflaxine. My GP decided to try me on Duloxetine 30mg. The worse thing was the withdrawal symptoms from the venlaflaxine as you couldn't take both medicines together.
When I started taking Duloxetine, I was still getting very anxious, especially in the mornings. I also felt very, very nauseous and tired. But, my GP did warn me thing would get worse before they got better. After about three weeks things began to settle down, I was less anxious, I was sleeping a little better and the nausea became less. The pain was not better with the Duloxetine. I have the Butec 35 micrgram patches, which keeps the pain stable. I now take 60mg of Duloxetine, which I believe is more help for my anxiety and depression rather than an effective treatment for FM.
I have tried many alternatives and I take Multi-Vitamin and mineral tablets, Vtiamin B complex, Vitamin D, Magnesium Malate and Citrate (these definitely do help with the night cramps) and Omega 3 fish oil capsules.
After reading other testimonies and doing further research, I have concluded that there is nothing that will help my FM and that I will just have to live with the pain and the fatigue and the vastly reduced quality of life. This is as good as it's going to get unless someone convinces me otherwise.
I am sorry if I come across as negative but this is the real situation.
I wish you well on your journey to relieve the symptoms of this terrible condition.
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