I have been diagnosed with Fibromyalgia for 5 years since I was 18. I have been having new symptoms that seem to be different to my previous fibromyalgia symptoms. I have received advice from lots of people and have been told that it sounds like arthritis or Ankylosing Spondylitis. I asked my GP about this and voiced my concerns. He refused to do an x-ray to investigate as I shouldn’t be exposed to radiation for no reason and then said “maybe all of this is in your head”
I’m worried we are missing something more serious. My pain is worse when not active and worst in the morning. My pain is mainly in my lower back and spreads to my bum but not down my leg. I have general pain everywhere and extreme fatigue. Any advice would be greatly appreciated don’t know where to turn.
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FedUpRedHead
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I asked the following in response to some previous posts of yours on a similar topic and I'm wondering if you requested a referral to somewhere like The Walton?
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Just to add to the above, The Walton Centre has an excellent reputation for its Pain Management Program and it is known for the program for Young Adults with Chronic Pain Conditions: thewaltoncentre.nhs.uk/112/...
You may well be in the unfortunate position of someone who is waiting for an auto-immune condition to manifest itself more clearly in your blood work or to show up more obviously in any imaging tests. In the interim, it might well be worth your while to attend a specialist clinic like The Walton (this is an NHS service and might be worth discussing with your GP?).
I don’t want to jump to any conclusions but I had a doctor for a number of years that told me I was having woman problems. Year right I told him I think I have ms or Lyme disease he said don’t jump to conclusions well my conclusions weren’t right I have ms. I don’t have that doctor anymore. Maybe you should have a second opinion. And when you go just give them some information and let them tell you what you have. I also did that with an eye doctor at first I went to a eye doctor and asked why I had only some vision they had no clue then two years later I went to another eye doctor and I didn’t tell him I had ms. Guess what that doctor said to me you have MS don’t you and I said yes I do I should have come to you years ago. He said you have all the signs of it. What I am saying if you go to another doctor maybe you will find out what is going on with your body.
I am not a doctor but I know what you are going through.
I had to keep bothering my doctor appointment after appointment just to get someone to listen and actually help me try and understand why I’m in so much pain and what to do just for a fora little bit of ease. Please don’t give up. If it wasn’t for my family I might’ve given up. Ask if they can refer u to pain management clinic or a physiotherapist at the hospital. I’m thankful to a physio who listened to me and got the specialist to give me an MRI scan. The results showed it wasnt all in my head I’m not nuts lol but I’m sure many people feel the same at limes
Pain in lower back spreading down to bum can sometimes be low or deficient vitamin D levels. (Not saying yours is, but might be worth getting your vitamin D levels checked as 85% of us here in UK are low or deficient in vitamin D.
Hi there. I have had fibromyalgia diagnosed since 2008. I was also told it was in my head so many times. I cried a lot but persisted with my "nagging" the doctors as they said. The pain is worse first thing in the morning, after a nap and if I am inactive for about 15 minutes.
The trick is to do slight stretches while still lying down in bed or just to move your limbs to wake the muscles into activity slowly. Next sit up on the bed and do gentle exercises of neck, arms legs and gently bending forwards and back not too much. When able to you can get out of bed and exercise just to strengthen spine muscles and what I call core body muscles. Fatigue is likely due due to too much muscle pain or lack of proper sleep due to fibro. Also look up the fibro Facebook page for support. It is not easy to be misunderstood and not believed even by loved ones, if you suffer from this debilitating condition.
As for the pain in lower back and down the legs I would suggest you insist on a spine xray as it sounds like lumbasacral issues and sciatica which I have as well. Be persistent but politely insist on either being referred, xrayed or scanned. If not seek a second opinion or go to PALS.
Find less strenuous activities to occupy your mind such as reading or something light can counter fibro fog and keep memory sharp. Pace your activities as the muscles need TLC. Break tasks into chunks for example i chop and prep veges, rest. Do next cooking task later after resting and sit down regularly during my cooking exercise. What matters is the end result. Do not worry too much just do what you can when you can and remember to be yourself. Your days will differ so take it in your stride. You will find someone who will believe you in the end. Good luck in your fight. Please if there are spelling errors sorry I'm visually impaired. Take good care of yourself.
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Undiagnosed and feel like no one is listening 
Fibromyalgia No Cure (cut and paste into wordprocessor )
when you feel nobody is listening
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