It began with knee and hip pain one day when I was walking to work at age 16. I noticed a kind of clicking feeling and then aching pain there after. I ignored it for years as we thought it was due to a new job being on my feet all day and also previous lack of exercise. It remained this way for possibly a year or so and was put down to growing pains and the most prominent pain was in my knees.
Fast forward to age 18 after two years of chronic pain I visit my GP. They do an examination and blood tests (I think) the doctor concludes that he believes I either have lupus, rheumatoid arthritis or fibromyalgia. He conducts a pressure point test with the aid of a website and determined that I had fibromyalgia. Gave me leaflets and some co-codomol and sent me on my way. I visited a physiotherapist at Raigmore Hospital in Inverness she agreed I had fibromyalgia. I also saw a rheumatologist who told me to go to a fibromyalgia clinic in London. (super helpful being from the Highlands of Scotland)
After taking the pain killers they were not helping so I went back to my GP and turned out that the previous Doctor no longer worked there. I was then given amytryptaline at a very high dose and this didn’t work either. I moved away for University and visited my local GP there. They gave me sertraline that didn’t work. I moved home for summer visited a new GP he gave me pregabaline, duluxotine, and gabapentin none of these worked and gave me horrible side effect he then told me there was nothing he could do for me. I move back for University and go to a new GP. They refer me to a physiotherapy nothing helped. I’ve been pushed back and forth from doctor to doctor with no help being given anywhere a long the line. They have done numerous blood tests and have said they are all normal apart from a raised inflammation marker C-reactive protein of 20 and then of 14 two years later. I have been to a rheumatologist who thought it might be hyper mobility issues, I’ve then seen a genetics councillor who wanted to check for EDS no results she said I’m not hyper mobile. I have now been referred back to rheumatology to look at this again. Nobody is helping me I have had no pain relief in almost 6 years! My symptoms have gotten dramatically worse I feel about 85 when I am 21. I am stiff and in agony. Any help or advice would be greatly appreciated. I don't believe my problem is all fibromyalgia related so if anyone has been misdiagnosed and this sounds familiar your stories would be helpful.
Symptoms
Chronic joint pain in the knees, hips, back, shoulders, ankles, wrists, elbows and neck.
Reduced movement overall
Chronic fatigue
Bowel problems
Written by
FedUpRedHead
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Has your GP suggested that you attend a Pain Clinic? The quality of these varies from one area to another but some people have found them to be very helpful on assessing them for effective pain management and medication.
It looks like you're not prescribed any anti-inflammatories or pain medication at present? I don't know if something here might be useful to you while you're waiting for a referral to a Pain Clinic?
I have been to see basically everyone haha! I have been to the pain clinic and they gave me a tens machine and told me I had fibromyalgia. That's about it haven't heard from them since :/ I will look into these links thank you very much!
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?).
Reading your story is like reading my own autobiography just a couple of differences. My pain started in my knees at 14 told growing pains put up with it fast forward to 18 started nurse training on my feet a lot standing around when doing A&E placement got worse was signed off work given steroid injections into knee had arthroscopy on knee helped for a couple of years was actually medically retired before finishing my training which devastated me as it was all I ever wanted to do had physio they said hypermobility but never texted for it but my knees do hyperextended too far backwards which is why I think the pain gets so much worse when I have had to stand around. Developed hip pain as well tried going back to nursing as a HCA but knees just couldn't take it now I am 55 still have knee problems OA in both and in hips was told fibro at about 25 I think told to go home and live with it great advice! Medically retired from my nursing a second time and basically it's just gone in tried al the pills you mention and more have depression because of the pain and lack of sleep etc. I now take MST at night and morning and oromorph for breakthrough pain during the day if needed I try to resist if possible also now have OA in hands. I think so many of us started with what we're called growing pains at a young age that has gone on to be fibro I denied it for many years some days I still don't think fibro as to me it had always been my joints that hurt I never had the pressure points even when I saw rheumatologist last year he did pressure point test and little else never checked my knees or hips did a blood test which showed I was vitamin D deficient. I think to a certain extent you have it a little better as I think it is a little bit more understood now than it was back then but then you see people on to who say it and you cringe because they aren't showing it as In how it affects us properly every time I have seen anyone on these benefit programmes they have had their nails done and are busy doing things and yes they may have bad days but it's never portrayed and I think that is what makes the rest of us look like we are lazy or making it up or whatever andbit makes it very difficult. I wish they would do a programme on a whole group of people with fibrkbto show what it is really like to live with this.
Wishing you all the luck I hope you find something that helps you deal with the pain etc. Take care
It seems like a familiar story to lots of people so it doesn't make sense that they don't seem to take it more seriously. What annoys me is that they haven't ever done any x-rays and say that I am too young to have any conditions that would be causing my bones or joints damage. Don't seem to be getting anywhere I've seen 2 physios, the pain clinic, 4 different medical practices, 2 rheumatologists and a genetic councillor and every time I'm just closed out and told to take pain relief :/ very frustrating.
I am still too young to have knee replacement however when I was with my no ex husband he had BUPA through his work and I was seeing consultant in NHS nothing he could do went to see him privately and had a partial knee replacement within 2 weeks unfortunately it never really worked and since my divorce I am back to NHS who flatly refuse to do knee replacement on either knees even though the one I previously had done is now 11 years old and useless drops me and causes so much pain my other knee has completely had it and causes so much pain and again drops me. Like you it's painkillers and you are too young seems I have to wait until at least over 60 if not longer been told this for so long now it gets very frustrating. I have 4 grown up children and 3 of them also have fibro 2 with knee problems and my daughter with a hip problem. They are already on strong pain relief and looks like they will be going down the same route.
I don't understand why you haven't had any X-rays or MRI etc to rule out things maybe you should go to your GP and demand that you have these this is one thing my daughter did with her hip as it was so bad and had been for quite a while so she asked consultant for MRI he was reluctant but sent her then had to apologise as she has a labral tear in her hip which will mean she will at some stage need a hip replacement and will have OA in it. She is just pregnant with her first child and at the moment we aren't sure how this is going to impact on her hip they are going to monitor her as don't want the tear to get worse and it may mean she has to have a C section but we won't know until the last trimester.
FedUpRedHead Have you made any decisions as to what you might do? Private imaging and/or request a referral to somewhere like The Walton? Or something else?
I am exactly the same had it for over ten years and still nowhere with pain relief just keep giving me cocodemols highest strength and they do t even touch the pain I am a lot older than you so I just learn to live with it. My car is my legs I only go out of the house twice a week it's ruined my life I've tried every thing I can and nothing works and still not given a real answer I'm assuming it's arthritis and I've not slept for years just keep on at then as you're still young
Hi Fedupredhead. You are going through it, & shouldntbe at your young age. Why has no doctor sent you to an allergy clinic. What we consume can effect the body in all sorts of ways. Return to your GP. Ask tobe referred to your local allergy clinic (they are usually attached to the Dermatology Dept. of hospital) . Insist on being referred. Do not give up, good luck.
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