Hello, I am new!

I am 33 years old and I have suffered with fatigue, aches and pains for years. Every time I went to my G.P. (multiple and in different areas of the country), they just told me I was run down, depressed, had a post-viral syndrome, etc. Nearly three years ago I started with severe shoulder pain, all over my shoulders and back. I went to the G.P. and they told me to take diclofenac and paracetamol. I went to the G.P. for 6 months at the same practice and saw every partner and locum. They finally decided to send me to a Rheumatologist. In August 2010 I had my appointment where I had a blood test and and x-ray of my pelvis (despite reporting a problem in my shoulders!). When I returned for a follow-up after 12 weeks the registrar I saw diagnosed me with Bursitis in my shoulders and gave me steroid injections which didn't work. I told her that I had been having pain in my shoulders and wrists and she said that 'probably' it was carpal tunnel syndrome and tennis elbow without doing further tests. The registrar referred me for physio. The physiotherapist noticed how weak my legs were and sent me back to see a Doctor. I saw yet another registrar and told him I was now experiencing wide-spread pain all over my body. He did the tender-point test and told me I had FMS. While I was awaiting a follow-up I attended an 8 week self-management course for FMS. I waited 4 months for a follow-up at the hospital. I spent around 10 minutes with yet another registrar. He re-checked my 'tender points' and confirmed the diagnosis of FMS. I told him that I have trouble lifting my legs (I have trouble with stairs, hills, etc) and he said that I should exercise to strengthen them. At that point I was attending a gym 2-3 times a week and swimming and had done so for 10 months prior. The registrar then said I was being discharged and I had to 'get on with it' on my own. I work full time for the Police as a PCSO and I walk 6-8 miles per day so this is a struggle as you can understand. I have not been supported at work thus far, I get no help whatsoever and I have even been given a formal warning regarding my performance. I am so depressed at work as no-body wants to know. I have to keep going so I can pay my bills but it is so difficult! I feel i am banging my head against a brick wall. I asked my G.P. to see another Rheumatologist but he won't see my point of view. I take 22 tablets a day for pain and that can't be good for my long-term health. I joined this site in the hope of picking up tips from the community. Thanks for reading.

9 Replies

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  • Hi there, I think we have all felt as if we are banging our heads against a brick wall from time to time. So many different parts of the body ache and i have experienced new sypmptoms this year, so hey I know where you are coming from. Take the time to get some support from people here as we know only too well how you are feeling. Take care x

  • Hello and welcome to our lovely forum Mikeymoo! I am so sorry you are having such a hard time at the moment. It can be terribly tough at the beginning if our plight isn't heard or recognised. You are not alone in this respect. At the beginning it can be tough convincing your employer that what you feel is real and how much of a struggle your day to day duties can be. Are you able to contact the Police Federation as I believe there may be support there for you, you need to seek advice within the Police regarding your rights concerning sickness and problems carrying out your normal duties. Would it be worth considering lighter duties maybe, something within the force that is a little more sedentary maybe, it's all worth thinking about. You have to be at peak fitness as you are aware for the Police, so I can imagine the pressure you feel you are under right now. You are entitled to a second opinion, so it would be worth asking your GP again, explain how hard you are finding it at work, and that you need to see another Rheumatologist urgently. Are your meds helping you, because 22 tablets are an awful lot to take each day, perhaps you need reassessing regarding your meds, to take less that actually help you?! I do feel for you, it is all a bit of a minefield at this stage. We are all here for each other and I hope you can find some support here. Take care and I wish you all the best. :) :)

  • hi there although this site cant make you get better it will make you feel better we have all gone thru the time when no one believes you and you feel you are going mad. i have found chatting on here a god send.

  • Just wanted to say that I ( and I am sure all of us on this site ) fully sympathise with your plight and while it is of small consolation to you right now as regards to your work difficulties , this sounds an all too familiar scenario. I honestly feel there has to be a seismic shift in the mind set of the medical community, especially in this country , in dealing with people who have this condition because at the moment , telling patients " we can't do anything more for you " ( as happened to me a year or so ago ) is simply not good enough. It just sounds like a feeble excuse to me, or far worse , a complete lack of interest probably because it is not something you can sort out in a few minutes via a prescription pad. It might just be a start if consultants in the same hospital could actually agree amongst themselves that FMS exists. While I think each and every one of us has a responsibility for their own health and to do as much as they can for themselves, there is a limit to this as we are lay people , not medical professionals. Anyway , my little rant over ( feel a bit better now ! ) , I will conclude by wishing you all the very best and hope that in following Lyndsay's advice as regards to talking perhaps to your union , you get the support that you deserve in your work place. Good luck !

  • Hugs to you. I've started carrying an information leaflet around with me for the non informed, even my mum. I know how hard it is at work, you have to try and hide your symptoms as any show of immobility or weakness leaves you open to dismissal. You just need one person who understands and listens to stop the feeling of self madness, thats one thing there's lots of on here...we understand and we listen. XXXX

  • Luckily the police being a big organisation will have well established policies. If I was you, I would refer yourself to Occupational Health with all the info people have recommended. I wasn't aware of the main FA site for ages as when I searched I came straight to the forum but there is a wealth of good info there for approaching your employer. fibroaction.org Don't know how long you've worked for them but there are all sorts of options. Once they accept - which by law, as you have the diagnosis - they are obliged to do, they must make reasonable adjustments. Could you drive a mobile CCTV unit? Or be a coordinator from an office base? For certain, they are not allowed to bully you. I made the biggest mistake of my life when I didn't do what I'm suggesting that you do because I was looking towards ever more senior promotions. Please do this for yourself. You're not alone now. You have the strength of about 5000 of us behind you plus an admin team at FA.org who really know their stuff!

    Whippet x

  • Hello everyone, thanks for your lovely comments. I have been battling with my employers for over two years. I had a meeting with my Inspector last year and he told me that if I was unable to 'fulfill my role' then I should consider finding another job (helpful, huh?). At the same meeting my line manager (Sergeant) said to me that just because I am ill,I am not going to be treated any different to anyone else. I have found myself trying to hide my FMS from everyone at work, telling people In am fine when I am not. I did open up to a couple of my colleagues once as I considered them to me friends. They in turn went behind my back to my line manager expressing concerns about my 'attitude'. As a result, I no longer consider anyone at work as a friend.This information was used against me and used on an action plan I was given before my formal warning. The action plan is supposed to be put in place to help and support me. I have had no support to improve on the points made and that is why I ended up with warning. There have been a number of occasions when I have planned to work with schools and other organisations but I have let people down because I haven't been given the transport required. The Police are funny about letting Police Civilian Staff drive vehicles, especially PCSO's. I've been to Occupational Health after begging and the Doctor is going to refer me to an independent specialist. That was 6 weeks ago and i am still waiting. I had an assessment from Access to Work (reasonable adjustments) and I have given the report to my supervision at work and again i've been waiting 6 weeks. Everything takes such a long time. My P.C. colleagues see me limping around and rarely offer me transportation. In June it will be 2 full years since I had any sickness leave from work which I think is good going. I do have a hope that things will improve at work, especially if I get backing from the independent specialist. I will hopefully have an update soon:-) Gentle hugs to all.x

  • i have had constant pain in my joints for over 10 years,and have seen numerous doctors all say iam depressed and should get on with life,this morning i got into my new walkin shower and i locked in amy joints and had to have help to get out and get dressed.i to have seen a rhymatoligist and he diagnosed fibromyoligia and was put on amiltriptoline,have had numerous bloood work,,i don,t think doctors really understand what it is like ,and i have also found the family donot understand either when there is days you donnot feel like getting out of bed,.i soke to a lady last night and she is going through what we go through and it is good to talk to some one that can identify with you,r problem.i wish you all the best, take care and if you need someone to talk to .you can call me on 01656 857839

  • Hiya Sylvia,

    Thanks for your reply. You are so right that doctors don't understand what its like. I tell mine that the painkillers don't work but he won't recommend anything stronger. I take Tramadol 50mg (x8), Paracetamol 500mg (x8), Naproxen 500mg (x2) and Amitryptyline 10mg (x4) per day. I'm going to see an independent specialist through my works Occupational Health when they pull their finger out!lol. I need to confirm that it is just FMS as my legs are getting worse and I struggle to walk. I have just got some splints to help my wrists as I keep dropping things. My doctor wouldn't give me splints as he said that they would weaken my wrists. I thought I would give them a try anyway and borrowed my Mums. It was funny at work today, because the splints are something my colleagues can see they were all saying "what have you done?" I have had so much more attention and help since I started wearing the splints!lol. I think that you need to have some more tests on your joints as it sound like you may have arthritis too. Thanks for the number, i've added you to my Skype Out contacts. You take care too hun and I hope that you get somewhere with your doctor. I've stopped going to see my doctor now as he doesn't listen anyway.xxxxx

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