Can anyone please help..I'm at the end of my tether

Hi all I'm new to this but need some advice please..I have suffered terrible chronic widespread pain for approx 22 years (I'm 41) so over half my life I have tried physio accupuncture injections and I think every painkiller ever invented..Been referred to pain clinic and pain management yet all I feel is more pain it just keeps getting worse and worse mainly in my neck, shoulders front of my chest hard to explain but deep inside between breasts and shoulders also back pain aswell as arms elbows wrists and hips and ankles..Pretty much all over aswell as instantly feelin exhausted with a lack of consentration restless leg syndrome lack of sleep depression etc etc theist seems endless, I have begged and pleaded to be refered to someone that can help or even diagnose (My doctor and myself think it's fibro) so anyway my doc had finally referred me to rheumetology and mentioned possible fibro in her referral letter, I had my appointment letter 7th June and for once I felt that their was a light at the end of the tunnel do imagine how upset I was when I recieved a letter from my doctor sayin that the rheumetologist had said that for fibro it's the pain clinic that deal with that and not rheumetology..Pain clinic really don't take me serious and I asked my doc if their was anything else we could try as I'm really at rock bottom hence the rheumetology appointment..I feel like the light that came on for a week has been switched off I can't stop crying what I want to know is who would I need to see to be checked for fibro? I have most of the symptoms and am convinced it's that but I'm so angry my appointment has been cancelled and yet again I'm just being left to suffer this awful painful condition.. Im so sorry about the long essay but wanted to fill everyone in as much as possible..Please help if you have any info for me I would be extremely greatful..Thank you Kaz xx

17 Replies

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  • Hi Kaz. Welcome to the group.

    Please ask your doc to refer again to Rheumatologist stating that you need a definite diagnosis if your doctor is not able to do so him/herself. After that it is trial and error with your doctor,for what medication suits you and the pain clinic should be good for support. If you look under the tags (to the right of this) for medication, you will see a number of different combinations. We are all so different. Maybe your doctor could check out this site. If they are interested it would be invaluable for you.

    As you have had this for so long, just maybe you are pushing your body too much so check out pacing under the tags too. If you are that will account for so much pain constantly. I assume that you have no muscle relaxant and suggest you try one. I take Baclofen six tabs (2,1,2,1) daily and am waiting on a referral to assess the pump for continuous. I also take Tramadol 2 tramadol 50mg at 2 tabs 4 times daily, maybe this or similar combination may suit. Other than that hydrotherapy can be good and gentle exercises.

    Hope this helps. Do check out the tags and ask more as you need. There will be lots more answering you later today. Fi x

  • this is my story to a tee, ive been suffering for over 30yrs Im now 54,Ive had all sorts of pain relief muscle relaxants, acc, physio, nothing worked, finally diagnosed with fibro last week, please get to see a rhueemy, if one wont see you try another, but get your diagnoses

  • My doc diagnosed me so i have never seen a rhumy . xx

  • Hello Kaz, So sorry to hear you've suffered so long sweetie, and more sorry too, that you're not getting anywhere being officially diagnosed.

    I too suffered over many, many years and finally one GP realise what it could be and referred me to a Rheumatologist who diagnosed me with 18/18 - the full tender points that let you know you DO have Fibro. It is Rheumatology that diagnose Fibro - NOT pain clinics. It was the Rheumatologist who after diagnosing me, sent me to the pain management clinic - so keep pushing for a Rheumatologist - one that does deal in Fibro - they are out there.

    Gentle hugs,

    Carol x

  • Hi kaz,

    Welcome you are definatly in the right place for support and advice. :)

    My heart goes out to you as i was in that same situation as you 3 years ago. I felt like there was no help for me.

    My gp took it upon herself to diagnose me and that was that. She would see me everymonth but she gave me no advice and just looked at me with sympathy. I didnt need sympathy i needed advice on what to do with myself.

    Eventually everything got too much for me and i went in crying (i dont do that usually). I finally got reffered to an immunologist. I said i wanted other things ruled out.

    He was the best doctor i have ever had. He listened to me and gave me so much advice and finally the answers i needed.

    I know he deals with cfs/me, which he had dx me with aswell as fibro plus a list of other things.

    It was such a releif i didnt feel like i was a hyperchondriact.

    I am now having physio and i have support groups i could go to , but its just too far away for me to get there.

    One of the main things is you have to pace yourself. I t is an absolute must you need to have plenty of rest after evrything you do.

    The other thing is you need to get the right meds and take them all the time as if you forget then they dont seem to work as good and its like the pain has got too bad. (if you get what i mean) lol.

  • hi i hope you get the support you need lots of good advice and support on here ..keep fighting on your diagnosis and remember your among friends .. some with really great ideas and advice xx gentle dyslexic hugs

  • Hi Kaz welcome to the site, where you will recieve lots of advice and support.

    Could you not ask to be refered to another Hospital in your area or within a 10 mile radius??? One that has a reumatology Dept of course, what area do you live in?

    Hugs, Sue

    x x x x x

  • Hi Kaz, welcome. I was refered to a reumatoligist, after my Skin specialist sent me to them. She thought i had R.A. Thats when tests showed i hadn't. He done a 18 point check. Said it was fibro. Told me to take Gabapentin, then showed me the door. I hope you do get to see a reumatoligist. It is your right, so keep on at your Gp. Good luck hun. hugs & love to you XXX

  • Hi Kaz, so much good advice already - I had to change consultants at my local hospital because the first one (Rheumatologist) I saw refused to acknowledge that Fibromyalgia even existed! I contacted his secretary and requested to change to another Rheumatologist that I was recommended by a fellow Fibro patient who had been diagnosed and was responding well to treatment. When I saw my new consultant, I felt so much better psychologically. All my meds were changed, I got my diagnosis and have never looked back. I now see my GP for repeat prescriptions but can see my consultant if I am worried about anything. I would suggest you do something similar if you get the opportunity to do so, it worked for me. If we hit a brick wall with Fibro, we have to try and find another way round it . . . best of luck, we are here for you Kaz :) :)

  • Hi kazzy

    As Lynn said above, a lot of what you are describing could be due to myofascial pain. though you could also have Fibro as it's common to have the 2 together.

    A GP can diagnose Fibro and rheumatologists only typically diagnose Fibro because traditionally it was assumed to be a form of rheumatism. Most rheumatologists do not know how to properly treat Fibro because it is so different to what they are used to. The 2010 diagnostic criteria for Fibro was designed to be easier for primary care practitioners (ie. GPs in the UK) to use. Your GP will need to make sure everything else has been ruled out first, but they could make the diagnosis.

    There is information here on diagnosis:

    fibroaction.org/Pages/How-I...

    Please note that it is out-of-date (we're working on updating it) as the 2010 criteria is not mentioned in the article, but there is information on this through links on the right hand side of the screen.

    A physiotherapist can diagnose myofascial pain if they have had training in this area. Unfortunately the really specialist myofascial therapists are pretty much all in the private sector as the training is so expensive. But your GP could ask the local physio department if someone there could assess you for myofascial pain and trigger points.

  • I am appalled to hear that the rheumatologist refused to see you.

    He is the one to examine you and check that you don't have something else like lupus.

    In the end, my rheumatologist diagnosed fibro on a background of inflammatory osteoarthritis.

    He even sent me for an isotopic bone scan!

    I don't understand why he won't see you because there are so many things to be ruled out before you are diagnosed with fibro.

    Many people on this forum have other conditions alongside fibro - you need to be checked for that too.

    I even get to see a rheumatology occupational therapist.

    This has to be a postcode lottery. Is there any other rheumatologist you could be referred to? Or is it now the GP's job to run all the blood tests, x-rays and scans?

    Maybe what I'm saying is out of date as I was diagnosed in 2006.

    After diagnosis I too attended Pain Clinic and Pain Management Clinic. I learned a lot.

    Wishing you all the best xx

  • Hi Kaz,

    You've had lots of great advice so won't repeat anything. It is so hard when the professionals won't listen...luckily I was diagnosed by my GP so have never had to be seen by anyone else, and he's a star and clearly interested in Fibro but it took me 15 yrs to find him!

    I hope you get some answers soon x

    Best wishes

    Ang

  • hi kaz im really sorry to here about your ordeal i had a simalar problem before i moved areas i had to see a private consultant in norwich so i could get a diagnosis mybe you could google it to find out if any specialists in your area that deal with rumatology and book an appt to see them i no its not and ideal situation but you might just get a diagnosis and then have something to pin it on and you can start dealing with it and not tiptoe around things

    hope you get things sorted hun

    love and gentle hugs

    lyn

  • WOW thank you all so much for your kind words and advice I shall certainly be taking it all on board..I have contacted PALS today and they will be getting back to me in the next few days (I know she's working on it as she has already called me back about my NHS number) I will keep you all informed I do know if they can't help I will continue to fight I will go to the GMC if needed as enough really is enough.Thanks all once again I really do appreciate it xxx

  • Reading your post was like reading my own story! For years I was told it was depression, general pain, age related wear and tear (I'm 48).

    A good fifteen years ago or so, my sister-in-law was diagnosed with Fibro and she thought my symptoms were so similar to hers that was possibly my condition too. When I first mentioned it my doctor he agreed it might be something like that but as so little was known about it then there was no real diagnosis for it.

    This went on for years until I moved to new area and a new doctor, three years ago. He took it seriously, treated my pain with painkillers and referred me to a rheumatoligist. He did tests for arthritis etc. (which I have mild beginnings of) but when I told him my doctor's and my own suspicions about fibro, he actually laughed at me. He said it wasn't his field, even though he was the head consultant. I was devastated. Like you, I had light in the tunnel, the it was cruelly switched off.

    I did some research online and found a link to the Fibro clinic at Guy's Hospital in London. I went back to my GP and asked for a referral.

    When I got the appointment and saw the consultant, he affirmed my diagnosis and said he couldn't believe no one had diagnosed it before as it such an obvious case!!

    So, please do persevere. Push for a consultation and wherever you live, see if there is a major hospital with a dedicated Fibro unit, like Guy's and ask for a referral. Some hospitals allow self- referrals too.

    I know how devastating it is trying get anyone to understand what you're going through, But all of us on here do, and we will always listen.

    Keep your chin up, and PUSH,PUSH,PUSH for that referral !!!

    Good luck xxxxxxxxxx

  • HI there i just wanted to mention about the Pain Management , It help save me and taught me not to feel guilty about my inability to do everything i want or what friends family expect of me ,they sorted out the right medication and what dosage was right for me , they will listen to you and there will be other people with all conditions there who feel alone also . At first you sit there and think How do they know how I feel and how can they understand , They do and bit by bit you learn to pace yourself and give you confidence to say no i'm able to do things . It may not be for everyone but please give it a go as i'v made some good friends through it and we still meet up or phone each other when were down or need a cry without being judged . good luck and i hope you get all the help including the rheumatoid clinic help you need . :))

  • I could have written this, I know exactly how you feel and that's me with a diagnosis, I just feel that if the doctor does not know what to dour, then that's it, theiron not interested in trying to find out.