Finally a referral to the Rheumatologist. What information do I take to the hospital?

Hello my fellow sufferers,

I hope today is a good one for you. Finally after years of searching for answer and asking to seeing a Rheumatologist, I have been referred.

I have had regular visits to the Pain Clinic for the past 6 years, it was about 2 years ago that the Occupational therapist suggest that I have FMS. She can not diagnose but gave be a leaflet to read all about it. I showed this to my GP, hoping that this would be followed up. NO. I see my GP ever month and have done for the past 7 years. All I have had in the past is "you have to stop looking for answer and just get on with your life. There are no answers." Then I found this site, I downloaded the information on FMS and showed him a few weeks ago. Stating that it was from the NHS web site. This seem to change thing. Straight away he sent me for blood test to elimination all the nasties and to check my under-active thyroid was under control. I had my results yesterday, they were all normal as I expected. Now he has sent a request for me to see a Rheumatologist. Perhaps because I worded it in a way that it came across as his idea.

I am so grateful for all the comments people are making on this site, I feel better in myself, knowing I am not alone, all these symptoms are not in my head. they are real.

Can anyone suggest what I take to the hospital to help the Doctor know all my symptoms?

Look forward to your comments.

13 Replies

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  • Morning You sound a well organized person. I would take list of pills and doses, list when you have had flare ups and because sometimes my mind gets muddled I also write down how I feel from head to toe. Apart from that just be your self and hopefully you will get some help. Good luck xgins

  • I agree with gins.A list of your medication,a list ( if your like me and can't remember ) of what doctor's you have already seen.And a list of questions you want to ask..Good Luck !

  • i would aree with gins reply as that was whati took

    good luck

    xx

  • Hi Im sorry to hear that you have had to wait so long but onwards and upwards. i would definitely keep a pain diary & take a list of all your symptoms. Good luck. x

  • I had o Rheumatologist who turned round to me and stated' GPs look after Fibro' but at long last have a great Rheumatologist Prof who understands it fully.

    Back to your question, take a full detailed diary if you can

  • Excellent news & about time too. What area are you in? Just wondering which hospital you will be referred to?

    I would recommend the taking the things already mentioned.

    Good luck

    Jane xx

  • Hello there, Im very glad to hear you finally got to motivate your Dr. You dont really need to take anything to the Rheumatologist as they will check your pain points and see your response. They will ask a few questions however, so if you suffer with memory issues you might like to write a small list of symptoms. I took a pain diary I had done for 2 weeks, but I was in tears from the walk to the clinic and nearly passing out with fatigue so I dont think the pain diary was really necessary! I think it depends on how bad you feel on the day. I hope you have a good rheumatologist as I did....one of the things he explained to me was that the mind and the body work together...and in the case of this illness it is so true. I hope I might have helped you even to give you some light...you have been suffering for so long. I truly hope you can get some relief and some action soon. Best wishes. X

  • Thanks everyone I will do as you all suggest. Let hope I dont have to wait long, the hospital I will be attending is The James Paget in Gorleston, Gt |Yarmouth, Norfolk.

    Thanks again.

  • Really good new for you and hope all goes well with your appointment. I went not so long ago to see Rheumatologist and I had to take a urine sample with me to be checked. When you receive your letter from hospital they will probably ask you to take one. It is awful you have had to wait for so long. Took about 8 years before I was finally referred after seeing so many different doctors..

    All the best.

    Theresa x x

  • It is so awful that we have to wait so long. I hope that you are now getting sorted.

  • Hiya, I just went to see the rheumatologist two week ago. Take a list of any medication you take, or take them with you. I also wrote down very clearly when I've had surgery (of which several have been related to arthritis) or been to the hospital etc, I put the year of things in red first, then followed with the details. I found the Dr did look through this while we were talking, perhaps because it was quite easy to read. He was a very nice Dr, however in the follow up letter he did get a couple of things wrong, but time to sort those out, at least he did say there is no doubt I have fibromyalgia.

    I sincerely hope you see a Dr as nice as I did, I was really freaking out about going, but I needn't have done. Good luck.

  • Thank you so much. I am worried too.

  • Well done for standing up to your G.P.! I was lucky really I only had to wait 6 months to be referred. I would say make sure the Rheumatologist does the correct tests so that you get a proper diagnosis. I was fobbed off the first time with bursitis of the shoulders, tennis elbow and carpal tunnel syndrome. I was referred to a physiotherapist and they noticed my legs, arms and shoulders were very weak. I saw a Rheumatologist again in March 2011 and I was diagnosed with FMS from palpating 'tender points'. I was discharged from the hospital 5 months later, a registrar stating "you have fibromyalgia now go get on with it." Since then my symptoms and weakness have increased to the point where I can hardly walk. I saw a doctor a number of times with my concerns and he fobbed me off stating it was all down to FMS. I got fed up so I requested to see a different doctor. He examined me thoroughly and stated FMS does not cause the level of weakness I am experiencing. I am now under a Neurologist and waiting for an MRI scan, a test I should've had in the first place to rule out other conditions. I hope that your local Rheumatology Department are more understanding of FMS than mine, make sure you are not fobbed off as I was. Make you take with you a list of all your current symptoms and any other questions as you might forget to tell the specialist. Take care, hugs.xxxx

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