Any Ideas?

harrysmum2
harrysmum2 Member Posts: 8
edited 2. Aug 2010, 11:40 in Chat to our Helpline Team archive
I was diagnosed with fibromyalgia about 18 years ago. It started after a bout of tonsillitis at age 37.
After all sorts of "treatments" etc I gave up and got on top of it myself thanks to the Arthritis Foundation here. They ran a 6 week self help course. I have been very good for a few years now with just the odd flare up usually caused by doing too much.
I also have Hashimotos and Fructose Malabsorption. These are both under good control.
About 3 months ago I started waking up with very stiff fingers in both hands.........then very stiff feet as well. It is completely different to the FM symptoms as it is both feet and both hands. It eases after a about an hour. As long as I kept moving them they were fine.
GP tried a week of prenisone tabs. That took all the stiffness away. However it came back as soon as I stopped the tablets. It is now so bad my entire body feels stiff with hands, elbows, shoulders, feet and particularly knees. I cannot bend my knees without pain and cannot sit still for long without pain. My blood tesests are all fine except mt ferritin is high (350) I don't have heamachromatosis. I have Barretts Oesophagus so take Somac and Thyroxine for the thyroid every day. The GP has said he thinks i have Seronegative RA and has started me on Minomycin 50 one a day. I've only been on them 2 days so haven't noticed any improvement. Do you have any ideas where to try if this doesn't help. Panadol does nothing and neither do any other pain tabs. I tried Tramadol but it didn't work...just made me feel ill.
I have seen a rheumatologist who "looked strangely at me" and said he was at a loss.

Thank you so much.

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I'm sorry I have no ideas at all. I've not experienced anything like this. I hope someone can sort something out - you might even have to resort to that terrifying place, the internet. That might have some answers. I wish you well. Dreamdaisy
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • speedalong
    speedalong Member Posts: 3,315
    edited 30. Nov -1, 00:00
    Hi and welcome,

    It is good that your GP is interested and willing to try and find a drugs combination that will help you. I don't know anything about your type of arthritis as I have OA.

    When did you see they rheumy who didn't know how to help you?

    Have you looked at the publications and resources section of this website?

    Sorry I can't be of more help.

    Speedy
    I have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.
  • louise38
    louise38 Member Posts: 18
    edited 30. Nov -1, 00:00
    Hi,

    I have found that the rheumy nurse listens more than the rheumatologist but you need to find a good one who you can talk to. All my bloods came back clear too so dont give up. Ask your GP to refer you to another rheumatologist they may be more understanding. Its worth a try, at least your GP is with you.

    Good luck
    Lxx
  • helpline_team
    helpline_team Posts: 3,802
    edited 30. Nov -1, 00:00
    harrysmum2 wrote:
    I was diagnosed with fibromyalgia about 18 years ago. It started after a bout of tonsillitis at age 37.
    After all sorts of "treatments" etc I gave up and got on top of it myself thanks to the Arthritis Foundation here. They ran a 6 week self help course. I have been very good for a few years now with just the odd flare up usually caused by doing too much.
    I also have Hashimotos and Fructose Malabsorption. These are both under good control.
    About 3 months ago I started waking up with very stiff fingers in both hands.........then very stiff feet as well. It is completely different to the FM symptoms as it is both feet and both hands. It eases after a about an hour. As long as I kept moving them they were fine.
    GP tried a week of prenisone tabs. That took all the stiffness away. However it came back as soon as I stopped the tablets. It is now so bad my entire body feels stiff with hands, elbows, shoulders, feet and particularly knees. I cannot bend my knees without pain and cannot sit still for long without pain. My blood tesests are all fine except mt ferritin is high (350) I don't have heamachromatosis. I have Barretts Oesophagus so take Somac and Thyroxine for the thyroid every day. The GP has said he thinks i have Seronegative RA and has started me on Minomycin 50 one a day. I've only been on them 2 days so haven't noticed any improvement. Do you have any ideas where to try if this doesn't help. Panadol does nothing and neither do any other pain tabs. I tried Tramadol but it didn't work...just made me feel ill.
    I have seen a rheumatologist who "looked strangely at me" and said he was at a loss.

    Thank you so much.


    Dear Harrysmum

    I can see that this is a confusing situation for you. With regard to information about the condition you have been diagnosed with if you follow the link http://www.arthritiscare.org.uk/PublicationsandResources/Arthritisbasics/Typesofarthritis and look at the factsheet for Seronegative arthritis this will give you information on Seronegative RA and how it is treated. If you look through this you can then speak to your GP about your diagnosis and the appropriate treatment for this condition. You could ask for a referral to another rheumatologist if you feel that the one you have seen has been unhelpful. You are also welcome to call us here on the helpline to speak to our helpline team for more support. I hope this information is helpful.

    Very best wishes
    Dawn

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