Hello all,
I know a few of you are aware of the problems I've been experiencing wit my joints, including swelling pain and stiffness in multiple joints, if you aren't familiar with whats been happening, I've had severe pain in my hips, hands, knees, back, shoulders and ankles as well as my neck, and stiffness and swelling in my hands, knees and feet and eventually got a referral to a rheumatologist in September last year. If you would like to catch up, you can find my original post here - http://www.crohnsforum.com/showthread.php?t=56197.
I finally got to see the rheumy today, and honestly I couldnt of asked for a better, more attentive consultant. He was thoroughly unimpressed with the GI I've been seeing, I'll call the rheumy Dr C and the GI DR M for ease. DR M had told me that I didnt have crohns and it 'was not going to come back' and had told me I only had 'a little bit' of a deficiency and given me incorrect medication. DR C was amazed to hear I'd been told i didnt have crohns, and point blank stated that 'of course you do! they don't cut out your bowel for fun' (which is what I was going with anyway) and told me I never should of been given the other medication as it was very high dose calcium and I have too much calcium in my blood (duh :ybatty: ), so he's put me on a Vit D supplement called Fultim-D3 (800IU x4 daily for 3 months, repeat bloods, drop to x2 daily)
So , on to the joint pain, DR C thinks that either I have a form of inflammatory arthritis, or I have Chronic Pain disorder. He also thinks that improving the treatment of my vit D should help to make me feel at least somewhat better.
I have had some bloods including LFT, CRP, ESR, FBC and U+E and he has ordered a test called an Isotope scan, which uses a small amount of a radio-active substance to check for inflammation in the body, I would be curious to know if anyone has any experience with these.
The scan is highly sensitive and will pick up even the smallest trace of inflammation, so if its clear then we will go down the chronic pain route,since I have a lot of 'tender points' associated with chronic pain disorders. This would mean my GP being mainly responsible for treatment which the rheumy wants to include amtriptyline (spelling is probably wrong) if we get to that point. He is one of very few doctors I have met who has not tried to blame me (they always suggest I've been eating gluten) and has acknowledged that the pain is very real and for once, I wasnt critised for taking pain meds! :yfaint:
I would be grateful for any experiences with the scans, management of chronic pain and anything else you would like to throw in. Also.. do any of you use OTC pain relief patches? I've seen a few of them about and I was wondering if they are OK for us crohnies since the packaging isn't too clear?
I know a few of you are aware of the problems I've been experiencing wit my joints, including swelling pain and stiffness in multiple joints, if you aren't familiar with whats been happening, I've had severe pain in my hips, hands, knees, back, shoulders and ankles as well as my neck, and stiffness and swelling in my hands, knees and feet and eventually got a referral to a rheumatologist in September last year. If you would like to catch up, you can find my original post here - http://www.crohnsforum.com/showthread.php?t=56197.
I finally got to see the rheumy today, and honestly I couldnt of asked for a better, more attentive consultant. He was thoroughly unimpressed with the GI I've been seeing, I'll call the rheumy Dr C and the GI DR M for ease. DR M had told me that I didnt have crohns and it 'was not going to come back' and had told me I only had 'a little bit' of a deficiency and given me incorrect medication. DR C was amazed to hear I'd been told i didnt have crohns, and point blank stated that 'of course you do! they don't cut out your bowel for fun' (which is what I was going with anyway) and told me I never should of been given the other medication as it was very high dose calcium and I have too much calcium in my blood (duh :ybatty: ), so he's put me on a Vit D supplement called Fultim-D3 (800IU x4 daily for 3 months, repeat bloods, drop to x2 daily)
So , on to the joint pain, DR C thinks that either I have a form of inflammatory arthritis, or I have Chronic Pain disorder. He also thinks that improving the treatment of my vit D should help to make me feel at least somewhat better.
I have had some bloods including LFT, CRP, ESR, FBC and U+E and he has ordered a test called an Isotope scan, which uses a small amount of a radio-active substance to check for inflammation in the body, I would be curious to know if anyone has any experience with these.
The scan is highly sensitive and will pick up even the smallest trace of inflammation, so if its clear then we will go down the chronic pain route,since I have a lot of 'tender points' associated with chronic pain disorders. This would mean my GP being mainly responsible for treatment which the rheumy wants to include amtriptyline (spelling is probably wrong) if we get to that point. He is one of very few doctors I have met who has not tried to blame me (they always suggest I've been eating gluten) and has acknowledged that the pain is very real and for once, I wasnt critised for taking pain meds! :yfaint:
I would be grateful for any experiences with the scans, management of chronic pain and anything else you would like to throw in. Also.. do any of you use OTC pain relief patches? I've seen a few of them about and I was wondering if they are OK for us crohnies since the packaging isn't too clear?
