|The original version of this page can be found at : http://www.healingwell.com/community/default.aspx?f=10&m=258848|
|Posted By : coffeefiend - 5/26/2005 8:50 PM|
I'm 36, female, have Eosinophilic Gastroenteritis (kinda like crohn's) I am HLA-B27 + and have undifferentiated spondyloarthropathy. However, I have increasing peripheral joint pain - feet, ankles (with swollen lumps both sides of each ankle) shoulders, wrists, and worst of all, elbow. I also have joint pain and deformity in the first knuckle of my right hand, that sucker is twice the size of the joint in my left hand, tired of telling people I clocked someone in the bar. I am used to regular pain (yep, had a colonoscopy with no meds) but this is getting unbearable, mornings are hell. I struggle to lift my coffee mug ( and I need that stuff, trust me!!!) I can take 8 - 10 Advil or Tylenol and it doesn't totally kill the pain. I'm badly vitamin D deficient and I tested neg for RA - the usual test, anti CCP and CRP. I have a lot of soft tissue swelling as well and even the rheumy is not sure what's going on. Anyone else had this happen? I feel about 90. This really kicked in about a year ago and the spondylitis since '02.
Any advice would help. I have to wait 3 weeks to see if the Vitamin D works, then we look at sulfa drugs and maybe steroids (oh goody!) which get me pain free at 20 mgs and no less.
Work (I'm a financial services admin) is getting harder every day.
Thanks all and God bless! the fiend
|Posted By : erin.K - 5/26/2005 9:06 PM|
those lumps near your joints could be a thing called a pannus. it comes from arthrtis. are they hard? moveable? the joint deformity i think gives a better diagnosos than the blood tests which could be positive when a person has no symptoms and they can be negative...and the person displays all of the symptoms.
are you taking magnesium and phosphorous with the D? those are needed to absorb the D. have you tried any narcotics for pain relief? i used to do the same...a bottle of advil within 2 days! not good for the stomach! now i have a mild pain killer darvocet along with valium for back spasms from AS, lidoderm patches, enbrel and ASA.
perhaps your rheumy can refer you for a second opinion....a fresh mind with new ideas and a different way of looking at this deformity! worth a shot. sorry for your pain....in the same boat with you. disappointed about work too....can't do much anymore (nursing). been RA and complications since 15 (ten years ago).
take care, i wish you some good answers soon!
|Posted By : oreo - 5/30/2005 10:28 AM|
|Hi fiend, welcome to the forum. I agree with you, no talking till I've had my coffee. I remember my fingers so swollen that it hurt to pick up my mug. I still did it though. Nothing gets between me and my coffee.|
Sounds like arthritis to me. Do not need blood tests to convince me. My RA factor was negative. But with all the other symptoms the dx was pretty easy. Hope that the Dr. come up with something that can help you to function better. If you are not satisfied with the response you are getting, get a second, third and forth opinion if you need it. Keep fighting for relief and a dx. Keep on posting. We are great listeners and advocates here. We've all "been there, done that, don't want the post card".
Again, welcome to the arthrits forum.
Worry not for tomorrow, for tomorrow will take care of itself.
Remember healing comes one step at a time, sometimes it seems that its one forward and 2 back but ultimately, always in a forward direction!!!
|Posted By : straydog - 5/30/2005 11:43 PM|
You give a close description of what I go thru, all my major joints have arthur really bad. I must have my coffee in the am, but the hands are so swollen & numb, especially the fingers, have PN going on there and on Cymbalta 60mg for that, I think its helping. I have had MRI's from top to bottom and they all show the problems. I am seeing a pain mgt dr and he is really trying to help me, trying to see if insurance will pay for pain pump. I sure hope you get some relief soon. Susie
|Posted By : Ides - 5/31/2005 10:56 PM|
I have spondyloarthropathy, am HLA B27 positive, and have Crohn's Disease. My spondyloarthropathy also features enthesopathy with it. Basically the tendons become extremely inflamed where they insert into the bones at the joints/ This is part of the spondy disease. I cannot take prednisone, am allergic to sulfasalazine, and cannot take NSAIDS because of the CD. I went from a completely mobile person to unable to walk unless using a cane; unable to hold a full glass of anything; etc, etc. I have regained my mobility since beginning Remicade infusions.
My rheumatologist diagnosed the enthesopathy using ultrasound imaging. He feels it is more sensitive than MRI. Enthesopathy [aslo called enteritis] is a real and immobilizing component of spondyloarthropathy. Hope you find relief soon.
PS Forgot to tell you that many rheummies will poo-poo finger involvement in spondyloarthritis. I have one finger that has had the DIP joint fuse on its own. All the others have nodules on the DIP and PIP joints. My rheummy has finally admitted that my fingers also suffer from the effects of the autoimmune response.
CD for 25+ years; finally Dx 2004.
Post Edited (Ides) : 5/31/2005 10:59:38 PM (GMT-6)
|Posted By : CaMama - 5/31/2005 11:46 PM|
Sorry to hear about your pain. I have psoriatic and rheumatoid arthritis and my RA factor rarely ever shows a problem since I "grew out of" my JRA (junior rheumatoid arthritis) as a teen. However, with PA, I have problems with tissue, organs, and what the doctor's were calling a form of colitis caused by the PA. So, don't let those doctors dismiss your pain!
You might want to ask about psoriatic arthritis as it often affects the feet (my feet started causing me constant grief about 10 years ago and it's been an uphill battle ever since.) I would suggest that if you are having so much pain AND your feet are also causing you grief that you see a podietrist to ensure your foot mechanics are staying in check. That kind of pain is going to make you walk funny either way and specially made orthodics will hopefully help you from ruining your foot posture (which will only cause you MORE grief.)
|Posted By : straydog - 6/2/2005 10:00 PM|
|Ides, is any of your arthritis related to your cd. My gi is thinking of sending me to a rheumy because of this mess. Susie|
I have oa, but he also wonders about the cd arthritis.
|Posted By : Keah - 6/10/2005 11:53 AM|
|Hey Fiend! I too have Spondy and it stinks. Because I have such lousy veins, I was reluctant to jump straight to Remicade. Essentially I would need a port put in for that I'm I am not willing to consider that until or unless I run out of other options. I chose to give Enbrel a try first. It's milder than Humira and Remicade and is self injected, so you can do it yourself. At the time that I made this decision, I was having very few gut troubles and it helped a great deal. I have also been working with a Pain Doc to try and bring my back & hip pain under control.|
Unfortunately, even with the worms, my CD seems to be getting out of control. I'm now looking to jump up to Humira, at least until I can get my gut undewr control again.
I hope that you can find some relief. This joint pain is sure miserable. Be well.
SUSIE - Yes, the Spondylitis that Ides and I both have is definitely related to CD. Among the problems that it can cause is Synovitis. That's chronic inflammation of the soft tissues surrounding the joint and it could be a part of the problem the you're having in healing. I hope you can get past this soon. You've had enough!
Keah a.k.a. Wormy
God helps those who help themselves.
Please help us support this invaluable forum.
Follow my progress with TSO (whipworms)http://journals.aol.com/keah/KeahsTSOJournal/
|Posted By : Floriran - 5/16/2016 10:26 AM|
I am new here but familiar with RA for 17 years. Ive been in highest dose of methotraxiate , sulfasalazine , prednisol and Naproxen and still had extreme pain and stiffness and joint damage on daily basis and very difficult to control my RA.
On 2007 and after 9 years taking different pills and having lots of cortisone injections and not any success then i thought of trying alternative ways too and that was a time i first heard about homeopathy .
One of My client / friend asked me to see a homeopath. I never heard and didn't know anything about homeopathy and i had few weeks research and told to myself.'' I am going to try it because i wont lose anything because it seems scientifically there is nothing in homeopathy remedies ''.
Now it is 9 years that my RA its on remission and there is no RA factors in my blood anymore. I know it is like a magic and i was very lucky to find a very well known classic homeopaths in london and he easily recognised my constitutional remedy and miracle happened.
Please where ever you are go and see a classic Homeopath and may that is a health pathway for you too.
|Posted By : Floriran - 5/16/2016 10:52 AM|
Also before remission I found eating row celeries very useful to ease the pain . Also reducing the red meat was useful too.
I used to drink lots of suger free dinks which when i started my homeopathy treatments i cut them too and started to drink 2 litre water per day .
Go to this link to see The side effects