By Lin on Wednesday, May 22, 2002 - 05:05 am:

hey all.. just having a realy bad day and need some help.. I was off pain meds for a short while, because of insurance and omg that was miserable. i was on celebrex, which was helping then my insurance refused to cover it and i switched to Vioxx, which is better than naproxen, or etodolac, or the others i have tried. But everynow and then i get into these period where everything hurts all over, and I am miserable and dont want to get out of bed... anything hurts when i move, and my back is especialy bad, it burns when i lay down, and i am so sore all over. anyone else have these days? sometimes it lasts for about a week ot two, then gets better but comes back after a while.
Lin

By Sheena on Wednesday, May 22, 2002 - 10:28 am:

I get days like that. I just have to go to bed and rest for a few days. You need someone to tell you it's OK, you are not making it up, you are ill.

As to what causes the flare-ups, my latest episode was caused by trying out new orthotics. The pain moved up from my feet, up my legs, into my back, but brought with it tremendous fatigue. Since giving up on the orthotics and going back to my old ones, I am beginning to stabilise again.

Do you have any suspicions what caused your problem? Is it just stopping the meds?

By Lin on Wednesday, May 22, 2002 - 07:49 pm:

I just got back from International science fair... very stressful... and I had a horse show this past sunday (i won all my classes)... so either thing realy. But i get criticized when i just want to lay around.
Lin

By Leon Romberg on Tuesday, May 28, 2002 - 06:45 am:

Pain approaches:

For some EDS sufferers, Vioxx is good for most but not all days.

Pain management is sometimes better handled by a pain specialist than a general practitioner or rheumatologist.

Some people respond to a combination of a multi-pharmaceutical approach that may combine a Cox-2 inhibitor (Vioxx or Bextra or Celebrex) with real pain killers (such as Ultram) and even with anti-anxiety or anti-depressants (such as Buspar or Zoloft).

Some people respond best to a combination of the above medicines with water-based physical therapy (slow, in-pool, exercises to strengthen and tighten tissue around joints).

You might need your doctor to do a telephone consult with an EDS expert.

Some are listed at:

http://www.roomberg.com/edsdocs.html

Good luck,

Leon Roomberg
LRoomberg@aol.com
www.Roomberg.com

By Dianne on Thursday, May 30, 2002 - 06:40 am:

I have just been diagnosed with BJHS. Have had joint pain off and on for a long time but it always went away. Now all of a sudden when I am in my middle forties I have constant pain in my wrists, fingers, elbows, ankles, and feet. Having trouble walking and hurting after I do anything strenuous. This is frustrating because I have always been very active. I was referred to a rheumotologist in December, this was when I was diagnosed with BJHS. He told me to exercise every other day and sent me home. Went back to him again just recently and told him my feet were hurting so bad that I couldn't walk on them and that my joints were still hurting. I was taking Motrin and Advil every three hours. He gave me ARTHROTEC because the other medications was causing stomach pain and nausea (I have been given Celebrex and Vioxx before they also tore up my stomach). This seems to be helping with my pain because I can now put some pressure on my feet. I have to have my blood checked every four weeks for a raise in liver functions. Has any one else used this medication before? I love this board it has helped me to understand what is going on and also I feel support in knowing others are having the same problems.

By Denise Price on Friday, January 02, 2004 - 03:15 pm:

I just turned 50 and have already had a left knee replacement and am having the right one replaced also in March. I also have 3 degenerative discs in my neck that surgery is not recommended for. They sent me to a pain specialist and he helped tremendously. It's not normal for your muscles to burn. This means that something is pressing on one of your nerves in your spine(neck or back). My thumb was going numb and my arm hurt constantly. I took some therapy for the neck and injections in my spine and it is so much better. Still hurts at times but not like before. This pain specialist is the only one in my
area that uses a special technique where he takes an xray machine and can take a long needle and get the medicine up really close to the nerves in question. He learned this technique in Houston. I live in Richmond, Va. so you might look for someone that can do this procedure in your area.
I also have been to a rheumatologist and he said that anti-inflamatories really don't work that well when you are hypermobile. He gave me exercises for my ankles and elbows which are hurting also. I also needed orthotics. He said it starts from the bottom up.
My knees and neck are too far gone for just exercise.
I recommend you get someone to do an MRI on you to find out if you have anything pressing on any nerves. It's not good to let that condition go too long or it will do permanent damage.
It is good to be active and exercise tho and keep your weight down which I am battling right now because it hurts so much to exercise. I love to walk but it hurts to do so.