Rosie I need your help....

Hi Vicky, My pain is more connective tissue than joints. It will settle in the covering of the tendons and such. Lupus causes our own immune system to attack healthy tissue. Favorite places are the covering or the lining of most anything in the body. Connective Tissue, Joints, Heart, lungs, kidneys, Brain . . . are all common spots. I might be a bit of a misfit here (at the Lupus forum) because I've been diagnosed (SCLE - Subacute Cutaneous Lupus Erythamatosis) and then undiagnosed . . . but yet the rheumy treats it with plaquenil, pred packs, and I was on up to 10 different prescript ion meds at one point. I'm now only taking plaquenil and tylenol. So it really could be that I don't have lupus at all. But most recently I've been diagnosed with "most probably crohn's" by a Cleveland Clinic GI. This has been quiet all summer . . . yeah!! I'm not positive that I'm correct . . . but I picture it like this. (Hopefully the members who understand things more technically will post and give a more accurate picture). I see the rash on my face and on the backs of my hands. My cheeks and V of neck look like bad windburn when I flare and the backs of my hands look like poison ivy. I picture the covering on my tendons, etc looking similar and the resulting inflammation makes it painful to use those limbs. My physical therapist said there was a lot of scar tissue along many of those areas and we worked hard to break up that scar tissue. It started with the upper body and forearms and the muscles that go from the neck down the side of chest and down below the arms. This caused a lot of trouble with my upper back and neck. Anyway . . . I no sooner got this under control and I started having other issues, including the bottoms of my feet (plantar fasciatis) which was extremely sever and kept me primarily off my feet for a couple of years. But I kept applying ice and standing on a tennis ball, rolling it under my weight . . . and eventually using a golf ball to keep that muscle/tendon stretched. Magically it dissapeared and I haven't had problems with it for almost two years. Anyway . . . it attacks wherever it wants to. It can come and go from one place to another. Most lupans usually have it hit both sides of the body in the same area (like knees). You have a triple whammy because Crohn's, fibro and Lupus can all affect the joints. One thing I've heard others talk about is that prednisone will help lupus and crohn's . . . but it can cause fibro to flare. A lot of the members here also have RA (rheumatoid arthritis). Some have Lupus, Fibro and RA . . . so you are in great company. I always count myself very blessed that my symptoms are mild and not in any organs. There is a member here named Ginny. She has had some huge issues with Fibro . . . I'll bet she could be a big help in helping you sort out Lupus vs. Fibro. Sorry that was all clear as mud. But, actually, lupus hits each of us a little differently. The key word is "inflammation" . . . Whatever will calm inflammation is usually what will help the lupus symptoms. Many of us get a degree of relief when we eliminate sugar and artificial sweeteners from our diet. Both can cause inflammation. I hope some of the others will see your post and add their comments. What meds are you taking? Blessings!

Rosie & Ginny, right now I'm in tears. the pain in my left upper arm is so severe I want to cut it off. Plus I need it to help me get
up because my knees are such a mess. I can't believe things have gotten so bad so quickly...

Today my doc gave me pred (which I planned to start tomorrow) and some Tramadol. I have had 2 tramadol, and all they've done is
caused nausea. So I'll go back to Vicodin and Soma, which is not so effective, but at least my stomach tolerates it

Rosie thanks for your explanation, it was definitely clearer than mud, and I understood what you were saying. Bless you.

Hi Vicky,

 

Rosie has some good advice on pain management.  Here is a good way to know if this is your Chrons or Fibro.  ONce you start taking the prednisone, if your joint pain gets worse, then it's your fibromyalgia that is flaring up.  If your pain gets better, then you're doing the right thing by taking the prednisone, and the pain is from your Chrons. 

 

I always do that test to figure out what is flaring.  My lupus or my Fibro?  Fibromyalgia will not get better if you're on prednisone.  Pred will only make fibro worse. It's a balancing act that isn't always easy to maintain.

 

I tried Tramadol too and it made me very nauseated. So I went to its less potent sister, Tramacet, and it was nasty too.  Pretty much every single pain medication I've tried has made me nauseated or extremely drowsy.  Can't win for losing!!

 

Deep breathing exercises helps me with the pain also.  I know this is hard.  Fibro is a beast and I wish we had more resources and action plans to battle it.  Keep in touch okay,

 

Ginny