Hello,
I have been diagnosed as having Psoriatic Arthritis, but I am really not sure. First I was diagnosed as having RA, sero negative. I then was started on Remicade, which didn't help a lot. I developed a serious rash on the bottom of my hands and feet, quite pustulur which was diagnosed as psoriasis. This went away, and some time later I got some large, very raw, red bloody spots on my legs, that were so painful I could barely stand. These, too went away, and for several years I have not had any more "psoriasis". The psoriasis was considered atypical. In the meantime, I was taken off of Remicade and started Enbrel injections.
I also have ulcerative colitis, and am taking Asacaol (Mesalmine) and Imuran (Azothioprine). This has been in remission for over two years, my last flare (2 years ago) was so serious I spent several weeks in the hospital, and was very near to having my colon removed.
Even on Remicade, I have a lot of joint and muscle pain. It is symetrical, and almost all of my joints hurt. I can deal with the pain, although it isn't fun, but I work full time and have a real hard time dealing with the fatigue. I've had some anemia and leukopenia from the Imuran, but it hasn't been severe for some time.
My question is, how do you deal with the fatigue? I force myself to get up in the mornings and go to work. I am so exhausted that when I come home from work, I just want to go to bed. I don't feel like doing anything on the weekends, and I can't seem to get enough rest. My doctor has prescribed medicine for depression, and I don't feel as depressed, but I'm still exhausted. My quality of life sucks, I'm only 52, and feel like 102.
Any advice? Sorry this is so long, I really don't have anyone to talk to that understands.
Gail,
What you are feeling and what you have been through is completely like PA(psoriatic arthritis). I have it too, and have had some colitis, but I try to eat properly, but you know with colitis all you have to do is flare.
The fatigue is huge for me as well, and we have a thread running on the RA sight about fatigue right now. I am 41, and have taught only two years, and feel I may no longer be able to teach, because of the flares, and the fatigue. Yes, I teach one or two days a week and have to rest a lot inbetween. The joints start and then the tendons start. That is where I am at today. I taught special education and had to walk around a High School yesterday, and I started flaring during the night.
PA feels like having RA with Fibromyalgia, and it is because not only the joints flare, but the tissues and tendons flare around it. Unfortunately I have been at treatment for nine months and have not had a whole lot of relief that is consistant.
I do take an antidepressant that does help with the pain at least the receptors of the pain. I take Effexor ER, and it is not only and SSRI, but it is a dopamine reuptake inhibitor, so the pain messages are interrupted. Some days I can tell more of a difference than others. I do feel better in my spirit, and that counts for something.
Feel free to join the rest of the crew on the RA sight.
shelly
Gail, welcome. Somewhere in the archives I posted some research about fatigue that our disease seems to have the annoying trait of continuing its party while we are sleep. How rude. It jerks us out of our deep REM healing sleep, maybe not even waking us up. So we wake up thinking we had a good night's sleep, but in reality we did not, and it starts to build up into "fatigue". So, we are fatigued because our disease won't allow us to sleep properly. Talk to your doctors, valerian root can be bought OTC, and watch your blood tests for anemia. Again, welcome aboard. CathyHi Gail, I have PA also and the faigue can be so bad that just getting dressed in the morning can be an effort. I have just started on enbrel and the fatigue left the day of my first injection. It was like I just woke up after 5 years. I dont know how long it will last though so i am enjoying it as much as i can. All the best. Ally PS sorry didnt answer your question. seeing as you are already on enbrel I dont have any suggestions other than to pace yourself and not overdo things.Thanks! Its good to know that others have been through it too. Sometimes you feel like you are all alone in the world. Hi Gail and welcome. I certainly understand feeling alone and am so glad to have found this caring, supportive, and friendly group.