Is it common to have

Hi Untitled. Guess I would like to reply and comment to your note. I too have had bad to severe body pain for over 10 years. My medical charts are filled with the same recurring answers to all the different specialists check lists. Fatigue, total body pain, swelling, mood swings, neck head aches, stiffness and the list goes on... I work for a number of Neurologists and I am sick of everyone telling me it is "depression" that is causing the pain. As someone who has been in the medical feild for several years I know the difference in depression as a primary illness diagnosis and depression caused by diagnosis. I have taken Wellbutrin and Zoloft and neither drug helped. They actually made me more depressed and people around me could not tolerate my attitude. I have been trying to take care of my symptoms with Tylenol, Ibuprofen and Motrin. I have not acutally had the work up needed to pin point a true diagnosis. I am in the process of using the resources I work for. I am certain it is one or both of either Fibro or Lupus. In any event I am still requesting a Rheum, Lupus, CA125, diabetes,Fibro, CBC and Met panel lab work up. I also take into account that I have had several female surgeries for cancer so this is the reason for the CA125 lab work. I want to right away exhaust the cancer issue.  I am sorry to hear your disease has progressed to the point of not working. I know one day I will be in the same situation and it too will break my heart to not be here to help others as I truly enjoy what I do. Keep me posted if you hear of any new treatments and how things are going for you. Sincerely, MD 

I just got recently diagnosed with RA, was diagnosed with Fibro a year ago.  I'm not sure I understand why I have both but anyway.  I'm in terrible pain and I don't know what to do.  The dr. just started me on methotrexate and prednisone.  Haven't noticed much of a difference.  I'm still in pain.  I work part time and am thinking I'm going to have to quit.  How I'm going to make it financially, I don't know.  Already on Social Security for my depression.  However, it's not enough to pay the bills and rent.  How do you guys do it?  I have no support from my family, they believe it's all in my head and that the pain isn't that bad.

Cecily

Hi Jane (hope not to add to the Calamity part, sounds like you are there...)

or maybe just CJ?!

Sounds like your doctor is holding you hostage - why don't you attempt to get a second opinion on treatment - sounds like to have good reason to be anxious about trying another biologic.  Enbrel does work for me  - though the pain and disability has been gradually increasing, I realize that some of it is due to the damage that has occurred (started before I was on the Enbrel even) and some due to FM (my first diagnosis.  Got both diagnoses in 2004. 

I wonder if you have ever considered the antiobiotic treatment for RA?  you can read about it in a book (there's actually a couple related books) "The Road Back" about research and treatment by a Dr. Brown at an arthritis hospital in DC earlier in the 1900s.  It seems to be a gradual improvement, and I have talked with a few people whom it is the right treatment for.  Another website is www.cpnhelp.org.  Also, google the Marshall protocol.  They are all similar, with some differences.  You may have to search to find a doctor in your area who will prescribe, many just want to do the standard thing and leave it at that.  It's also helpful in some other rheumatic diseases.   I would (will) consider it if the Enbrel becomes ineffective for me, because I have a touchy liver, adn the standard DMARDS would probably mess it up more.  I've had only mild side effects with Enbrel, with the exception of anxiety doing the injection myself for teh first time (was concentrating on doing the technique, but forgot I was also the patient until it was injected, and then caught by surprise ... I have strangely found that as the disease has backed off somewhat, that I've had to face some of my previously unresolved psychological issues, strangely enough.  But it has worked out.  I even look forward to injections, and only worry because the effect is not lasting as long as it used to. 

     You can also try some diet modification.  Risk factors for RA include cigarette smoking, red meat, and studies have shown that a veg diet (fish can be added) is beneficial - decreases pain.  Other foods that will aggravate some people's arthritis are the family (can't remember technical name) that includes tomatoes (very acidic - I eat only a little raw tomatoe now, not concentrated sauce), potatoes (knee arthritis in particular), green peppers (gives me more hand pain within hours), and eggplant. A little red wine (antioxidants) can be OK if you aren't taking meds that would disallow that.  I have found that green tea is very helpful.  Coffee lifts me up then crashes me down. Black tea sets off my sinuses bad.  A cup of green tea with honey each morning clears my head and helps me focus.  It's full of antioxidants, much more than black tea, which is more processed ('fermented', sometimes with certain molds deliberately, which is probably aggravating my  mold allergy). 

     I sincerely hope you will not be stuck with a doctor who essentially is blackmailing you.  You would think she would be sensitive to the fear you have based on past experience.  I have had to get across to my doctors that my intuition is body-based, and it's usually accurate, though I have had to learn from them too where I'm off-base.  It's a process.  I disagreed seriously with my rheumatologist at first (he tried Remicade first, I was terrified, and did have signs of an allergic reaction, though nothing so severe as you have had.  I went on my own for several months, (it was early in the disease stage, but I did already have wrist damage, so I don't necessarily recommend this), then went back to him and requested Enbrel. 

    From your doctor's end, I will say that Enbrel seems to have the least potential for damage.  It's a 2x/week shot, the half-life is 3 days, so if there are back effects, they should go away a lot faster than the Humira, which my dr. says has the longest half-life of any of the biologics.  He's happy that Enbrel works for me, and we get along now.

     I wish you well, please write back, and stay in touch.  Ask any other questions if you have them.  God bless you!

Ellen

 I have had fibro and for many years and was diagnosed with RA four years ago.

After making the ra diagnosis, my doctor put me on cymbalta. What a life saver. I was on 60mg everyday. 

It definitely helped with my pain, the depression of being in so much pain, and the even the lack of energy.

The only problem was the cymbalta causes a lack of sexual function. With everything else I had given up, I wasn't willing to put that strain on my marriage. So they switched me to wellbutrin. I don't think it is working and I don't know what I am going to do. 

If I could just get some energy I feel like I could deal with the pain.....

Anyway- Cymbalta is almost a miracle drug when it comes to fibro.

Good Luck to all-

Sarah