Anyone have fibromyalgia after transplant?

[vickij]

I had been on prednisone since transplant 18 months ago. I tapered off before Christmas. 2 weeks latter I started having muscle pain that continues to get worse. At first transplant Dr. said it was withdrawal from prednisone, now he says I have fibromyalgia. Has anyone else had this after transplant & what is best treatment. This is the worst I have felt since transplant.

[bailie]

Vickij,

Why were you put on prednisone? My doctor is very proactive about GVHD and has put me on prednisone (160 mg) because of a dry cough that I had for a couple of weeks. The prednisone cleared the cough in about two days and I am tapering at this time.

[vickij]

I was put on prednisone after transplant 6/25/13 and was on it until Dec. 2014. It was an immune suppressant . Never had pain while I was on it. Transplant Dr. acts like it is my fault, he says I need to avoid stress. My family Dr. put me on Cymbalta 10 days ago & said massage would help. She said it would take 2 weeks for Cymbalta to work. I don't feel any better yet. I think I have GVHD in my belly, but afraid to ask him about it. Afraid he will say it is caused by stress.

[JaneK]

Hi Vicki,
I was doing a web search today trying to figure out if fibromyalgia is common after bone marrow transplant and I came across your post. My transplant was two years ago for myelofibrosis secondary to polycythemia vera. What you describe is pretty much exactly what I experienced when I went off prednisone about a year ago. I felt like I was a hundred years old because everything hurt. Getting up and down and changing positions was not something I looked forward to due to the pain. Because of my persistant complaints of body pain and muscle pain along with my joint pain both my hematologist and my GP have floated the idea of fibromyalgia as a potential diagnosis. I did have some fairly long term relief of this chronic pain after my doctor put me on Wellbutrin last year but now it seems it has returned. Apparently this type of pain is common after bmt but I haven't read anything that has attributed it specifically to fibromyalgia. It seems to me that that is exactly what it is. I am seeing both of my doctors in the next couple of weeks so I intend to get to the bottom of this. 2 years post transplant and I'm thinking this is chronic pain of some sort. Hopefully they will be able to give me some sort of definitive diagnosis and pain management plan. I'll respond again if they think fibromyalgia is the likely culprit.

[vickij]

Thank you for your reply & please let me know what your Drs tell you. I hate to feel this bad all the time & I know what you mean about joint & muscle pain. I don't think the Cymbalta is helping, I have pain pills but they just help for a little while and I don't like to take them unless pain is really bad. I hate it that you have this problem, but am glad to find someone with same symptoms as mine.

[donna j.]

Hello all,
I had my transplant 1/12. I was on prednisone since transplant for gvhd. Average dosage 20mg. Each time I tried to wean off I would get a gvhd flareup. Since then I have acquired osteoporosis and muscle weakness. I now am in pain and have essentially lost mobility. I have difficulty putting a jacket on besides standing and walking. I blame the steroid, gvhd, but lately I question whether arthritis or fibroymalgia has stepped in. Prior to mds (7/11) I had experienced PMR and was treated with Prednisone on 2 occasions in previous 3 yrs.
I suffer from inflammation and swelling of feet,ankles and legs. Currently in pt but not much help. Throughout the day I get sensations like my body is seizing up, including my face.
Any thoughts?
donna