Welcome, Guest
Username: Password: Remember me
  • Page:
  • 1

TOPIC: My Misdiagnosis...kind of a long read...

My Misdiagnosis...kind of a long read... 4 years 2 months ago #57824

  • Jana
  • Jana's Avatar Topic Author
  • Offline
  • Platinum Boarder
  • Platinum Boarder
  • Posts: 791
  • Thank you received: 42
Hey people! It's been a while since I've posted here because I thought I had the world by the tail and my days as a person with chronic pain were over. I had, or thought I had Fibromyalgia for about the last 25 years. I also have degenerative disc disease, am a veteran of 2 back surgeries and have had some rather nasty intestinal issues, including a hemorrhage. And psoriasis, which I have had since I was 17, though it would be at age 42 when it was finally correctly diagnosed because it exploded all over my head, ears, arms, backside and chest.

I started using gabapentin for the fibro in January 2015 and it worked like a dream. For 2 weeks. Then it abruptly stopped working. I deal with major depression so I can't even explain the emotional impact of being in pain for that long, the pain going completely away and then abruptly returning.

About a month ago my back went out again. I went to the ER and they gave me a packet of Prednisone pills and an injection of Dilaudid :woohoo: The prednisone relieved nearly ALL my pain. When I rechecked with my primary doctor, he looked confused and told me that prednisone doesn't get rid of fibromyalgia pain. Hmmmm....SO, I've been running in and out of the Rheumatologist's office having tons of tests and x-rays. On Thursday I will have a bone scan. The doctors now think I have psoriatic arthritis and that that is what I've had all along. Oh goody, a progressive autoimmune disease.

So that has been my life, for the most part. Dealing with family has been hard. Evidently my siblings can no longer deal with my illness as they no longer want any contact with me. It must really be rough for them. So really it comes down to my husband and myself. And here. :)
The following user(s) said Thank You: Tomrymer, acetophenol, riversidemarie

Please Log in or Create an account to join the conversation.

My Misdiagnosis...kind of a long read... 4 years 2 months ago #57829

I do hope that this is the final diagnosis you're offered and that it leads to more appropriate treatment. Fighting relentless pain can be a lonely experience and, unfortunately, families have this horrible tendency to believe themselves to be victims of an afflicted family member.
You deal with your health difficulties very well and have the support of your nearest and dearest and I trust that things will become easier for you.
The following user(s) said Thank You: riversidemarie

Please Log in or Create an account to join the conversation.

My Misdiagnosis...kind of a long read... 4 years 2 months ago #57838

I do hope this is the end of a long road of tests and pain, it would be nice for you to close the book on this and say this is what's wrong with me and have medication that helps you deal with it.

Please Log in or Create an account to join the conversation.

My Misdiagnosis...kind of a long read... 4 years 2 months ago #57854

Lets hope its upward and onward for you now :)
The following user(s) said Thank You: riversidemarie

Please Log in or Create an account to join the conversation.

My Misdiagnosis...kind of a long read... 4 years 2 months ago #57882

  • Jana
  • Jana's Avatar Topic Author
  • Offline
  • Platinum Boarder
  • Platinum Boarder
  • Posts: 791
  • Thank you received: 42
Thank you everyone. It feels so good to have a place to come and just dump everything.

I did get a preliminary report by mail that stated that my bone scan showed degenerative changes in my spine (we knew about that one) and also in my hands and shoulders. That one, the shoulders and hands made me burst into tears, as I'm an avid lover and doer of sewing, knitting and crochet. I did buy a bread mixer some years ago because I was having such pain kneading bread. I thought it was the fibro but fibro doesn't make your bones crumble. :angry:

My rheumatologist and I will meet asap and try to put some sort of pain treatment together. Having an autoimmune disease, I've found, takes time to get a full diagnosis. It takes tests more tests, over a period of years. Patience is not my virtue, but at least it's a start! :unsure:
The following user(s) said Thank You: riversidemarie

Please Log in or Create an account to join the conversation.

My Misdiagnosis...kind of a long read... 4 years 2 weeks ago #58535

Hope you clear all your illness soon Jana:-)

Please Log in or Create an account to join the conversation.

My Misdiagnosis...kind of a long read... 4 years 2 weeks ago #58548

I know about Osteoporosis and crumbling bones and how that effects you emotionally and pain wise. If you need to talk you know where I am.
The following user(s) said Thank You: riversidemarie

Please Log in or Create an account to join the conversation.

  • Page:
  • 1
Moderators: Able_Here_Team
Time to create page: 0.341 seconds