← Return to Chronic Pain members - Welcome, please introduce yourself

Discussion

Chronic Pain members - Welcome, please introduce yourself

Chronic Pain | Last Active: 13 hours ago | Replies (7067)

Comment receiving replies
@momij

Hi,
My name is Momi. I'm 52 years old and have been having a lot of medical problems for almost 5 years now. It started with renal failure due to contrast die for a CT scan. I was on dialysis for almost 4 months with no progress until I came to Mayo for a second opinion and was found to have an underlying kidney disease, Minimal Change Disease. I was treated with steroids, started recovering and tapering off the prednisone. I began having a lot of pain all over at that time. I then relapsed with the kidney disease and had to go back on the prednisone which took my pain mostly away. I thought the pain was from the prednisone withdrawal so tapered VERY slowly, working with an endocrinologist but the pain was still there. Eventually I was seen by rheumatology and diagnosed with undifferentiated spondylitis and fibromyalgia. I have also had 3 pulmonary embolisms and a DVT during this time, as well as being hospitalized for pneumonia. The thrombophelia doctor believes I'm getting the PEs as an added bonus of having autoimmune diseases as I have no other clotting disorders/factors. I also ended up with another autoimmune disease called lichen sclerosus. I also had 2 teeth break off at the root and a broken ankle from doing nothing in particular, though all my bone density tests come out fine. Anyway, I'm on blood thinners for life probably, as well as prednisone at a low dose. I tried humira for the spondylitis without much result. I've been having remicade infusions for the last year and a half which helps somewhat. I have a lot of back/neck/shoulder/elbow/fingers/hips/knee/foot pain, especially where the ligaments attach to the bone. I tried gabapentin and cymbalta and had to discontinue from terrible side effects. I can't take any NSAIDs because of my kidneys. I do physical therapy, warm water therapy, acupuncture, yoga and meditation, aromatherapy, psychotherapy, eat a clean diet with very limited results. I take oxycodone regularly which helps me to function at least a little. I am no longer able to work which breaks my heart as I loved my job. I haven't been able to fully accept the reality of my new life and the fact it probably won't get much better. I've been really depressed and anxious as a result and also take meds for that. I went to the Mayo's 2-week outpatient Mood Disorders Program this fall as I had been feeling so down, and sometimes suicidal. While it was a good program and I certainly learned some new skills, I'm not sure it was the right fit for me. Maybe I should have tried the Chronic Pain Program. I also attended the 3-day fibromyalgia program at Mayo the year before and I think I didn't go the the Chronic Pain program thinking it was probably a more intensive version of what I learned in the fibromyalgia program. I just wish for a way to come to accept and move forward in this new life with gratitude and happiness. I mostly live with a feeling of loss and hopelessness. Sorry for the long version... I look forward to connecting with others going through the same sort of things.

Jump to this post


Replies to "Hi, My name is Momi. I'm 52 years old and have been having a lot of..."

Hello @momij, welcome to Connect. Thank you for your detailed post about the challenges you are facing with all of your diagnoses. You don't need to apologize about how long your posts are as that is what this community is for. Connect is a great place to share your thoughts and experiences with other members so that we can all learn from one another and give positive support to other members experiencing similar situations.

Here are some conversations happening on Connect that you may want to read through and partake in regarding some of the diagnoses you have:

- Ankylosing spondylitis http://mayocl.in/2dvmQk2
- Fibromyalgia pain http://mayocl.in/2hgUGcv, this topic also has a lot of discussion that includes Gabapentin and its effectiveness/side-effects as well
- Pain rehabilitation http://mayocl.in/2hj0DBM
- How many people have autoimmune diseases or even know what they are? http://mayocl.in/2h38vbb, a few members discussed having lichen sclerosus

These are just a few conversations to help you get started and help you get Connected with other members. I look forward to seeing more of your posts in the near future @momij.