[LeslieK]

Multiple myeloma, arthritis & fibromyalgia: how to cope?

by LeslieK on Mon May 25, 2015 3:47 am

I wonder if anyone else also has other debilitating illnesses along with their multiple myeloma.

I have arthritis and fibromyalgia and the pain is horrendous as it targets my lower back, legs, and feet most of the time along with my multiple myeloma pain.

Unfortunately, the powers that be on the island I live have decreed that opiate use must be cur­tailed.

I was on 150 mg MST (slow-release morphine) twice a day with Oramorph (morphine solution) for breakthrough pain. I went down to 90 mg twice a day with my Oramorph to show willing.

However, after another trip to Intensive care earlier this year with kidney failure, I was told it was morphine related. I offered to reduce my intake of MST once more, but only by 5 mg at a time. That was agreed. However, I am not allowed Oramorph anymore.

I am now down to 80 mg MST twice a day, but I am in agony. I can barely walk. I have to use crutches or a Zimmer frame (walker), and I am confined to the home apart from one day a week when I go to our local hospice as a day patient.

I am going back to see my GP soon. Plus I have an appointment with the orthopaedic specialist in a couple of weeks.

I am also prescribed pregabalin (Lyrica), Co-codamol (Tylenol 3, acetaminophen / para­cet­a­mol and codeine), and duloxetine (Cymbalta), amongst other meds.

Any ideas as to what I can do?

[jhorner]

Re: Multiple myeloma, arthritis & fibromyalgia: how to cope?

by jhorner on Fri Jun 19, 2015 10:10 am

Hello,

There are a lot of people with Myeloma that also have autoimmune disease and para-autoimmune responses to the Myeloma. It sounds to me as though you have not been properly diagnosed. I often think I may have an autoimmune or paraautoimmune response happening as a smoldering myeloma patient because I am crippled by neuropathy, carpal tunnel, fatique, etc.. IVIG has alleviated most ALL of my symptoms. You should look into this treatment and if you don't qualify I would f/u with a rheumatologist to see if immunosuppression helps. Opiates will undoubtedly make everything worse in the long run.

Good Luck. I'm sorry for your pain and aggravation.
J

[NStewart]

Re: Multiple myeloma, arthritis & fibromyalgia: how to cope?

by NStewart on Fri Jun 19, 2015 5:15 pm

LeslieK-
I'm sorry that I didn't see this post before today. I agree that maybe you aren't getting the right kind of help for your complaints. Are you being seen by a myeloma specialist? Have you been referred to PT at any time to help with some of your complaints? Fibromyalgia responds quite well to exercise, stretching, strengtheing and aerobics, as well to soft tissue work through Myofascial release, or similar techniques. All of those same things can help with arthritis pain and dysfunction, too. Moving is key to managing both arthritis and fibromyalgia and for the fatigue related to myeloma. A really good way to exercise when you are in so much pain is in water. The buoyancy of the water takes the stress off of the joints so that you can do more exercise without pain.

Just some thoughts. I hope that you find the help you need soon.

Nancy in Phila

[Bar-none]

Re: Multiple myeloma, arthritis & fibromyalgia: how to cope?

by Bar-none on Tue Jun 23, 2015 2:38 pm

LeslieK,
Sorry for the delay in posting this. I was diagnosed with MS before my multiple myeloma diagnoses by 2 years. As you can relate to, life is challenging to say the least. Myeloma presented itself in a very noisy and demanding way with two compression fractures and loss of bowel function. It was an emergency. I had no time to "shop around" for second opinions or piddle on the Internet for hours reading the latest studies.

As a result, I was taken off my disease modifying therapy for MS and concentrated on the myeloma treatment solely. Fortunately I am in a city with a myeloma center with specialists so I am doing well.

Now since I was removed from MS drugs except symptom treatment I had to find alternative complementary things I could do to feel better. This was not easy by any means.

Starting out in a wheelchair I went to physical therapy and pool therapy intensely focused and determined to get out of that chair and walk. I am out of the chair now and able to use a rollator and quad cane with more therapy and going to the fitness center on my own. I believe the pool therapy was key to my rehab as I was having debilitating spasms until I started my pool work.

I am thankful to all my therapists, my wife who is by my side and the Lord who has always been faithful. Please do not neglect your spirit. It's the most important thing we have. Find a really good myeloma specialist to help you manage. Don't feel alone.

All the best and looking forward to reading your progress! BN