[Myidea]

My story, my pains

by Myidea on Tue Aug 27, 2013 3:32 am

My story..

I'm Martin Giles, UK expat living in Malmö Sweden since 1985. I was born in 1962 and had a pretty healthy life until Sept 2010 When I started getting a pain in my back, general all round weakness and fatigue. I just couldn't concentrate, it got to the point of not being able to work… Six to seven months I was going back and forth to my doctor who sent me for every test every x-ray in the book, I won't write them all down as there has been so many and truthfully I can't remember them all. I will have to make a list. Then in March 2011 my doctor called me in about some other blood tests he had done, he carried out a bone marrow biopsy there and then that afternoon I was diagnosed with multiple myeloma. Well they thought my symptoms matched those of multiple myeloma. Funny thing was they did all the X-rays full body, Head, MRI, CT and PET scans and no bone lesions were seen nothing really showed up, but I had a positive bone marrow biopsy , my M-spike was 49.

They waited until Apr 2011, I had terrible pain that whole year, I was on pain killing meds as I am now, but I didn't want to start treatment until they were totally and completely sure it was multiple myeloma. They were and I started treatment with 4 circles of Velcade then had a SCT in May 2012. After 3 months of feeling the worst I have ever felt in my life, my M proteins were down to 15. I was given 3 more circles of Velcade and Revlimid we got the M-proteins down to 1,5. I am so lucky, nearly a total remission. My doctor recommend maintenance of Revlimid, but I was not interested at the time because I felt we had done a great job plus I had horrible side effects from the Revlimid.

I'm still in terrible pain, it has been over a year now. I don't sleep more then 3 hour max without waking in pain. After 5, 6pm the pain gets so much I need Sativex. I don't work, this small piece has taken 3 days to write, I can't sit for more than a few minutes before I fall a sleep. I have the same pains as I had in Sept 2010… I'm in so much pain I am on the following meds daily Methadone 10ml, Fentanyl 150µg/h, Lyrica 450mg, Palexia (Tapentadol) 300mg, Cymbalta (Duloxetin) 60mg plus Sativex when needed. What I'm asking is there anyone out there who has had so much treatment but still suffers from so much pain. The reason I ask is because I have had every test going, they have tested for every kind of illness, without any results! My doctor believes and sees the symptoms I have but doesn't really believe 100% that they are all multiple myeloma related.

So is there anyone out there like me, who is in so much pain. It doesn't really tally up with being multiple myeloma related! If so please can you be in touch. I apologise if my explanatory skills aren't as good as they should be, but the meds don't help very much.

Thank you.

Happyendings to all!

M//

[must love cats]

Re: My story, my pains

by must love cats on Tue Aug 27, 2013 8:32 am

Myldea, I really sympathize with you as I am going the same route. Have lots of pain in rib cage back and around front and under bra line - It harts terrible to wear a bra.

I have had the rib pain for seven months now and now the hips have started to hurt really badk and it feel like my upper thigh is still and sore along with my knee which I had torn or fractured something in their last tyear. I tested twice for RA and have gone to see rheumy on September 18th for results of Xrays and blood tests. I have tested twice for RA and I know that one of the things you can have with that is multiple myeloma.

I am going to ask the rheumy if he will refer me to an onocologist so I can talk to them. I am so afraid it is cancer and I think I am hitting a brick wall with my diagnosis.

He thinks it is anklosing spondilitis,. Will keep updated with outcome