Hi, I was diagnosed at the end of January 2014. I had suffered various symptoms on and off for 4 or 5 years, including fatigue - particularly walking up hills or steps - and what feels like bone pain in my legs and back. Most debilitating is head pain. Feels like I have been hit on the back of the head by something blunt.
This I first experienced following a whiplash injury, so I thought that was the cause, but it kept coming and going. The fatigue and other pains also came and went for various periods, although have been pretty constant since last November. Leg pain now means I can only sleep with a pillow between my knees. Otherwise, the weight of one leg on the other really hurts my knees, although I don't suffer any knee joint pain during the day. Recently, I am aching generally all over, including shoulders, whole or arms and back. Walking can feel like walking through the sea.
Fortunately so far the cancer is not progressing. The cancer cells are throughout my spine but an X-ray in December 2013 showed no damage to bones, so I appreciate that I am fortunate.
It is very frustrating, though, to be constantly told that I shouldn't be having symptoms and they don't relate to the cancer.
I have now had a smooth muscle blood test that showed an elevated result. Consultant not sure whether the paraprotein is interfering with the result or if it could mean I have some other condition. I have now been referred to the Rheumatology Department. Having read others' experiences I suspect nothing else will be found.
Not sure why, when so many with smoldering myeloma have symptoms, medical professionals continue to say these are not related to the cancer ...
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Re: Asymptomatic multiple myeloma diagnosis
Hello Heather and welcome to the Forum.
I am sorry though that you qualify to be here.
Be that as it may, it's good they were able to diagnose you even if you are "asymptomatic," as the devastation many experience because of late diagnosis interferes greatly with quality of life.
I am only MGUS, which means I just have a paraprotein and no indication of disease. I am writing though because what you write describes almost exactly how I often feel. I was diagnosed with fibromyalgia almost 20 years ago. There are now a lot of good medications out there, but it's good you are being referred to a rheumatologist.
The issue with fibromyalgia is that it sometimes becomes a catchall and there aren't a lot of solid clinical data to point to what causes it or how it can be treated. I am on gabapentin [Neurontin] for the pain and pramiprexole [Mirapex] for significant periodic limb movement disorder (PLMD). Some people confuse it with RLS. Both of these seem to help.
I wish you well and I hope you can find the support you need. I would be interested to hear the outcome of your meeting with the rheumatologist.
I am sorry though that you qualify to be here.
Be that as it may, it's good they were able to diagnose you even if you are "asymptomatic," as the devastation many experience because of late diagnosis interferes greatly with quality of life.
I am only MGUS, which means I just have a paraprotein and no indication of disease. I am writing though because what you write describes almost exactly how I often feel. I was diagnosed with fibromyalgia almost 20 years ago. There are now a lot of good medications out there, but it's good you are being referred to a rheumatologist.
The issue with fibromyalgia is that it sometimes becomes a catchall and there aren't a lot of solid clinical data to point to what causes it or how it can be treated. I am on gabapentin [Neurontin] for the pain and pramiprexole [Mirapex] for significant periodic limb movement disorder (PLMD). Some people confuse it with RLS. Both of these seem to help.
I wish you well and I hope you can find the support you need. I would be interested to hear the outcome of your meeting with the rheumatologist.
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
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