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another diagnosis ???
3 Replies
littleloey - July 12

Hi everyone, I have not been on for a while . Time for an update. It has been 2 years since I was diagnosed with FM . I also have scoliosis and have been diagnosed with degenerative disease of the lumbar spine. I knew many years ago that I had FM but it wasn't really something that interfered with my life. Two years ago something hit me all of a sudden. I had great trouble walking, I hurt everywhere and I was just overwhelmed with fatigue. This caused me last year to have to quit working and go on disability. They did every test you could think of and said it was the FM. What I always believed about FM was that you have ups and downs with it . In 2 years I have never had any of the up days. The symptoms have remained a constant especially the fatigue. Recently I began showing blood in my urine . I couldn't see it but they saw it in lab tests. Long story short they sent me for a scan of my kidneys. The scan came out Ok as far as the kidneys but they noticed something up near the bottom of my lung so they decided I needed to have a PET scan done. In this test they found 2 lesions that showed up as "Hot" or probable cancer. One is on the rear side of my chest wall on the left side and one on my right femur. They biopsied the one on the chest wall and it is cancer. Follicular Lymphoma. Luckily they found no cancer cells in the bone marrow or the spinal fluid. Although there is no cure for this type of cancer it is very responsive to treatment. I started Chemo this week and expect to have 2 days of chemo each month for 4 months.
For this entire 2 years I kept saying there is something that they are not finding. This disease also explains a lot of my symptoms the pain in muscles and joints and especially the extreme fatigue. I am very interested to see how I will improve after the Chemo. My oncologist thinks I will feel much better very quickly although he is not sure that my walking problems will improve as that is the one symptom that does not fit. Sorry this is such a long story but it is good just to get it out to friends who understand the trials of FM and all the illnesses that seem to come along with our weakened immune systems. Please keep me in your prayers as you are in mine. Sleep well tonight.


Jocelyn - July 13

I am so sorry to hear you have cancer. Thank you for sharing your story. People like us with autoimmune disease do have a difficult time trying to convince doctors that our pain can be from something other than FM. Last year I could hardly walk and my doctor blamed it on the Fibro, I just couldn't believe it. I almost had to quit work too. I went to a PT and he found out I had a problem with a hip joint. He worked on it for months and I am doing well. Your story is like so many of us. We worry that because of our weakened immune system our chances of getting cancer is higher. I have Sjogrens on top of the Fibro, so my risk is even higher.

When I have a problem, I never know if my doctor will look into it. I have pushed for many test and things have been found and some pain area's relieved, but not all. I do have pain all over at times, especially during the winter months.

My heart goes out to you and I hope your treatments bring you good health!


January - July 15

Hi littlejoey - glad you came back to keep us posted. I have read that lymphoma is very responsive to treatment, so I'm glad you found it, and you will soon be much better! I've also read that we all have cancer cells in our bodies at various times, but a healthy immune system will gobble up those cancer cells. So do everything you can to strengthen your immune system! Read up on those methods. Life Extension is a great resource for people who are undergoing chemo - they can suggest supplements to protect you from the side effects of the chemo, and they have doctors on staff who will work with your doctors. Just google them. They make and sell supplements that have been checked out by the FDA. In many cases doctors really cannot suggest alternative type supplements (due to drug company pressure, I've heard) - but IF YOU ASK ABOUT IT, they can work with you. I don't know if you are in a place where you can get medical cannabis, but there are a lot of promising studies on that also, if you want to google and read up on it. Again, that's a situation where doctors won't bring it up, but some will work with you if you indicate an interest.

As for the walking problems, don't you think that the degenerative disc disease plays into that?? I have a lot of pain in my hips (and that makes walking painful) - it is because of the disc disease.

Sending prayers and good energy your way. People can beat cancer, so keep that mindset! Don't JUST do the medical treatment, make sure you work to get your immune system strong again. Eat well, be well, and please let us know how you are!


joelbrodsky22 - August 1

Just wanted to send good wishes to all!



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