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Bone and joint pain with early stage MDS

Home forums Patient Message Board Bone and joint pain with early stage MDS

This topic contains 3 replies, has 3 voices, and was last updated by  Allan Romriell 2 months, 1 week ago.

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    Kari Gaudette

    I have recently been diagnosed with early stage MDS. I have a lot of bone and joint pain and thought this may be caused by the syndrome. But my hematologists say there is only pain with cases of untreated syndrome and I should just experience shortness of breathe and fatigue.


    Bob Cook

    I also have the joint pain. Especially the knees and shoulders. I blame the MDS but being 56 it could just be age. My Dr doesn’t link it to MDS either. I noticed it flared up worse with certain foods…I know sounds crazy. But within minutes of eating bread, chocolate or caffeine it flared up bad, so bad I had difficulty getting up and down from sitting, woke up in pain from my knees just rolling over in bed and bending my knees….. So I’ve eliminated those from my diet and it’s almost gone. I was going to see my family doctor about it to see if arthritis or something else but I seem to have it under control so I’ll wait. Hope you find something that works.


    Kari Gaudette

    Thank you for the suggestion. Can you eat crackers or pasta?


    Allan Romriell

    Kari,I know they never list joint pain as a symptom of MDS but a lot of people with it complain about it. I am almost 2 years since diagnosis and my joint pain seems to be getting worse. Like Bob I know age and old injuries factor in(I am 66) but it just seems to be more prevalent than before I was diagnosed. I haven’t noticed any specific food angle and I do eat a lot of crackers and breads, and chocolate(I am trying to cut way back on sugars however) but doesn’t seem to effect it. I deal with it with either Tylenol or Aleve and joint relief type creams. My hematologist is aware of my pain med use and is ok with it so I will keep doing what I am doing for now. The fatigue and shortness of breath are definite factors for me as well. I have to take more frequent breaks when doing yard work etc, and some stuff I just don’t have the stamina for anymore. Other than that life is fairly normal, my blood counts have been fairly stable and my Dr is quite pleased with the slow progress of the disease and feels I could still go a few more years before any treatment is needed. I hope he is right. I wish you all the best in your struggle with MDS, hopefully yours will remain stable for years to come.


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