Bone and joint pain with early stage MDS

[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.

Al

• This reply was modified 5 years ago by Allan Romriell.

[arethamorce]

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[Kathy Stermer]

I have been using CBD oil for symptoms for over a year now and feel it helps at times with calming pain and anxiety and also helps with sleep. In addition, have been making butter with cannabis that I bake cookies eaten before bedtime to help with sleep as it seems sometimes my mind just won’t shut down. The oil comes legally from a company called CBS Pure which I can get in the mail all legal, the butter supplies not so legal in this state (Minnesota) where I was told I qualify for a card due to cancer diagnosis but costly and limited in choices of items available. My doctor is aware and ok with my choices. There’s no downside to trying something if it works and doesn’t have major side effects as in taking pharmaceuticals. I also am getting Vidaza shots and making my own salve for skin irritation from shots which works really well to minimize skin irritation and discomfort. Feel free to private message me if anyone wanting more specific details.

[Kathy Stermer]

As a healthcare worker I prefer a more holistic approach to treatment rather than relying on big pharma to manage my condition!

[Bob Cook]

Yes crackers and pasta are ok. Seems to be any bread with yeast. Flat bread/pita is ok etc.

[Author]

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