pain

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• September 5, 2018 at 6:35 pm #37281
  debbie stern

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  I was diagnosed with MDS in 2/17 and have been on “watch and wait” since then. My Hgb one month ago was 11.1, but my platelets had dropped to 142 from 172 -3 weeks prior.

  The last several weeks I have been having much more pain than previously…an aching sensation in my thighs and lower back. I am wondering if this means progression? Do others on “watch and wait” have aching pain? If so, where? May I ask what people are using to help? I do take a high CBD, low THC oil in the late afternoon, and it helps a little bit. Maybe I need to take more….or add a medication?? Thanks so much for any response!

  September 6, 2018 at 9:34 am #37284
  Allan Romriell

  Participant

  Debbie,
  I was diagnosed 6/17 MDS-RS low risk. My hemoglobin and platelets were right about where yours are in July although my platelets have been any where from 75 to 152 since diagnosis. Hemoglobin has ranged from 11 to 12 but seems to be slowly dropping from the high of 12 last October. One thing I had noticed even before I was diagnosed, (mine was discovered in routine physical blood work) is an increase in joint and bone pain. Mine is worse in my hips and legs. I do spend quite a few hours each day on my feet and I know that and my age (65) contribute but I feel the MDS is contributing as well. My oncologist said using Aleve, Tylenol or similar pain reliever was ok as needed. I use Aleve type and it doesn’t seem to make any difference in my numbers. I have gone without between blood count checks and with and it doesn’t seem to have any effect. I have also tried CBD oil and it helps, I usually use it on the effected area at bedtime and it seems to help me sleep better. I have never seen bone or joint pain listed as a symptom of MDS anywhere that has info on the disease but in reading patient stories on blogs and this site I have noticed it is mentioned quite a bit so I feel it is part of living with MDS. I hope this helps, I hope you continue to do as well as you are right now. All the best.
  Allan

  September 10, 2018 at 3:33 pm #44005
  debbie stern

  Participant

  Hi Alan, Thank you for responding. I have seen posts where patients have said that an increase in bone pain seemed to come with progression for them. I am so hoping that is not the case, so good to hear it did not mean progression of disease for you!My pain migrates from under knees to thighs, and lower back/hips. I will try Aleve. I am always scared to take anything that might effect blood counts. May I ask where your platelets were at when you noticed the aching pain? Feel free to write me at: deblevstern@gmail.com. As I said, mine dropped to 142 from 172 when I noticed the pain starting….I guess I need to get another blood draw and see if there is progression…is anyone on pain killers for this migrating achiness? If so, what?

  September 10, 2018 at 6:10 pm #44006
  tam

  Participant

  Hello Debbie. I have low-risk MDS-unclassified diagnosed in 2013. I will be 65 in a few weeks. I am also very active working out 5-6 days per week. I refuse to take pain killers due to their potential impact on my counts. I prefer reducing pain and inflammation through diet. If possible, include more ginger, turmeric, blueberries, wild caught salmon, tart cherry juice, and seeds in your diet. Good luck.

  September 11, 2018 at 9:28 am #44008
  Allan Romriell

  Participant

  Debbie,
  I had started to notice more leg pain and being more tired in the early spring of 2017. In late april I went in for a routine physical and when they did blood work my platelets were 75000 which alerted my doctor and he sent me to the hematologist which led to BMB and diagnosis in june of 2017. By july or august platelets were back to low normal and have stayed in that range mostly since then. I know some of my pain is related to activity but I still feel the MDS contributes. I have blood drawn every 3 months and see my Hemo guy at each blood draw. I feel like my counts probably bounce around some in between, it seems I have a few days that I am really tired then I bounce back to almost a normal feeling, hard to explain really. I hope we all continue stay on a fairly stable course, good luck.

  September 12, 2018 at 8:38 pm #44016
  Donna

  Participant

  Hi Debbie,
  They have been watching my blood counts for several years, but I have only been to hemotologist/oncologist the last 4 years. I am just watch and wait. My WBC run around 1.2 to 1.8. Hemoglobin is 10.5 and platelets are 63,000. My RBCs run a little low too. I have back ache and back pain, but I have been diagnoses with osteoporosis, so I’m not sure what is causing the pain. I guess I have some back problems too by MRI. I also have dizziness which is from my ears. I have been told to be very careful with taking any anti-inflammatories, so I just take Tylenol. It only helps a little, not like Advil, but I too am afraid to take things that might effect my counts. Good luck to you and I hope you stay on watch and wait for a long time….me too. Donna

  September 18, 2018 at 11:02 am #44056
  Nancee Noble

  Participant

  I was diagnosed with MDS eighteen months ago. Hemoglobin l0.5 Platelets 23. I get weekly injections of Procret. Just recently I have been having severe Rest pain whenever I lay down. Usually in my calves. Every night and sometimes days if I try to take a nap. My GP started me on Gabapentin. Am waiting to see if it affects my platles. Anything you can add will be appreciated.

  September 18, 2018 at 3:03 pm #44067
  LeAnn Duke

  Participant

  HI Debbie, I was diagnosed in 2015 with MDS and have been through the stem cell transplant which has failed and am now back to blood transfusions and chemo again. I have experienced back pain and leg and foot cramps, but I think it’s mostly due to the anemia. My hemoglobin with transfusions rarely gets above 11 and most times stays in the 10.5 range right after a transfusion and then begins to drop again getting down in the 7 range. I can’t let it get down more than that or I’m down! Mostly the back pain comes when I’ve been on my feet or doing household chores. Standing a lot hurts me as well. Any more than 10 to 15 minutes of standing makes my back ache and i need to sit. Tylenol seldom helps with that pain but my Dr gave me Tramadol which does help, but I try to take it at night when i need it. The leg and foot cramps hit when I started on the Vidaza which is the chemo they are using now. The contraindications do state that it can cause leg cramps and they told me to take magnesium for it. I am trying the Natural Calm powder right now and it is somewhat effective. Doesn’t always work though. I wish you good luck!

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