March 14, 2006 at 2:57 pm #12293PaigeSMember
My Dad has been in horrible pain the past week. It started in his lower back and has progressed down to the knees.
His PCP gave him pain meds and said if it continued to go to an ortho dr. We did and had a bone scan and MRI. When those results came back he called it metastatic bone disease. I spent all weekend thinking that my Dad had some other type of cancer that no one had caught and it had moved into his bones.
The ortho sent the results to the oncologist and she said it was caused from the MDS. Has anyone else experienced intense bone pain?
She said she would prescribe Lortab (?) for pain. It seems like there should be something else we could do??!March 14, 2006 at 6:32 pm #12294lynetteMember
Sorry to hear about your Dad. Are your Dad’s blast cells above 20-30%. MDS can cause bone pain, but Acute Leukemia is more likely. As the blast cells crowd out the normal cells, the person usually experiences pain. However, has your Dad ever had prostate trouble? At his age prostate cancer should also be considered as a possible cause of metastatic bone pain.
Bone pain can be very, very painful. He will probably need pain medication for good pain control. There are many choices out there.
You’re in my thoughts and prayers,
LynetteMarch 14, 2006 at 6:41 pm #12295NeilMember
Bain in joints and in the large bones in the hip and legs is common with MDS. There are some who claim it is due to the larger amount of marrow in these areas. Not certain this is accurate, but kind of makes sense. Disease in other parts of the body causes pain to those areas, why not in larger concentrations of marrow that is diseased.
Would certainly have it checked out and be sure the doc doing the checking has an awareness of MDS and how it has an effect on others parts of the body.March 15, 2006 at 2:55 am #12296lindajoMember
I have had bone pain since the beginning. Darvocet is what I use for pain and it doesn’t make me drowsy nor is it addictive.
I have also had great relief from my chiropractor who does accupressure treatments and from my massage therapist who does swedish massage.
It also helps if I drag myself to the YMCA and do slow and easy aquasize. That is a certified class for arthritic patients. Sometimes the pain is so severe that I need help getting to and from the pool but it always helps. LindajoMarch 15, 2006 at 8:02 pm #12297margota1Member
Here I am again. Lee has had such pain in his right thigh since last week that I was convinced it was a deep vein thrombosis. Our local MD order bilat. untrasound of his thighs and all is neg. Pain cont. and only relived with Darvocet. We are going at 2 PM for MRI. I personally think he has a bulging disc but whatever it is we can not go forward with Hutch until we get this problem identified. This place is great! When you talk with your friends, no matter how much they care about you, no one really understands the complexities of all if this until you have been there. Thanks, MargotMarch 16, 2006 at 5:24 am #12298kristykMember
Hi Margot and all,
My Mom has had similar pain. Two epsiodes, once back in November that lasted about a week. And recently last month that lasted for about 3 weeks. She was prescribed several different pain meds including oxycodone. Nothing worked well enough to justify the heavy duty meds So she stopped the pain pills, didn’t like how they made here feel. They did put her on neurontin which she is taking daily. Either the pain stopped on its own or that med is helping.She feels ok for past few weeks. They did MRI on her back and results do show some bulging areas but they think it looks like normal aging degeneration/bulging. I don’t know if this is the cause of these periodic episodes of leg pain or if the MDS and AML is the culprit.. it does seem to be common with this cluster of diseases. My conern was that her leukemia had spread to her CNS and spinal cord or something, which I kow can happen, but that does not appear to be the case, at least i don’t think.
Glad to hear they will do MRI for Lee…best of luck and hope Lee can get some relief soon. Your dad too Paige.
KristyMarch 16, 2006 at 5:18 pm #12299PaigeSMember
I had not noticed this question on the boards before and thought it probably was not related to MDS, but once again, you just never know what this disease will do to you!
The orthopedic dr. said that his back is just worn out because of all the lifting and hard work he’s done for the last 74 years! There was a bulging disk too.
Our hemo/onc dr. basically said that MDS does not cause pain and it had to be from something else and just offered to give pain meds. At least the orthopedic dr offered to give cortosone and some other kind of shots. I just hate to have him suffer like this!
Thanks again for all the responses! You guys are great!July 9, 2018 at 3:21 am #36793akshay orthoParticipant
I stand for 8 hours while at work and was having tremendous heel pain. I tried a couple of other brands that were supposed to help alleviate the stress of standing for hours, but they did not help. The pain moved from my heels to my arches or the sides if my feet. I ordered orthofeet shoes and absolutely love them. My heel pain is gone!!! My feet are finally pain free.July 9, 2018 at 9:57 pm #36803DonnaParticipant
Hi to all
I have a lot of back pain, but I also have osteoporosis, so it is hard to tell what is causing it. I had an MRI and it read that there was an invasive bone marrow process in the spine which could be myelofibrosis or an anemia. My doctor said he sees this on MRI with MDS because the bone marrow looks different on MRI. IN my case, they have ruled out myelofibrosis. I don’t know if this “process” causes pain. I do have a few issues with my spine unrelated to MDS so who knows? I have been saying for years that I was in great health except for my musculoskeletal system.
DonnaOctober 7, 2020 at 2:02 am #53122billy mackesParticipant
You can try going to a chiropractor North York Ontario that helps in managing pains in bones and joints.October 7, 2020 at 3:40 am #53125Marie MiguelParticipant
I’m sorry to hear about your dad. There’s not that much that I could say. It must be hard to see him in pain, but following the doctor’s instructions would be good. Have you asked for a second opinion? There are times when other doctors have a different approach to pain management. Hope he gets the treatment he needs.
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