Hi @bloomthesickler The biggest desire all of us have when we receive our bone marrow transplant, is the hope for a normal life. To have everything be fine again. For most of us, well, we reach a new normal where things are fine, just different. Our new immune system, courtesy of our donor, helps to keep us safe from illness and keeps our blood supply healthy. However, it will never be as robust as our original immune system we were born with. So we have to be vigilant to avoid illnesses, infections and over exerting ourselves.

The transplant is traumatic to both mind and body because everything changes…not only from the disease we had and the BMT process itself. We can also go through a mourning period of feeling loss for everything that was familiar for a while. Until we learn our ‘new normal’. I hate that term but it is appropriate.

I’m relieved for you that the underlying Sickle Cell Disease has disappeared. Unfortunately because of the past damage to your body from repeated sickle cell crises attacks it may take time to reverse the chronic pain sensitization. Apparently you’re not alone in this. Articles I’ve been reading since talking to you, mention that about 40% of patients who had the BMT will still have similar pain crises for a while.
I know there’s a huge stigma with opioids and that it sounds like your doctors have said that you’re just trying to get pain meds. Well, from everything I’m reading, that is highly insensitive of them. Because what you are experiencing isn’t in your head! What you’re experiencing is very real and I’m so sorry dealing with this level of pain. There are many articles supporting your difficulties post transplant for SCD.

* here are a couple of the articles
-National Inst. Health:
https://www.nccih.nih.gov/research/research-results/new-insights-on-pain-and-opioid-use-in-people-with-sickle-cell-disease-after-hematopoietic-stem-cell-transplant
-Science Direct:
https://www.sciencedirect.com/science/article/abs/pii/S1473050222002178
I’ve also been looking for online support groups where you can talk to other members who have SCD, many whom have had a BMT.
If you’re on Face book I found these two sites:
https://www.facebook.com/groups/BMTSickleCell/
https://www.facebook.com/groups/795987034782953
Also two great resource sites I follow are these listed below. You can find pod casts and really good articles talking about survivorship and how to cope with life changes after the transplants.
Two websites I follow are:
- National Marrow Donor Program
https://www.nmdp.org/
-BMTInfonet
https://bmtinfonet.org/
From everything I’m reading, proper pain management is key to helping patients recover post BMT. It’s suggested that chronic pain management strategies, including opioid and non-opioid medications, along with physical therapy might be helpful until the nerves can modify and settle down.

Have you been offered any therapy or medications to help you manage your pain?