@rockinrene65 - welcome to Mayo Clinic Connect. I'm sorry your pain is horrific. Sounds exceedingly hard.

Glad you've connected with @jenatsky. Hoping others in this discussion will also have ideas for you on how to manage the pain short- and long-term, such as @cjr14 and @marietter. If you've not already met @jenniferhunter, I'd like for you to meet her, too.

A couple of other support groups on Mayo Clinic Connect you may consider following, due to the conditions you have and mentioned, are:

- Blood Cancers & Disorders Support Group https://connect.mayoclinic.org/group/blood-cancers-disorders/, and especially this discussion in that group:
- Adult Langerhans cell Histiocytosis and CMML https://connect.mayoclinic.org/discussion/adult-langerhans-cell-histiocytosis-and-cmml/

- Diabetes & Endocrine System Support Group https://connect.mayoclinic.org/group/diabetes-and-endocrine-problems/

When you said you are seeing your neuro Friday, I believe you are talking about a neurosurgeon, but you also could be talking about a neurologist? Will you let us know? Do you have some questions written down that you want to ask him or her at that appointment?