I wonder how many of us hear from our doctors that we are extra difficult cases, extra complicated, etc. and why doctors would consider that a valuable thing to say. Reading Neil Nathan's Toxic was the first time I felt like someone could come up with a plan that actually worked for my soup of illnesses, and could figure out what to address first.
As for your primary question, I have used wheelchairs often at various points in my illness, although usually not from pain; for me it has been because of disequilibrium, POTS, weakness, vertigo, PEM, etc. I think it's a good idea to use mobility devices and not push ourselves when our bodies are so challenged. Any movement that causes you more pain also depletes your adrenal system, and goodness knows we can't afford to do that. So I advocate going as easy on yourself as you can, personally.
For pain issues, I have found the following helpful: CBD oil (ingested or topical), arnica, craniosacral therapy, the chronic pain app Curable, braces, essential oils, and DNRA (limbic system retraining). Other ideas I have not tried: low-dose naltrexone and saunas.
I'm sorry that I don't have more advice for you, but my heart goes out to you, and I wish you swift improvement.
Dr. N was actually the one I consulted with about
BVT and my case in total, and he (and all) of the doctors I’ve had have said the “difficult case” thing. My current LLMD said it again on Friday. It’s an interesting question you pose, saraeli, and I don’t know the answer. I do know if we were all in remission within months of one treatment, we could be considered as having an easy case. But, we’re all struggling so we’re all considered difficult I guess.
I’m definitely having less knee pain with the cane. It’s helpful, and I would advise using mobility devices as well. I am still scared if I had to use a wheelchair because I just purchased this home, and it’s not accessible at all, and I don’t have money to sell it, and where would I live if I did? Staying here, I would need an at home caregiver for more than 3 hours (which I’m used to) or build the house to be accessible, and I’m already running out of money. I will have to borrow against this house within a year, or go through bankruptcy, which the former is a better option. There’s no end in sight to these diseases, and money is a worry.
I appreciate your kindness and I wish you well too. I am grateful for the list you typed out. Unfortunately CBD oil, or anything MJ derived, does nothing for me (and yes I’ve tried quite a few different products and strains), but I do use Kratom, and I use it wisely, and I never go over (or close to, which may be my issue) the therapeutic dosage. I’ve talked with my LLMD on Friday about
LDN, again. He’s against it, and I can’t ever remember why. We switched up my treatment from one peptide to another (still on 2 antibiotics), with the addition of ozone inside my infrared sauna here at home (therasage.com is where I got the ozone module), took off supplements wreaking havoc with my MCAS, added another peptide to control that, and we’ll see after 3 1/2 weeks how I do. That app is intriguing to me.
I know this was a very long response, but I am hopeful this helps someone else to know who I’ve been talking with (especially since you’ve named one doctor, and I’m not good at knowing when to do that or if I should) and where the “difficult case” responses came from, the number of times (6 out of 6 doctors), plus where my treatments are going. My intention certainly was never to single myself out as “something special” because of that moniker (Who would want to be told that anyway)? I’ve often wondered if anyone else’s LLMD has introduced peptides to them? Anyway, I believed one of those peptides was the culprit in doing harm to my joints.
Thank you again