I once heard an analogy for overcoming acquired hearing loss, or maybe it was some kind of vestibular disease - was so long ago cant recall the specifics. What is pertinent is the striking resemblance of the fight for gold to the fight for Fibromyalgia or any chronic illness. Fibromyalgia is especially demeaning because of the inconsistency, the stigma and misunderstanding and the danger of being your own worst enemy. Work too hard and you earned yourself a week in bed wracked with pain. But this article is not about the tragedy, its about the hope - hence the gold. I have come so far in my fight I can now run a 10k and its a win win because the comerderie, exercise, support and reaching for a goal - that has been an elixir for me. There is no comparison to me now and to who I was 2 years ago. In my confidence, my energy, my professionalism and where I am in my career ad even to my personal life with regard to community, friends, dating and family.
I shared with my boss of a new drug I discovered to manage symptoms of IgA deficiency and auto-immune disorder (pseudoephedrine and allergy shots - but more about that in other posts) which led to a discussion of Fibromyalgia because what do you know - someone he cares about suffers from this as well.
Usually Fibromialgia is like the gift that keeps on giving - in reality its like the pink elephant noone can see thats standing in plain site. Noone heard of it until someone they know falls ill with it and then they still dont know what to do about it. So here is what I have learned and my advice.
Medical support - see all the relevant doctors as much as you can and then stick to the ones that are most helpful. I strongly recommend seeing a psychiatrist, a neurologist, a rheumatologist and to have a really good family doctor who takes responsibility for your case.
If you live in Jerusalem I have one to reccomend of each specialty, Hit me up.
Drugs. I love drugs. Marijuana is a long process so get on it right away. You will need a letter recommending this from two specialists - mine were a hematologist and an infectious disease specialist - I think but was so long ago. I also needed a psychiatrist to state she didn't "disagree". I paid out of pocket for someone willing to write that for me. Worth every penny.
Its a long road. Get on it and dont give up.
Research what components are best for you. Generally THC makes you high and CBD is more analgesic but I am not sure - so look into it, pay attention to your reaction and be insistent with your rheumatologist and pharmacist to give you guidance. The potency runs out quick and there are ones suited for sleep and those suited for day. I also learned to play around with the dosage if I am in more pain vs less pain but want to function. Be careful if you are going to work or engaging in something dangerous such as driving or handling machinery.
Disclaimer by the way - I take no responsibility for what's written here so do your own research.
More drugs. Pseudoephedrine was effective, as is advil, tylenol and optalgin. Just be careful not to overdue the amounts and stuff it can be toxic to your kidneys and liver.
Milnacipran. Its an SNRI that has been proven effective for Fibromyalgia.
work - that is your best friend in this fight. even if you don't need the money. and even if you cant meet your financial needs anyway. and best to have a job where someone needs you and there is a schedule, a work environment, support, friendship and a unique skill set required.
exercise - dont overdue it. I used to push myself for yoga cuz I was told this is magic for Fibro - it was horrible. Get personal trainers that you trust and listen to your own body. I paid 600 shekel for a private specialist to tell me to join a workout group. He was right.
What I didn't need anyone to tell me is - swim like a fish. There is no pressure on the muscles and joints. And the water is soothing.
Join a support group if you can - in Israel there is a group called "Shades of Purple" גוונים של סגול
Learn and practice deep breathing (diapragmatic, abdomnal muscles, ect) and meditation. Also mindfulness.
Dr. Jon Kobat Zinn
Most of these ideas I got from YouTube lectures.
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