I was told the body creates new pain receptors...creating more and more pain

General
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A little background, I was originally dx'd by a Rheumy who I stopped seeing bc all he did by the end was test my ANA (which is positive) once a year to see if I had developed Lupus YET! I have been taking Lyrica since I was dx'd plus I was already on pain medication for a bad back. I also have several other conditions, none of which would involve this kind of widespread, chronic pain.

Now to the present, I see my PCP along with a Neuro who both decided after one of my ANA side tests came up with something they didn't understand that I should see another Rheumy. I went in knowing this doc didn't like narcotics, so I expected her to want me to wean off the oxycodone- fine, no problem, but I also expected a new plan. She also told me that over time, you not only become used to your dose and need more and more, but that your body actually creates NEW pain receptors to replace the ones the meds are combatting so that you are in more and more PAIN. I had never heard of this, has anyone else? On my second visit, I was down to a nominal # of pain meds at a lower dose, which I got kudos for, but was told she had no other plan. That I should find ways to "distract myself from the pain"- really?! I know distraction works for some things, I actually practice distraction for other things, but how do you "distract" yourself when you wake up in the middle of the night and the pain wont let you get back to sleep? Seriously, anybody got any advice on this? I would be grateful!

I just had a visit with my Neuro, for a while now I have been seeing his PA (who has Fibro), but saw him this time (a man I respect and whose advice I usually trust). This visit he basically told me he wasn't convinced about FM, that it wasn't a disease in itself, but a syndrome. I also asked about medical marijuana (it has just been legalized in my state, but only in oil form). He said chronic marijuana use could actually CAUSE FM. Never heard of this either (actually, I've never heard of marijuana hurting anyone in any way), anyone else? Both he and my new Rheumy told me that FM could be cured, or just go away. Again, Anyone?

Sorry for the length of my post, but I have been quiet for a bit because I have been sick much of the winter, and the flare I am in is lasting way too long. I also just lost my diabetic 12 yr old cat a few weeks ago. She was my buddy, and well I miss her. I'm sure my emotional health is effecting my physical. I am also very frustrated by the pain and confused about what to do about it,

Thank you,

Kim

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Hi shmoots. I read your whole post but mine will be brief( or so I think lol)

Well I understand and can relate to much of what you wrote .

About the narcotics. I have been on them for a long time but once one doctor mentioned to me about 'rebound ’ pain which you described. I decided to work with a neurologist I met s few years ago whom I trust and who took the time to listen to me and get to know me. I decided to wean off those daily 4x daily narcs so I could better ascess the pain I experience, how severe and what parts of my body they were in. Also working with my neuro trying out different drugs to see what helped or not . It is not such an easy process but I think it is the right and best thing I can do . In my case I have after many years found this neuro that I trust very much . I think this is very key in finding at least one who you trusts and you believes in you and has knowledge of all these strange and difficult illnesses. So whether it be a primary care, neurologist or rheumatologist , it is a good thing to find one that you can work with .

That’s all for now as I must rest now. I hope my bit of info can help you in some way . All the best!

HUGGGGGGGGS
oh one other thing about marajuana . It has become legal in NY
as well but I don’t how easy it will be to get it as far as the strictness of obtaining it. We won’t be able to smoke it here either.and it will be in some form of an edible or maybe the oil as well and I think it won’t be insurance covered . I don’t believe it causes any illnesses and I would certainly give it a try if I could actually get a doctor who has whatever requirements he needs to prescribe and then if I could actually get to one of the few dispensaries. Interesting how easily it is to get something harmful like alcohol .

Suzie