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Marisa Pagan

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Mar 18, 2022
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DX FIBRO
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State
PA
Hello Everyone! I'm new and here for knowledge, support, and friendship. I was recently diagnosed...sort of. Since 2008, I have been told I have RA, then Lupus was added, then Fibro on top of that. In 2017 after many, many different cocktails, including biologics, I got fed up and stopped everything. Stopped all my meds, stopped seeing my Rheumy, and just stopped complaining to anyone about how bad I felt. I lost several "really good" friends, got divorced, and had to find a job working from home before I got fired (only blessing that came from COVID was working from home). I am in a better place now as far as who I consider a "really good" friend, I am in a slightly new relationship (2 1/2 yrs in), and happily working from home with a totally different company. Unfortunately, over the past year my random aches and pains have been rearing their ugly head again. I have had several stressors that could be the cause, but I can only do so much about that. With the start of the new year, I went to see a new PCP and a new Rheumy and asked that I get a work up like they have no idea what I have been dx'd with in the past. With that my new Rheumy did a ton of new tests and was able to completely rule out any signs of RA or Lupus and diagnosed me with Fibro. He told me he does not need to see me and that my PCP can treat me, so I am back down to only one dr. I am being treated with Cymbalta and Lyrica and have been on those for a month now. I don't see a huge difference yet, I have had bouts of chest pain (costochondritis) along with constant back pain. I already have signs of Osteoarthritis in my neck, back, and my knees are really bad. I'm 48.
My next step is to go to a Pain Management Center - I go next week. I don't want more meds, but I NEED to find a way to manage this pain. I have become more and more depressed and anxious. I'm seeing a therapist but do not feel she is a good fit, so not sure what I'm gonna do about that.
I have read some of the posts in the forum and WOW! there is some major info in here and you guys seem so welcoming and supportive. I know I'm not alone in this, but seeing what other people are going thru and how they go about handling it is so inspirational to me. It helps me believe I can have a better, more fulfilling life. I just need some new tricks to try. I'm so grateful for finding this community.
 

JayCS

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Sep 5, 2020
Messages
1,790
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Hi Marisa (and welcome again... ;-) )
Sounds you know pretty well what you're doing already!
Have you tried good gentle understanding physios for your aches and pains?
"Funny" you getting Lupus ruled out - any idea what it was that the 2nd rheum. tipturned?
Also "funny" how I'm realizing more and more the strange ambivalent role that rheums take up. In my case also. First dismissed fibro, 2nd 3-4 months later diagnosed it, 6 months later I asked for a referral to a rheum./fibro clinic who again only checked a little bit for other things (even a Sjögren's suspicion thrown around by other docs of mine didn't impress them) and only let me try out all their physio and pain management stuff, which was interesting, mainly harmful, and didn't show me much else than I was doing already (but I knew that beforehand, going there was more strategic "for my employer".)
I guess you won't be staying on Cymbalta & Lyrica if you don't see much of a difference, or are they worth their side effects for you?
I'm curious if your Pain Management Center is good for you. I think it's down to the chemistry between them and you, if they are able to relate to you personally and if you can make it serve you as well as can be.
You say you're seeing a therapist: I had to change twice, the ones that were recommended to me by a sleep psychiatrist weren't at all helpful (I was way beyond them, and they weren't into living with 'pain'), then one one hour session in the fibro clinic with a pain trained psychologist yielded only strange ideas, but now I'm back with a therapist from yonks ago who I knew pretty sure could relate to me, and so it was. Like the one before she cheers me on my way, but also has good ideas on hand to just sort any annoying things out and get well to terms with them quickly, like you'd expect a psychologist to do. She understands my 'radical acceptance', whilst working on everything continually and diligently, but may have suggested similar to me if I hadn't been there yet.
So any chance and wish to change yours?
Hope we can accompany you on your continuing journey... 🚶‍♀️⏫
 

sunkacola

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Dec 2, 2016
Messages
2,174
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
Hi Marisa, and welcome to this forum.

In my experience the pain management doctors were only useful for giving me prescriptions to pain medication, including opiates.
Now, I am not by any means completely opposed to pain medication - I use it myself when really needed - but I always like to encourage people to do all of, or as many as possible of, the other things that we can do to manage fibromyalgia and other chronic pain conditions, and see if those things lower the need for medication.

I started out taking a lot of pain medication, and as I learned about what else I could do and started doing it, my need for pain medication went from daily to occasionally, so I wrote a whole post about all of the things a person can try to see if they will help.
I encourage you to read it and try some things. :)
 
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