Pain...it seems to be my life

Sorry I just gotta vent here, I am in so much pain sometimes if I don't try to play a mind game, I will go insane.


Got diag with Fibro 2 years ago May, lots of pain with that, major player is my neck which will give a nasty head pain. Then last spring I got diag with Lyme, had a Picc put in, after 7 weeks it had to come out due to a blood clot. Okay so felt like the Lyme was gone and just left with regular fibro. Okay so was dealing with it taking tramadol, and percocet 10/325's for break thru then it was perc just about every day by the time I got home from work with the pain. So then fast forward to about a month or so ago...pain just shot up out of no where....my gosh it is so intense. And I started feeling like Lyme may be back, when to my primary she ran a few basic tests and said no Lyme...still could be that too not sure gotta go back to a LLD for that, now in addition to all the pain all over my throbb'n body, my feet and hands hurt so bad I want to cry, doc mentioned elevated inflamation level, not sure what that means, when to a pain mgmt doc who told me I should do bio-feedback and come off pain meds, I sat there and cryed right in his office, I'm not whimpy, but I asked him how am I to work and function? He said he thinks the perc's are making my pain worse....fast forward to now, I am taking tramadol and neurotin at night with skalxton or how ever its spelled during the day. Waiting for my rheumy appt next week, she had sorta blew me off to the pain mgmt guy but he didn't do anything for me. I need her to run some test, as I may have some type of arthritis now in addition to the fibo and lyme. My back hurts pretty bad too, but x-rays never came back saying anything was wrong with my disk's or anything. I know I may not have problems like some on this site, but my pain is real and it hurts me too. I feel so darn lost I'm in SE PA and I was so shocked and hurt that the pain mgmt doc did not do anything for me. I fight off the thought daily of going to the ER because I feel like I can't afford to pay another ER bill, have so many now from migranes during the Lyme treatment. Sorry its so long I'm just frustrated and hurting.

Hopegirl, straydog is right...you have every right to vent!! I'm so sorry you're in so much pain! Your PM doc sounds clueless; I do hope you can find a better one! You're right to ask your rheumy to run tests for other conditions, because Lyme is notorious for triggering not only fibro but autoimmune diseases like lupus and rheumatoid arthritis as well.

Did you just have the one 7-week shot on IV abx for Lyme? Because if you have late stage Lyme (as I do) you will likely need many, many months of abx therapy to actually get the Lyme under control. The nasty little critters tend to go into cyst form, or form biofilms to protect themselves from the abx, and it can take several different abx over a long period of time to really kick their collective butts and put the Lyme into remission so that your own immune system can take over.

My SIL had Lyme 10 years ago; she underwent 18 months of abx. I'm on Doxy and Zithromax at the moment, but am told I will need IV soon. I was also told it would be a "long haul"....months if not years of treatment.

In any case, my heart goes out to you and I'm praying that you will find some doctors to help you find relief!
(((((((hugs))))))))
JoAnn

Hopegirl,
You've been given some thoughtful advice already, but I want to comment on the pain psychologist since I've got some professional background in that area (but I'm not giving you medical advice, just sharing some thoughts). A pain psychologist or psychotherapist that's worth his/her salt should add to the MIX of pain management strategies to help you find what works best for you. Unless it can be shown by your PM doc that your pain is only due to rebound effects of medications (this can happen, but I don't think it is in your case) then biofeedback, meditation, relaxation, Cognitive Behavioral Therapy and other approaches should be tools added to your tool kit to help manage the pain, not to replace pain meds. In some cases using these approaches may mean you find you need less pain medication, but sometimes not. Sometimes they just help you get a little more quality out of life.

So if I were you I'd find another therapist who has experience with pain, but also understands that biofeedback and other psychological tools don't alleviate most types of chronic pain, they just help manage it.

Hope this helps a bit.

PaLady

Thank You all so much for your input. Today was rough, tonight is proving to be just as bad. To answer a few questions:
I was just really beside myself when I got the blood clot. I decided that I did not want to go back to the Lyme doctor and I thought I was cured of Lyme. (So I thought) After I stopped my IV rocephin I honestly did feel better for a short while. But then when the pain came back, I just chalked it up to having Fibro and accepted it. My Rheumy, well she I don't know I have had her for almost 2 years now. She tried a few different things for me, cymbalta, but that did nothing for me. Lyrica was very helpful for about 1 year, but then I started needing my dosage increased and then I started swelling up so I had to come off of that. She gave me a lower dose of percocets at first, and I still had pain and also the percocets keep me awake, so she tried Opana, I didn't get any relief from that, so she increased the percocets to 10/325. They were working okay and she allowed me 2 a day. But I was taking tramadol during the day and the percocet was break-thru meds but I started needing to take them more often. So around the start of Feb I noticed my pain seemed to be increasing more and more, finally I decided to call my rheumy and be honest with her and tell her what was going on. She seemed to have an attitude with me and said, I've tried all the routes with you that I can think of, I need you to see a pain management doctor at this point. I said ok, because at this point, I really did not have any faith left in her, I mean she always implied that I have the worst case of Fibro that she has had to deal with. But, the origional pain management doctor that she referred me to did not take my insurance, so I had to call my primary doctor who referred me to this other PM.
So I have since ran out of the percocets about 10 days ago. For the last month and a half this pain has started increasing in my feet and fingers and now my neck and shoulders. It feels very different that the fibro ache, this is more like throbbing pain.
I do think that she could work with me a little more, but I guess she doesn't want to deal with me. I've made an appointment for a new rheumy, but they can't see me until May, so I have to go to my current rheumy on Thursday. I hope she will run tests to see what is going on. At the very least, I hope she gives me a script for the percocets because I am having trouble functioning at this point. I honestly don't think I have the worst case of Fibro, but I do think I have something else going on in addition.

I really had no idea how difficult it can be when you body is in so much pain to function, just trying to get myself together to seek a different route to figure out what doctors to see can be difficult. I'm also exhausted, just worn out.

I would like to thank you all individually, but right now, I just can't this is it for me tonight, maybe tomorrow or Sunday I can come back thank you all again so much for the support. It does help to know that others know where you are coming from.

hopegirl
Have you been keeping a journal of your pain? you might want to try doing that, when you have your pain, what you are doing, how intense it is, ( pain level 1 to 10 scale) That way you have something to show your Doctor what is happening with you and your pain. You should not have to suffer like that, just keep on them, and if you are not getting adequate treatment then try finding a doctor that will treat you properly! You know lyme disease can be a long term on going problem so that might be some of what is going on still. Anyway YOU know we are all here to support you, and lend you our ears, so vent away! We might not be able to make your pain go away, but misery loves company, so when you come here. at least you are not alone!
I do wish you well!

White Beard