seems to be my life

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Veteran Member

Date Joined May 2008
Total Posts : 704
   Posted 3/26/2010 10:38 AM (GMT -6)   
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 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 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.
Taking it one day at a time.... 

Forum Moderator

Date Joined Feb 2003
Total Posts : 13362
   Posted 3/26/2010 2:13 PM (GMT -6)   
Hopegirl vent away, you have every right to. I am very sorry you are in the mess you are in right now and I hope things will turn around for you.
First off kick that pain mgt dr to the curb and find one that will take you serious. Many times we do have to advocate for our own care regardless of what the problem is. This is not uncommon at all. It is gertting harder and harder to find decent PM drs granted but they are out there we just have to search for them. If you have access to your health ins online look and see what PM drs are covered, then call and find out what it takes to get in to one. Be aware there are two types of PM drs, one will do procedures and injections only no meds, the other kind will do this plus rx meds to the patient. So be sure to ask if in addition to procedures does the dr rx medication.
You do deserve quality of life and not to be kicked around by some idiot dr that thinks he knows it all. They don't know it all. Remember they work for you, just don't let this incident tear you down thinking there is nothing left, you are just starting over and that is ok. I can tell you first hand I have fired many drs and I have no qualms in doing so either. They put their shoes on just like me one shoe at a time.
Fibro can and will cause incredible disabling pain and I do know Lymes can do the very same thing. None of this is in your head, it is your body's way of telling you things are wrong.
Take care and get busy finding you some help, you deserve it.

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.

Veteran Member

Date Joined Sep 2009
Total Posts : 1176
   Posted 3/26/2010 2:52 PM (GMT -6)   
Hopegirl, straydog is 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!
Lyme Disease, Babesiosis, Ehrlichiosis, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, Doxycycline, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Post Edited (nasalady) : 3/26/2010 2:02:46 PM (GMT-6)

Regular Member

Date Joined Mar 2010
Total Posts : 73
   Posted 3/26/2010 3:08 PM (GMT -6)   
hi hopegirl
its so tough finding meds that work for you. did the percocet ever work? have you been on ansaids for inflammation?
i never tried biofeedback. meditation sometimes helps me.
youd think if you keep trying you will find a combination that will work.
i take diclofinac, tylenol and dilaudid. i've tried a dozen others with no relief. there has to be a good pm doc out there that can put a good list of painkillers taylored to you. keep up you quest for relief....pete

Veteran Member

Date Joined Nov 2007
Total Posts : 6795
   Posted 3/26/2010 3:20 PM (GMT -6)   
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.


Veteran Member

Date Joined Oct 2008
Total Posts : 2022
   Posted 3/26/2010 3:57 PM (GMT -6)   
Dear Hopegirl, Gosh you are having a tough time and if I lived closer to you, I would come over and help you. How old are you and where do you live, what is your occupation? YOu do need a good dr. to get you on the right medications. Have you tried any forms of treatment?
I wish I could help you, but what I can do is lend you my shoulder for you to lean on, ears so you can vent and pour your heart out and I can pray for you!!! Hang in there!!! Your motto is the one I used every day, "one day at a time", and if that is too much then take it one hour at a time!!!

Keep the faith girlfriend.
 Chronic, severe and continuous bilateral temporal headaches since April 2000.
 Poor prognosis, seen thousands of doctors, been on dozens of meds and tried all forms of treatment with no success.
 Currently Feb 2010: cycles of IV Ketamine infusion via a PICC line and pump at home with some success.
 Meds: oxycodone for breakthrough, cymbalta, vitamin D, B12, magnesium, omega 3, melatonin
 Profession: Part time registered nurse on Long term disability and applying for permanent disability thru CPP
 52 yrs old, female, married, two boys 19 & 21, live in Ottawa, Ontario, Canada

Veteran Member

Date Joined May 2008
Total Posts : 704
   Posted 3/26/2010 9:04 PM (GMT -6)   
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.
Taking it one day at a time.... 

Forum Moderator

Date Joined Feb 2003
Total Posts : 13362
   Posted 3/28/2010 7:10 AM (GMT -6)   
Hopegirl I hope things are calming down for you. I would not be too hopeful on the rheumy helping you out since she has said you need to see a PM dr. Most drs unless they are PM drs do not want to write out scripts for pain meds except for a short time, usually 7-10 days. Drs don't want to take the time to sort out whether a pateint is real and needs medication or if it is a drug seeker, they just do not want to get caught up in that, sometimes I see their point.

I would still opt for a new PM dr and he can send you out for any test such as MRI's to see if anything further is going on. It just seems at times when the pain has escalated and out of control nothing seems right no matter what we do. Just don't give up we have to keep plugging away until we find the right drs that are willing to help. You may aslo want to consider getting back to a dr for the Lymes. My sister has Lymes and from what I understand she has flare-ups with it.

Take care.

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.

White Beard
Forum Moderator

Date Joined Feb 2009
Total Posts : 3602
   Posted 3/28/2010 12:31 PM (GMT -6)   
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

Retired Mom
Veteran Member

Date Joined Feb 2010
Total Posts : 1753
   Posted 3/29/2010 4:12 PM (GMT -6)   
Hello Hopegirl,

I so understand the fibro and the flares. I also understand having Dr's act like you are insane when you say you hurt and don't respond to what they feel are the correct meds. I just don't have "normal" medication reactions. It took a while to find a Dr willing to listen and to understand without that horrible attitude. There is hope and there are doctors out there who understand. Please don't ever "down" your last Dr though because it will put anybody new on edge with you. Perhaps just tell them you have tried everything the other Dr. had to offer and are looking for a fresh perspective.

Your history and symptoms are so unique that I wonder if you may benefit from a comprehensive evaluation (kind of like Mayo). I haven't been there myself, but I understand they work as a team to find out exactly what the problems are and to find treatments that work. If my new treatments don't work, I'm going to go myself even if it takes every dime we have.

The thing with your hands sounds exactly like what mine are doing right now. I have fibro, but I have never heard of anybody having the hand problems from fibro. The "best" Dr I have thinks it is some type of arthritis and I have also been referred to a reumy, but it will be at least June/July before I can get in.

I wish you all the best!
Formerly PrayingForRealRelief...

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