What Now?

[Debbie71]

Hi, I am fairly new to this site and the first time that I have posted a new thread. I am just so confused on what direction to take in my search for relief from chronic pain. To start, I have fibromyalgia, degenerative disc disease, HTN, GERD and of course, depression. I am still working full time, but out on leave at the moment. I actually manage a doctors office...how ironic, huh. I live everyday in pain but I can't get anyone to understand that this is real. I see the doctor that I work with as my PCP. I see him at least every other week for some type of ailment. I have seen two rheumatologist and a psychiatrist in the last month. My family wanted me to see the psychiatrist because they said I was "just depressed" and needed to be on an anti depressant. I have actually been on one for awhile now. (Cymbalta) So, needless to say, it's not just depression. I had a discectomy with fusion at L5-S1 in 2004 and have started with back pain again. I just left the ortho's office and he said everthing looked good on my MRI. Again, I am not just making this up. I hurt!!! He did take me out of work for 3 weeks and ordered a LESI. My back is only one place that I hurt. My feet, legs, ankles, arms, wrist, fingers, neck...I think you get the picture. I have been tested for RA. Negative for that. My SED rate is always elevated. The last one was 33, rheumatoid factor was 15. So needless to say, the docs are treating me like it's all in my head. I also have extreme fatigue. Although, since I have been out of work for the last week, that has been minimized drastically. Mentally I feel better since I have been home, but the physical ailments still remain.
Is anyone else having trouble getting a doctor to listen to them? A lot of the doctors look at my age and say, "you are too young to be feeling like this." (I am 36) I am at my wits end and don't know where to turn!

[cindybear]

Hi and welcome,
After I've been fighting this pain for while, (it has been 7 long years for me ) but in the beginning,,I was 38, I was so tired from being in pain..and not having the right pain control..Suffering all the time..Most the time I was rocking in bed, holding my head in my hands, wishing for death..That was my first 6 months of my ordeal..Then my PCP started giving me something stronger than percocets...Which helped alot, but I was still in alot of pain..It wasn't until I got into pain management 18 months into my ailment that I got the help I needed..Thank God !!! cause by that time. I was wore out..Comepletely, totally depressed...Now I have 5 years of pain management under my belt..And it has been a godsend..Sure I'm not pain free, But I'm not rocking in bed no more,,I'm out of bed, on the computer some days,,,Some days I even smile,,,If you can get you a compassionate pain docter,,There is where I got my help,,I went to so many docters...Over 40 inthe past 7 years,,And the only one that I have kepted is of course my NS, my PCP, and my compassionate pain doc who is the best in the world, I will be praying you find one,,They are worth there weight in gold,,Hugs, Cindy

[whitfield]

Hi Debbie--Do you know what you want specifically? I know you want pain relief, and your doctor should be aware and have suggestions--If he/she does not give you something to help with your pain--find a new doctor! I do know that many doctors do not recognize fibromyalgia and if yours is one of those--again, find another doctor. When I was first diagnosed, all my Primary would give me was percocet--which was fine except I had to take pills every 4 hours and would go through them quickly--It was not until I was hospitalized with a very painful psuedo cyst that my primary turned my case over to specialists--One who put me on the duragesic patch--after my release, my primary finally prescribed the patch and I am on that to this day--Hope it does not have to come to that for you, but if your primary does not believe you--again, find another--Sure hope you get relief soon and sorry if I sound blunt--Roger

[Debbie71]

Thanks, Cindy and Roger for reading and making suggestions. Cindy, I think I will look into getting in with pain management. It really sounds like it has helped you. The stongest thing my docs will give me is Vicodin. It doesn't even phase the pain.
Roger, I am going to see another doc at 2:30 today. I just feel like I am doctor hopping. I don't want all of them to think I am just seeking narcotics. I actually hate taking pain meds!!! I will see how it goes today with this doctor and go from there. Thanks again for your responses.

[GardeniaGirl]

I have posted my story on here many times, but I will share it briefly with you -

it took me 4 rheumatologists until I found one who would do more than slap the fibro label on me.

that was almost 10 years ago.

There are other rheumatic diseases than rheumatoid arthritis. Good rheumatologists know this. They also know that they need to look at more than the numbers in the blood work.

I have a disease called Undifferentiated Connective Tissue Disorder. I have pain in all my joints, severe fatigue, headaches, GI problems, etc.

I was almost bedridden due to fatigue in 1998-2000.

My symptoms started gradually back in the 90's and have just gotten worse over time.

It wasn't until I got my good rheumie who put me on immunosuppressive medications like Enbrel, methotrexate, etc, that I started getting actual relief. The pain for me is inflammatory pain, so the opioids take the edge off, but I need drugs that reduce inflammation in order to get real relief.

I am in bad shape now because my disease keeps progressing... but I would be 100X worse without these medications.

I have had 5 different rheumatologists try to tell me this is fibro. My current rheumie who has treated me for 10 years disagrees (he also teaches rheumatology at a large medical school in my city, so he is always very up to date on research, etc). Fibro doesn't respond to immunosuppressants or anti-inflammatories.

I would encourage you to keep searching until you find someone who will really listen to what you are saying.

Here is an article about Undifferentiated Connective Tissue Disease:

http://www.emedicine.com/med/topic2937.htm

I was dismissed by the first three rheumatologists I saw....so I know this can happen to people. And I know there are variations of these diseases that can be as debilitating as the more distinct versions such as RA, lupus, etc.

Good luck!

[Boxerlover]

My first Rheumatologist told me to go buy a good pair of shoes.:mad: Trust me if that was all it would have taken, I'd have the best shoes in the world. Unfortunately you might have to go see a bunch of different docs until you find the right fit. It took me 3 rheumatologist, until I found my current and he's great! I also had to switch pulmonologists because my first was about as caring as a chair. I'm still not thrilled with my gp, but the location is convienient so I'm sticking with it for now. I travel over an hour to see my PM and boy is he worth it. I've learned not to settle with a doc who doesn't treat you right. Looking around is hard and a pain, but when you find that doc that "fits", it's worth all the hard work.

Good luck
Melissa

[Debbie71]

Well, I went to see another doc today. He is actually a GP that I have seen in the past but haven't used since I have been working for the doctor that I work with now. I told him I just feel that I need to see him instead of the doc that I work with. Sometimes I feel like everybody in the office is "all in my business" when I see my employer. The GP that I saw today was very compassionate about my issue with fibro and my back problems. He added Flexeril and Guafinisian to my fibro meds. Hopefully adding those to my meds, I will get some relief. As mentioned before, I am out of work for the next several weeks because of my back pain. I have just been off for one week and mentally I feel sooo much better...if only the pain would go away I would be 100%. I guess i will just keep wishing!

[Mark N]

Glad to hear you are feeling better and your 'new' GP has set you up with some new meds to try and control your pain. We all wish we could be 100% again but with CP that is never a possibility. Just controlling your pain at manageable levels is the best most of us can do.

[BrokenBladder]

I also have Fibro and tested positive for 17 out of the 18 tender points. I went through a couple of rheumys before I found the one that I'm with now. She's a doll.
You mentioned all of the places that you hurt and yes that sounds like Fibro as it loves to move around everywhere at once and drive you crazy with pain.
There is a free study out now by www.mlnstudy.com. All treatments and meds are free and I would suggest going to their website. I'm not eligble due to other things wrong with me, but you might qualify.

Also as GG said it could be something else. I personally feel like my DX is correct, but there's always the chance that you have been misdiagnosed. You need to feel comfortable with your rheumy in order to decide this on your own.

If you ever want to talk, please PM me and I will be happy to share with you.

[Diandra]

Hi Debbie,
Here is a link to a paper on Lyme Disease. There are tons of people who get the dx of FMS and when all along they had Lyme Disease. When you mention pain all over, that is what made me think it was possible you have Lyme Disease. Here is a link to a paper written by a doc who has treated LD for almost 3 decades. He is an excellent doctor. Read the checklist of symptoms page and compare it to yourself.

http://www.ilads.org/burrascano_0905.html

There is also a section on the tests to have and the labs that do the best tests. LD is not an easy thing to dx because the blood tests are not great and the dx is also a clinical one, meaning, just like FMS, the doc makes the dx based on your symptosms. I went for two years with every dx under the sun and FMS was one of them before it was found out I had LD.

I wish you the best Debbie in getting treatment for your pain and a the right dx. I hope the Flexeril helped. I had used it once and it was very helpful and I got some sleep.

Take care,
Diandra