Deena- Unfortunately your experience is very common for those of us in the "tribe of fibro". I think (know) that it's because most of us look healthy, and there are many who still believe it's all in our heads. Just remember this fact: In the early 1900's, multiple sclerosis was thought to be a psychiatric disorder. I think most doctors now would say it would be cruel and inhumane to tell a person with MS that it's all in their head and then treat them like some sort of junkie.
I agree with the people who suggest keeping the appointment with the rheumatologist, just so you can get an accurate diagnosis on the record . In the meantime, it is worth going back to the original doc and explaining just how this whole experience has made you feel. There is nothing in my experience more degrading and demoralizing than going to a doc for help that you really need, and being made to feel like some street-level junkie just looking for a fix (you can borrow that phrase if you like, it worked for me!). You are not looking to feel high, you are looking to feel functional, and there is nothing wrong with that. I would suggest that you make it clear to your doc that you are not just expecting him to give you pain medicine. Be an active particepant in your care, and ask about things such as physical therapy, TENS, trigger point injections, water therapy, and anything else you can think of that can help you get through until you see the rheum. Make it clear to your doc that if he is not willing or comfortable with helping you to develop a treatment plan, that you expect a referral to a pain management clinic. They may even be able to give you a diagnosis - mine did. Call your insurance company and find out the names of several that are covered, and then do some homework investigating them so you can suggest one or two to your doc. Take someone with you to the appointment to act as your advocate and to support you. If you have to, write out what you want to say ahead of time, and make him sit there and listen to you as you read it, or your advocate reads it for you. If he's not willing to at least do that, he isn't worth your time.
And remember that these people work for you. I got to the point where I told providers up front that if I got any indication that they were treating me like a drug seeker, they would be fired. I don't have a problem with my pain medication - I have a problem with my pain. I got tired of leaving doctor's offices in tears, feeling like the scum on the bottom of someone's shoe. I assure you that it will never happen again.
If you’re coming to Little Rock, I HIGHLY suggest seeing Dr. Columbus Brown IV. He is kind of shy but he will not leave you in pain. We tried several meds until we found something that worked for me. He NEVER judged me about my pain, he believed me and he believes in fibro and in treating its symptoms. You probably can get in sooner too.
Please call him, he was the first doctor I had that made me feel ok about talking about my pain. Also, fire those 2 jerk doctors, they obviously made the lowest grades in their medical school class.
If you need the names of some doctors in Little Rock, just contact me.
Please do not allow anyone, medical Doctor included, to mistreat you or dismiss your distress. This situation is only adding to your distress and will do you no good. Having a good relationship with your Doctor is one of the most important elements of the healing process.
Unfortunately there always seems to be a 6 month wait, but if this happens to be the Physician that will believe you, care for you and care about you, it is worth the wait. In the mean time do what you have to for care, if all else fails go to a clinic or an emergency facility.
I hope that you can get this straightened out. Please know that most of us have been through the wringer with the search for the right Doctor, diagnosis and care! We are all here for you!
Hi K, I've been right there in the same place. Being questioned about my "mental health" and all the stupid questions and remarks about how many medications I've been put on that didn't work. Tramadol is the most useless medication I've ever tried. It is NOT habit formning, which is why they use it for chronic pain for those it helps.
Anyway, I found my psychiatrist to be my best advocate in this whole ordeal, and my psychotherapist. I've signed releases for each of my dr.s related to the fibro drama to talk to my psych, because he knows me the best and knows how docs operate.
I also found a new primary physician who works in the clinic where all of my clients went, when I was working. I knew they had to deal with clients with developmental disabilities, and those clients have some of the weirdest symptoms. A good dr. knows not to assume and check everything with them, so I picked that clinic. I have a wonderful doc, young and still excited resolving or improving people's health and life.
I can't stress enough, call a crisis line if you have to, or hit an ER; I know you need relief from the pain. Sometimes all I can do is pray the ambian will let me sleep through part of the night for some relief. I called a suicide hotline last week in fact because I couldn't even think of a reason to live. I couldn't think at all, the pain was so bad for so many days I couldn't think straight.
This week is much better. Glad I'm still here. I'll pray for you finding the care you need.
i have fibro to the worst days are when iam driving long distances in my car and it takes me 3-4 weeks to get the fibro to calm
down since i have been out of work since 9/13/2010 it has gitten worst stress and no prospect of a job either part time or full time my nuro doctor does not beleave in phchriatrist, pain clinics,or rheumatogist he can get the fibro to go full blow with 21 point nerve / tender point for females both i allways fail the 21 point test and am in more pain then i was before i went to the nuro doctor i am on tyenal 3 with codeine for pain since the d e a took darvecett off the market last year for the ones the overdose and use it in waus not intended for pain sorry no real good news since i dont have health insurance now it will be quite awhile before i can go back to the nuro ,hope you can get some relief from yours ddw
inform me i have tryed for s s i and cant get it how do you get on short -term disabilty does the doc have all the forms that are required for this ddw
have not seen a rheumy no arthritis yet no job no insurance cant afford cobra for me and wife 1,900.00 a month just trying to stay afloat with bill;s not any action on job front in indpls ,in in my field and cant afford to go back to school to get any more training still paying on student loans for auto training i had filled all my scripts before i was let go from last job i guess hind sight something was going to happen to my job
wish i could give you more advise but i am in pain all the time tryrd to work outside yesterday all day fall cleanup and last of outside projects had a very ruff night slept on heating pad on warm to get mussles to relax meds did not even touch the pain by 9.00 crying my self to sleep finally 4.00 am got to sleep have something that i take for miranes that just knocks you out and got some sleep
please send me the names of the doctors in pittsbough at the pain clinic i have had fibro for 9 years now i get some relief and something happens that i loose my health insurance.
Hello all. Thanks for all the suggestions and kind words. I called my old dr to see what they would say. I told the nurse that i have a rheumatology appt Jan 7 and i cant wait that long. I asked if i could see a pain dr in the meantime or could he suggest something to help. She called back and said he would send me to a pain dr. It was actually one I used to see when I was first diagnosed and loved. He was very caring. Well, I call the pain dr’s office today and find out he retired!! Seriously?! I contacted my doctor’s office so I could let the nurse know. They said they would give her the msg Monday. I was under the impression she was going to make that appt for me today, so that kind of ticked me off. Just a pet peeve of mine with drs offices. I will be following up on this. Everything seems so hard.
I ordered a new pillow overnight shipping today…buckwheat hull. Anyone have one? I ended up arguing with my husband to order it. He thinks I’m ridiculous for trying to find a decent pillow. He’s a physical therapist, but has no concept of my pain. I have no advocate to speak for me with these doctors. I read about some of you calling the suicide hotline in the past. I feel like that too. I can’t imagine living like this forever with no end in sight and no one around me caring. I just found out my sister in law is pregnant. I was immediately struck with a fear that I won’t be around to see the baby. I’m 36 and feel like I’m 86. My husband thinks I should be able to clean the house, wash the clothes, cook, do it all. It’s my job you know. I feel like running away sometimes. I just keep telling myself this flare will get better, they always do, but its been 3 months of constant horrific pain and migraines. I know my rheumatologist will be a good doctor, I just have to hang on until jan. I can see a little light creeping in. I hope my dr can get me in with a pain dr in the meantime.
buck wheat helped me when i busted my jaw and blew out 4 disc in my neck migranes that lasted 24 hrs ect ect that pillow helped me and ice and heat buck wheat things i still use
God bless you
try and find quiet time and cover eyes and cool wrap under the neck, and one pillow roll under legs and get calm and quiet
Try to get to a pain clinic. Some will give stronger meds some like mine allow me one vicoden a day. Reason is the pain meds make Fibro worse. My pcp is understanding as zanax helps. Yes it is habit forming but I have been on it 20 some years and never took more than percribed …I did go to a different pain clinic when my pain had me suicidal and they were more compassionate. I take zanaflex a muscle relaxor that helps. I just would never recommend ambience as my experience was sleep walking driving and no better restoring sleep with it anyway. I have had many surgery at this point. zip have had some remission but the fatigue is always the worse.
I heard back from my doctor regarding referring sending me to a pain dr to help until I can see the rheum in jan. NO. he said a pain dr would" not be helpful for my condition. They would just give me patches and injections." The nurse said they would not try to get me worked in with the rheum…that was my slot, they don’t do that. I asked what am I to do?? She said she would “see if he had any other ideas” and call back. That was 2 days ago. My husband is friends with my dr, like I said, and he spoke to him Mon about the pain I am in. He told my husband, “I know she is in pain.” Really? So where is the compassion? I don’t understand the logic.
I called a pain clinic in town on my own and explained my situation. I have an appt Tues! I know what I need. I was almost suicidal, but now I have a little hope.
Your extremely painful account made me boil over with rage at Drs who just don’t do their jobs. And this business of typing your concerns and deep pain with almost no human contact is technology run seriously amuck (sp?) . Even worse - but possibly the root of the techno-exam - is being lumped into the impersonalized and generalized category of “clients” rather than being a specific, and very particular of “patient”.
OK, Deena, I’ve gotten one of my pet peeves off my mind and do have a suggestion for you: instead of a PCP, find a pain management specialist, or at least a rheumatologist. Either of the specialties will have a better grasp of the desperate pain you contend with and know more about the available treatment methods for FMS.
DO, keep seeing your psychiatrist - sounds like she’s got it together for you - as this support is vital in living with Fibro.
Most of all, read everything you can - this site is great for information and solidarity.
I have a pain dr—I haven’t seen him yet because after the appt was made my pain got better. They said they could work me in when the pain got bad again. I talked to my psychiatrist, who I trust. She had set me up with the new dr that I didn’t click with. I asked her if the PCP was just quiet or what. She said she was reserved until you get to know her. I have decided to try her again in the future, esp since my psychiatrist said she would send her a note letting her know I’m not a drug seeker and am a good pt. I have essentially fired my old dr. He would not help me at all, though he told my husband, who is his friend, he knew I was in pain.