Need help...urgent

Discussion in 'Fibromyalgia Main Forum' started by searoselilly, Nov 20, 2002.

  1. searoselilly

    searoselilly New Member

    HI everyone...this is my first time posting here. I really find this site very informitive. I was just dx by a rheum. with fibro..but have had it awhile and was on meds...ultram 100 mg 3 x a day, soma 2x a day and kolonipin at night for restless legs. All meds were perscribed by my primary physician. Well after my 2nd visit to the rheum. he want me off the soma and kolonipin and want me to take vioxx and pamelor...and he said if i had to i could take the ultram. The meds i was on was working for the most part and now i am in so much pain and no sleep. He say the soma is addicting..but i disagree and the same with the kolonpin. I need help finding a dr who deals with fibro patients in the antelope valley cailf. I do have hmo so switching is challenging but i am willing to pay out of my pocket for a dr who is willing to listen and work with me.
    Thank you and God bless...searose
  2. searoselilly

    searoselilly New Member

    HI everyone...this is my first time posting here. I really find this site very informitive. I was just dx by a rheum. with fibro..but have had it awhile and was on meds...ultram 100 mg 3 x a day, soma 2x a day and kolonipin at night for restless legs. All meds were perscribed by my primary physician. Well after my 2nd visit to the rheum. he want me off the soma and kolonipin and want me to take vioxx and pamelor...and he said if i had to i could take the ultram. The meds i was on was working for the most part and now i am in so much pain and no sleep. He say the soma is addicting..but i disagree and the same with the kolonpin. I need help finding a dr who deals with fibro patients in the antelope valley cailf. I do have hmo so switching is challenging but i am willing to pay out of my pocket for a dr who is willing to listen and work with me.
    Thank you and God bless...searose
  3. Shirl

    Shirl New Member

    Hi Searose, what a lovely name! You can go to the 'Home' page and they have a good doctor list on the left side of the board (Doctor Referral link). There is a list by state for good doctors. Many of the members here have been well please with those they found in the recommendation.

    Also we have many members in your state, so they will be here to share their experiences with you.


    We have many people who have good results with Klonoipin, can't imagine why he would change that. But doctors have a mind of their own and don't want to hear what we have to say! I have been there too.

    AGain, welcome to the group, and good luck with a doctor.


    Shalom, Shirl
  4. tamara!

    tamara! New Member

    to our board.

    That is a very pretty name.

    I too have found this board to be helpful. I've learned a lot here.

    It's nice to have you on our board.
    Welcome.

    TAMARA!
  5. Roxi

    Roxi New Member

    but, seriously, you should be listened to when you tell him the changes were wrong! I'd go back to the primary and tell him how he had helped you when the Rheumatologist didn't and get your old scripts back! You deserve the treatment that works! Good luck!
  6. Mikie

    Mikie Moderator

    The meds your PCP were giving you were working. Rheumies, for the most part, are the least effective docs we see. They are good for getting a diagnosis and that's about all.

    Vioxx is for inflammatory problems is has very limited effectiveness against our illnesses. The Klonopin for sleep was one of the best things your PCP gave you. Don't give it up. Ultram is far superior to Vioxx for our type of pain if you can tolerate it.

    Pamelor is an antidepressant and should not be used for sleep nor to treat pain. It is for severe depression not caused by other drugs, alcohol, or emotional loss (such as loss of health), according to "Worst Pills Best Pills." Talk to your PCP and tell him you want the meds he prescribed and not what the rheumy gave you.

    You will find as you navigate this illness that there are good docs who know what they are doing and docs who think they are good and know everything, but in reality, know very little. You will need to learn everything you can about your illness and become a partner with those docs you choose to see.

    My illnesses (FMS and CFS) were triggered by a mycoplasma infection 12 years ago. My PCP has me on Doxycycline for the chronic mycoplasma infection. My rheumy, who for the most part is useless, told me there is no such thing as chronic mycoplasma infection. He prescribes my Klonopin, so I see him every three months.

    I'm glad you found us. Good luck to you.

    Love, Mikie
  7. griswoldgirl

    griswoldgirl New Member

    i have been through so many that I have lost count over the past 8 or 9 years. I am in He** right now recovering from knee surgery, dealing with depression and I had the same thing happen with my pain management doc yesterday.(by the way a pain management doctor might be a good place for you to start. With RA-you should be able to get a referral to one.) anyway I mentioned they were testing me for MS right now and he changed my medication and took away my meds for breakthrough pain from oxycontin--which is the only lifesaver and the only thing that was getting me through PT from knee surgery I had 6 weeks ago.

    You can try going back to the other doctor if he did not send you to Rhematologist--my rheumy is scared of narcotics and muscle relaxers too---that is why I am with a pain doc now and the only reason I got the referral was from my neurosurgeon that did my cspine fusion last december to help with back pain from surgery--so I got lucky.

    I hope you find relief soon. have you tried hot baths, heat, ice or mediatation--these things help with the pain I have with my meds on board--I suffer from many ailments and have a lot of pain and one thing I have found is that all pain meds really do for me is cut the edge--I have not been pain free except after surgery LOL with the heavy duty drugs in years, but I can get it where I can function and the more I can move around the better I feel.

    i wish you well

    cathy
  8. pam_d

    pam_d New Member

    Welcome, searose!

    I can't imagine why in the world the same rheumy who diagnosed you with fibromyalgia (as opposed to a true inflammatory illness like lupus or rheumatoid arthritis) would recommend that you take Vioxx!! One of my constant symptoms with FM is that my extremities FEEL inflamed---very different from actually BEING inflamed, like with RA. A good rheumatologist should know this... Vioxx will not help.

    I've never taken the other drugs, but Mikie gave you good info. Also a good suggestion is to see a pain specialist now that you have the dx...

    Good luck to you Searose, & hope you find a caring doctor & some relief soon!

    Hugs,
    Pam
  9. Mikie

    Mikie Moderator

    Seeing a good pain specialist is well worth it. They are, for the most part, familiar with our type of pain and they are not afraid to prescribe the meds we need to cope.

    Love, Mikie
  10. karen2002

    karen2002 New Member

    Run Back to your Primary!
    He/she obviously had prescribed what you need--as it was working. The meds you were on were typical of those prescribed, and work for alot of FM patients.
    As for the Rhuemy....he is misinformed on addiction. I believe the number is somewhere around 1% of chronic pain patients become addicted to their meds.
    Chronic Pain demands management.
    Karen
  11. searoselilly

    searoselilly New Member

    Thank you all so much for your replies. I am going to be looking for dr that cares for fibro patients. I love my primary dr but is hesitent in prescribing the meds. Also i am searching for a supprot group in lancaster, ca...sunny..i didnt see it listed on the board. Also i went off the pamelor...i had bad side effects and went back to taking the kolonipin...i will have to see if my primary dr will refill. Anyways thank you all and thanks for the warm welcome......God Bless...searose
  12. Mikie

    Mikie Moderator

    I'm glad to hear you ditched the Pamelor and have gone back to the Klonopin. Klonopin is not addicting; you just have to wean off it if you ever decide to quit taking it. It is one of the most effective meds we have in our aresenal of drugs for what ails us. Good luck in your search for a doc. If it were me, I would keep the PCP and look for a pain specialist to augment the treatment your PCP is offering.

    Love, Mikie
  13. achy

    achy New Member

    I did the same routine wiht the rhumy's.
    My primary has me on Soma, Oxy, and Xanax. When I went to try an new rhumy (applying for SSD, they like rhumy's)
    he said no Soma, no Oxy & no Xanax. He put me on bextra & nerontin. I was so sick. He knew I had asthma...the first bextra I took put me into an severe attack. The neurontin made me so drunk I couldn't function. And they say Oxy is bad?
    Once you find what works for you you stick with it. Fire the rhumy & go to the PP...he's probably cheaper too! LOL
    Warm Fuzzies
    Achy
  14. timmissyh

    timmissyh New Member

    Searose,

    The way I found my rheumy was thru the local lupus support group! One (of the many) drs that I had seen had mentioned that I MIGHT have lupus, so I went searching on my own. The support group emailed me a list of drs in our area and said that this one was the one highly recommended and liked by all. So I contacted them and they were booked, I begged and begged to get an apptmt and threated to call every 5 minutes to see if they had a cancelation, so she agreed to squeeze me in. Boy am I glad that I was pushy, I mean persistant! My dr is wonderful, caring....I just love him! Good luck! and God Bless!
    Missyh
  15. Annette2

    Annette2 New Member

    I just want to say that not all rheumys are worthless. My rheumy diagnosed my FMS and takes care of it. She has prescribed muscle relaxers for me, and even a narcotic if and when I need it. She is very sensitive to my pain and helps me as much as she possibly can. Her colleague even had gone to my family doctor's office to teach the staff about FMS. I am just lucky, I guess. It's not good to generalize about any group of people, doctors or otherwise.
  16. searoselilly

    searoselilly New Member

    Thank you so much sunny.....i have called her office but she will not treat fms patients....she refers them out. I have her on my list of drs and they said they would refer me to her for a second opinion. So im still searching. Im hoping to stay near my home if i can because i work all day...but if i have to i will travel to the san fernando valley. Well the search is on...God bless you....searose
  17. lindasue

    lindasue New Member

    OH this is so long....I'm sorry all!!! I just REALLY need to get this out!!
    It AMAZES me that this very topic was one that I wanted to talk about here over the past few days...but haven't had a chance to get to it....I was referred to a rheumy by my primary phy. about a month ago. The first visit was not very pleasant, to say the least. He was harsh and a complete know it all! He was very upset that I took 2 Ultram 4 times a day (as needed for pain) which I need within 3 hours, but then I take half of a .5mg of klonopin for the breakthrough pain! I told him then that the Ultram at that dosage was the ONLY thing that helped! He babbled on for a bit and then took my into his exam room....he was even more harsh when he examined me...Of course he saw all my test results (and I've had them all) and said that everything looks find in those area's....so I most certainly have Fibro. Well I knew that....I've had it for almost a year...prior to that I came down with the "flu" a few years ago and never got well..Epstein Barr/CFIDS...But it went into remission for about 2 years until the first of this year. I told him that my EBV titer was, quote from my doctor, "off the board" "classic" and so on...This jerk told me he doesn't give much "credence" to EBV and chronic fatigue........However, I definitely have FIBRO. He took me off Zoloft, put me on Welbutrin in the mornings, and flexaril in the evening along with the klonopin to help me sleep. Nothing has really changed too much. Now, I went to him for my second (and last) visit and it took EVERYTHING I had to maintain control and not tell him to take his degree and shove it up his a**....He was as disgusting as before but this time he added a little more to his harshness...I told him that I had to go to the ER one Saturday night because the pain was sooo bad that I could hardly walk. WELL, he totally came unglued!! You would have thought I had just told him I killed someone!! He said, and again I quote "NO ONE WITH FIBROMYALGIA SHOULD EVER HAVE TO GO TO THE ER!!!" He actually yelled at me and told me that I have him and my other doctor and never should I do that again!!! I told him that it was on a Saturday....and I had talked with my other doctor and "He" was the one that told me to go to ER...he even called in advance to tell them what injections to give me.
    It gets better.....I started crying...not sobing, just crying and trying to tell him about how this pain how it has put my life to a screeching halt.....THEN he said "I would put you in a psychiatric hospital right now if I could....YOU need to see a psychiatrist!!!
    I started to leave but decided to see just what else this jerk had up his sleeve! He took me off 2 Ultram at a time and decided to replace one of them with tylenol #3's with codeine!! And upped the dosage of the Welbutrin to 300 mgs. a day.......and said he wants to see me again in two weeks.......NOT!!!! I sat down today and wrote a very direct letter to him about his behavior with me....that I will not allow anyone to speak to me and treat me in the manner that he has....I went through the entire visit in this letter and said that his harshness was on the verge of verbal abuse....not to mention mental!! And I FIRED his a^^ as my doctor! And now I will look for another Rhumey. And he or she had better never treat me like I am a second class citizen because I have this "unexplainable" disease! I've had it!!!! I know that many of you have been treated so poorly by your doctors and there is no excuse for this. WE may not be near "deaths door" with this...but by God we are sick and in pain most of the time and it has altered our lives beyond belief. And I'm really tired of the treatment some of us are getting! I don't really know what I shall do about this problem..but I do know I'll never step foot in "his" office again...except to pick up copies of all my medical records which I told him in the letter that I wanted them....
    I don't know.....are all rheumies just total A** holes!!!!!
    I too live in Southern Ca., in the San Gabriel Valley. I wish I had an answer for you searoselilly, but the only thing I can suggest is that you go BACK to your Primary Dr. and tell him/her the problem and see if they will either refer you to someone else....or see if you can find someone on your own.....That is exactly what I intend to do!
    I'm sorry I went on so long about my problem....I just need to get this out of me and suddenly there was the very topic!
    Thank you for posting this because it is so important that we are treated with the "respect" we deserve!! And treated with kindness and understanding!
    Much love and Blessing's to you all,
    Linda Sue

    [This Message was Edited on 12/02/2002]