New Rheumatologist Today Don't Know what to think

Discussion in 'Fibromyalgia Main Forum' started by kch64, Jan 18, 2006.

  1. kch64

    kch64 New Member

    Well, I went to a new doctor today. He confirmed my diagnosis of CFS/FM and then he said "I don't know why you've had to miss so much work".

    AM I stupid or something? I'm not as bad as many are, but I've had some horrible days last year.

    Then he gave me a prescription for Ultracet? and said I need to start exercising slowly and start losing weight.

    He said that FM is a neurological disease where our pain receptors over react. Now, can you tell me why, if I have this and all the other symptoms that go along with it, would I not have days and sometimes weeks, when I'm too sick to work.

    I don't know if I'm going back or not. I'm going to try to exercise more and slowly get off of caffeine (he recommended it). I'm not too sure of the pain med. I don't handle many meds well, but he said I can break the pills or take them however I need them as long as I don't go over the max.

    Whats the opinion of the good members on this board? Can you tell me if I've missed something? I have CFS/FM, to include irritable bowel and interstitial cystitis.

    I'm of the opinion if they've never suffered with it, then they just don't understand the fatigue and pain.

    Am I wrong?
  2. fivesue

    fivesue New Member

    The doctor, that is! Hope you understand that! He has all the right things to say but he has no clue as to the effects of the diseases on people's bodies...pain, fatigue, and the other things.

    Don't know if I'd go back, but acutally, he did say at least acknowledge the diseases and gave you something for pain. My rheumy said that there was nothing he could do for FM, period. That I should just do what felt good....go for a walk on a nice day, nothing that stressed me. Can you imagine hearing that la-la suggestion?

    So, I don't know the answer, but I think I would check out the meds to see if they help you. I take pain meds and I would be very incapable of doing what I do without them. I am starting to exercise again, but without pain meds, I couldn't. So...maybe I will be able to cut them out or down IF exercise is the answer.

    Take care...

    Sure hope you continue to go with you opinion...the doc just hasn't a clue.

  3. Fibrotears

    Fibrotears New Member

    is a very strong pain medication. It is an opiod, therefor it is a morphine derivative. It contains Tramadol and paracetomol and is very safe to use.

    I used it for 3 years and it really helps with the FM pain. Unfortunately I got allergic to paracetamol and had to stop using it. I'm know using Tramal Slow Release wich only contain Tramadol.

    Hope it helps.

  4. kch64

    kch64 New Member

    thanks Sue. I appreciate your help. I will try the meds and do what he said to see if it helps me.

    The doctor that told you to "go for a walk" doensn't get it either.

    *** Is there anyone in Northern Virginia that has a good, supportive doctor? I need one. Just so I don't lose my job.***

    Dr. Rothenberg is the one I went to today. He's o.k., but just don't know if he's going to be supportive of me. I need it right now.

    thanks everyone.
    [This Message was Edited on 01/18/2006]
    [This Message was Edited on 01/18/2006]
  5. daylilyfan

    daylilyfan New Member

    I've used Ultram... I think the ultracet has tylenol added... my rheumy said I could add tylenol if I wanted for an extra boost, but she doesn't prescribe ultracet because the long term use of tylenol is bad for the liver.

    She told me it works better if you use it consistently, over a week or more.....

    I've tried it at the max dose for up to a month at a time. I didn't do a thing for me.

    I've heard people mention that it helps them - but for me it didn't. With or without adding tylenol. Wish it did... I have the 90 day mail-in supply just sitting in the cupboard.

    If that's all the Doc did and he's a Rheumy, I think I would look for another one, or try going to a physiatrist.
    [This Message was Edited on 01/18/2006]
  6. rosemarie

    rosemarie Member

    I looked it up on a web site adn it is a NON- Narcotic pain medicataion. For some people it works just great and others like me it does NOTHING> I had to finally see a Pain Magement Doctor for my pain. I have other things than fibro and I am on some very strong naroctics and I hae to see my doctor every month to review if the meds are helping or not.

    I see him once a month but we always talk about the meds and if they work, if I don't like the feeling I get from them we discuss it and he will change it.

    I have strange reactions to some medications so I have to watch it. I am the one person who if there is a starnge abnormla reaction to it I will be the one who gets it. I hae not taked the Ultracet but Ultram and it did nothing at all to help my pain but it did set off my panic attackes so I stopped taking it and will not ever take it again,it didn't work anyway so what was the point of taking it. See if you and your doctor can find a med that you can take that will help your pain. I don't know how your doctor is but I hope that he can find a midicataiton that will help you with the pain your in.

  7. kch64

    kch64 New Member

  8. kch64

    kch64 New Member

    No Kat-e You didn't say anything offensive.

    My husband tells me at times that I need to "bite the bullet"

    I guess I just need to keep trudging along.

    I felt very good for the past two weeks, and on Tuesday, I started feeling the flare symptoms again. Yes my irritable bowel has caused me some issues. I was just diagnosed with that last year also.

    I read an article that said most people with FM have irritable bowel.

    I've been using probiotics for the last several weeks, and I think they are helping me.

    Thanks for your input.

  9. getfitat40

    getfitat40 New Member


    A rheumatolgist told you that FMS is a neurologic disease? That makes no sense to me since he is not a neurolgist... It is amazing how many docs are still clueless. Find a new doctor that really understands FMS/CFS and I know it is hard. It has taken me over 10 years to find the right doctor.

    But I did...and I found him by Googling "rheumatologist Chicago" and I found one of the best doctors in the country and in Chicago - awards to prove it. I have been under his care for just about 3 months and I feel so much better. I hope you can find the right doc and you will if you don't give up - it is hard but hang in there - Nancy
  10. jaltair

    jaltair New Member

    If your insurance, etc., allows for you to choose, I'd find another rheumy.

    Contrar to what yours told you, mine told me that maybe I needed to consider "slowing down" and not trying to do so much.

    It's important to have a rheumy with FMS or CFS etc on their records just in case you need the documentation (hopefully you never will - but, one never knows).

    I take Ultracet and it seems to work for my pain. However, I'm on a campaign of sorts to get off all my meds, including the one for pain. I believe that they make me more tired, and I can't be tired as I still work full-time.

    My internist did write a note for me to protect my FMLA. The note stated that due to my physical condition, I may need to take time off. I'll have to look that note up and see what she specifically wrote. Others might be able to have their docters use similar language.

    Best wishes, Jeannette
  11. kch64

    kch64 New Member

  12. idiotsinc

    idiotsinc New Member

    ... doesn't mean it's all in our heads, though in a sense, that's right. More and more health and research orgs are saying it's caused by an imbalance in the neurotransmiters (sp? can't spell this late in the day) in the brain, not something in the muscle tissues or ligments. Mainly it seems to be the primal "fight or flight response" is stuck "on" all the time. Everything else are symptoms. Lots of info from research to back this up. You need to start acknowledging that this is probably true before you'll find any relief. Seems to upset a lot are FMS sufferers but that doesn't make it untrue.
  13. lolee

    lolee New Member

    From the doctor that is . . . .

    First off, I'm so sorry you are going through this, like on top of everything else the people we are supposed to be able to turn to for answers don't know their burrow from a borough.

    The Ultram (Ultracet is just Ultram with Tylenol) when taken how my PCP said (i.e: 50mg 4xday) did nothing but make me sick. But after reading the dosing instructions on line and some input from this board I tried taking 100mg and 4 extra strength Tylenols, I must say within about 30 minutes my pain was reduced quite a bit and I did not get that loopy feeling in my head. I took Vicodin for quite some time and used the Ultrams when I was either running low on Vic's or out of Vic's.

    If I was in your shoes I would at least stick around with him because he is at least giving you something. My biggest help and clarifications came from a pain specialist I just started seeing.

    Befor seeing the pain guy I was only being seen by my PCP, the rhuemy was a quack, in my opinion BUT he did give the referral to this heaven sent pain doc. Your rhuemy sounds a lot like my PCP, a little knowledge can be a scary thing, ya'know? Well, I printed out articles for him to read and brought along two sets (1 for him and 1 for me) to my next appointment. After kissing his A$$, he was at least willing to read them. I brought one on common meds used in treating FM which he actually used to pull some ideas from.

    I know it's so hard. Well, actually I just know what I went through, and sometimes I feel so quilty because I haven't had to go through years and years of torture like must people here have.

    Well, sorry it's so long, guess I needed to post too!!! LOL

    Smiles, hugs and prayers,

  14. jake123

    jake123 New Member

    My neurologist also says that FM is a brain chemical related thing. Different things can set it off, too bright lights, too loud noises, arguments, smells, fatigue, low blood sugar, just about anything. For me it usually means a migraine and then the muscle aches and pain every where.
    I have some spots that improve greatly with pain meds, my right hip and right knee and right foot. I have scoliosis with a curve on my right side. My hands are my most miserable pain.
    I went to a gambling casino out of town this weekend and had alot of fun until the transmission went kapooey on husband's truck ($2400)and I have been extremely tired ever since.
    My neurologist does believe I'm in pain and he has found the key to the headaches and is working on my body pain.
  15. Sue50

    Sue50 New Member

    I couldn't read the entire thread but I thought I would throw in my opinion. That rhumy does not have fibro and doesn't know what exercise like walking can do to you.
    For some of us it can send us into a big flare. I was feeling so much better last month and I started to exercise and I have been in a major flare for the past 3 weeks. I had to avoid all activity and now for the first time today I am able to do a little reading on this board. My Dr. has told me if I am going to try and exercise to do it in the water.
  16. kch64

    kch64 New Member

    From others that this guy is "really good" and they like him so much, but he reminded me of the nutty professor.

    He did do the trigger point test and said I had it. I wasn't aching too bad until I got home later that night, then all heck broke loose and I was aching all over.

    I have to admit, I'm a bit scared of the pain medication and haven't taken it yet. I've never taken any pain medicine with opiates in it, even if its non-narcotic.

    I was just stumped by his comment about my missing work and he didn't know why.

    Maybe he was just stupid that day (LOL). I got so very upset that evening. I was crying and fussing about how noone wants to help you unless you line their pockets with gold.

    Isn't it the truth?

    I will try the ultracet, but it will be very slowly and bit-by-bit.

    I will be the first one to say that I am fat, but I became fatter after the symptoms of this illness started. I was too fatigued to move for a long time. I tried to exercise, but it didn't do any good for me.

    I did get a mixed message from this doc. I may go back one more time, but I doubt it.

    Education is a wonderful thing, but compassion is necessary also. I think because when I saw him, I was having a relatively good day, he thought maybe I was like that all the time. but I told him, that there were really bad days also.

    [This Message was Edited on 01/20/2006]
    [This Message was Edited on 01/20/2006]
  17. elsa

    elsa New Member

    Is the main ingredient in ultracet. The other is tylenol. I was rx'ed this one first but switched to ultram (tramadol) as I didn't want any tylenol in my system.

    Tramadol is an SYNTHETIC OPIATE DERIVATIVE ... it does build on itself in that you will have continued pain relief if you take it regularly instead of hit or miss.

    Part of the process of making it is the removal of the "feel good" compound that many heroin addicts love ... the numb to the world, euphoric feeling. So, it is safe in that regard.

    It takes about an hour to feel it's effects and hits full concentration after about two hours. If you maintain a dosing schedule it will treat moderate to moderately severe pain for about 7-8hours. (You still need to take it every 4-6 hours to get this effect.)

    For some reason it is more effective for women then it is for men and if you combine an anti-imflammatory like ibuprofen to your pain protocol, it will enhance tramadol's effectiveness.

    Like so many other drugs, it really helps alot of us, but does nothing for others. We really are in a hit or miss boat when it comes to treatments.

    I have read in many studies and heard from many "experts" in the field that they are leaning towards fibro being a neuroendocrine disorder. So your doc wasn't too far off on that one.

    He was pretty off about the exercise though ... a large number of us do not spike growth hormone right after exercise like normal people do. No growth hormone means not able to repair the muscle tears that occurred during exercise. After a while, it starts to really hurt ... as we all know. Fix the hormones and then start the exercise program.

    Hope this helps you ,

  18. bettydroop

    bettydroop New Member

    TO A NEW ONE> I think that little voice telling you that you dont think you like him -should be listened to. Like someone else said.. dont waste ANY more time! GOOD LUCK TO YOU~~~~~~~
  19. kch64

    kch64 New Member

    You know, you're absolutely right. I need to listen to that voice more often.

    Thank you.
  20. rosemarie

    rosemarie Member

    Ultram was given to me by my doctor years ago when I was having bad headaches and he didn't want me to take Tylonel #3's so he prescribed for me ultram telling me that is has no narcotic in it, and it is non addictive , When I was given it I was told that it works better than a narcotic but it didn't contain any narcotic meds that was why I was given it as this doctor thought i was taking to many of the T3's .

    I would have a script of 20 pills that said take 1-4 every 4 hours as needed. When I had headaches they would not just go away with 1 pill and they some times took days for it to break and stop. And ultram was like taking nothing, a jelly bean would hvae helped memore in easing my pain than it did. But from what I understoond it was a NON narcotic pain medicataiton.

    I was told to take the ultram at the very first sign of pain, like when you think you have a headache you are to take it then and your pain is not to get worse it will just go away or so I was told.

    But with Fibro when is the first sign of pain? for me pain is always with me and it builds up when I move and do things but it is always more than just a thought of I might be having pain. sorry for the lecture I really don't mean it to be or sound that way , It just came out that way. If it works for you then great. But for me it was not the best thing I have taken and it only gave me panic attacks.

    I have not taken it for years and there is no way I will ever take it again as it did nothing but make me feel worse and panic and I was still in pain and up a creek .

    I hope that this med. works for some people because it didn't work at all for me.

    I would try to find another doctor who was more receptive about the pain your in and is more understanding with fibro and it 's treatmetn. I have more things than fibro so I am on stonger medicatation. But It works for me. I hope that you will be able to find the help you need and a good doctor . It is hard to do because it is getting hard to find pain doctors as they are having trouble with people thinking that all they do is push pills and they don't do that.

    Good wishes to you and I am hoping that you will find the right doctor for you.

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