Back from seeing Rheumatologist, need your opinion please.

Discussion in 'Fibromyalgia Main Forum' started by Bronagh, Aug 22, 2005.

  1. Bronagh

    Bronagh New Member

    Hi everyone

    I'd really appreciate your opinions please on what i have to tell you.

    I had my first visite yesterday with a Rheumatologist, i can't believe that after living with pain for almost 30 i am now seeing one, i had to PUSH MY DR to send me, her opinion was that she couldn't see where he could help me!!!!!My Dr and me is a long story, i'm a patient of hers just 6 years, the older Dr at the surgery has semi retired, i was his patient for 30 years, as i've said the story is too long to write about it:)

    I'll try my best to keep this as short as possible.

    I was diagnosed by my semi retired Dr with Fibro about 28 years ago, he tried all sorts of meds without success, there wasn't a lot know about it back then well at least not over here where i live.

    I had to keep on working through the years but it has taken its toll on me now.
    I also have Degenerative Disc in L4-L5 and mild Scoliosis mid lumbar.

    Rheumatologist said he has DD but is more mobile than i am, he thinks i have created my posture to protect my back from pain ( i hold my body in a way that looks as if i'm stiff and will not allow it to move in a normal way )hope you understand what im trying to say. He said he is not telling me that i dont have pain but i should be more mobile and that the Fibro is making things worse.
    He said i have all the symptoms of Fibro and that my Bladder spasm pain and burning under ribcage is related to it also. He wants me to have Physio but said it will take a long time and hard work on my part to improve my back condition, i thought at 55 i'm over the hill for hard work:)

    He said i probably have Arthritis in my knees and thumb and maybe the pins and needles in my legs are caused by trapped nerve but seeing that yesterday was my first day with him he will deal with that later.

    Here is my problem, he has prescribed Amitriptyline ( ELIVIL i think you call it )for Fibro and Tramadol only if i really need it. I did not realise until i came home that Amitriptyline is an antidepressant, i did a google search and everything i've read about that med it says it causes weight gain, as it is i am 42 lbs over weight.

    I really dont want to start taking that type of drug, im not a med taker, hate them, saw what they did to my Mother bless her but if i refuse to take them then maybe he wont want to treat or help me. I dont want to discuss this with my Dr because i know she will say "what is the point in going to a Rheumatologist if you will not take his advice" i don't get on with her like i did with my old Dr, i could talk to him.

    Can i have your opinions on what i've told you, i'd appreciate it very much and can you give me information about Amitriptyline regarding weight gain, if i gain more weight it certainly will not help my back.

    Many thanks to you all.

  2. Sue50

    Sue50 New Member

    that increases my appetite, 2 of them - Seroquel and flexeril, I'm overweight but in the past 2 years I have managed to loose 40 pounds with weight watchers diet. I have been eating fruit when I'm hungry instead of high calorie, high fat food. Sometimes I get the chocolate ice cream craving and I eat some low calorie ice cream,and sometimes I still go on a binge and eat way too much. I can't say what you should do, but in my case I wouldn't want to be without the medicine, even if it makes me hungry I still feel better with it than without it.
    Take Care
    [This Message was Edited on 08/22/2005]
  3. Bailey-smom

    Bailey-smom New Member

    Amitriptyline is used for many things and can be very helpful. The bad part is that it may cause weight gain. I took it for a few weeks and I did gain 15 lbs but at that time I was not worried about that (I too am over weight) I just wanted to feel better. It did help.

    I think if you are aware of the weight issue you may be able to stop the gain. You would just need to eat healthy - It caused me to crave sweets. I honestly believe I would take it again if it would take away the pain I would just keep a close eye on my waist line:)

  4. Bronagh

    Bronagh New Member

    Hi all,

    It's a great comfort to me to come here and know i'm talking to people that know what i'm going through.

    I Do not like to have to take meds, i was put on the controversial drug Seroxat 8 years ago following my Mother's sudden death, i was put on it by my Dr about 5 months after her death.I have to say Seroxat did help me BUT i gained to much weight over that period of time, i made a decision myself with the help of my Dr to come off the med and boy did i go through hell, it took me 8-9 months to wean off and i still went into withdrawls, i will never ever forget the withdrawal symptoms, so i am so scared of Antidepressants.

    My personal feelings are if i start taking Amitriptyline i will eventually end up back on the vicious cycle.

    I haven't got a good realtionship with my Dr, i'm only her patient about 5 years, i think she feels that she is getting nowhere with me regarding my problems BUT will not send me for further investigations, i was the one that pushed her to send me to a Rheumatologist, she told me that she couldn't see how he could help me, AT LEAST HE IS TRYING, that is all i am asking, you just need someone to listen and understand thats all.

    I've always know i had Fibro, my old Dr told me years ago, its in my file but she must not have bothered to look through them, i certainly did not relate my other problems to Fibro, for example, Bladder Spasms with painful pressure down below, i told my Dr and eventually after months she sent me for an ultrasound, the waiting list was SOOO long i paid to have it done privately, i was glad in one way that nothing showed up but was left frustrated, my Dr didnt bother to do any more follow up.

    I have burning under left ribcage that goes out through my back, i have that about 5-6 years, i've had camera up and down three times, nothing has showed up, Dr at hospital wants me in again to put camera down for the 4th time but when i told the Rheumatologist he said he is sure it is related to Fibro and will send a letter to hospital Dr, i appreciate him doing that.

    Sorry for ranting everyone, sometimes you have to get it off your chest.

    Here i am a Hairdresser ( have not worked in about 8 years )
    almost 55, over weight, numerous problems and i've been turned down for Disability, i am appealing it but know in my heart it won't get me anywhere.

    A million thanks for helping and listening and for being here.

    Best to all,

  5. jbennett2

    jbennett2 New Member

    and when I first started it, I actually LOST weight. About 15 - 20 lbs. My doctor made me start eating more protein. I take it at night before bedtime, so that could be why it didn't make me want to eat!
  6. KerryK

    KerryK Member

    In spite of the side effects, elavil has always proved to be the most effective medicine for my FM problems. If you can get by with a low enough dose, you may be able to avoid much of the weight gain.
  7. Bronagh

    Bronagh New Member

    Thank you for your reply.

    The Rheumatologist told me to take it around 6:00 in the evening, i'll give it a go and see how i get on, fingers crossed.

  8. Bronagh

    Bronagh New Member

    Thank you for your reply.

    I've to take 25mg at 6:00 in the evening, maybe i'll leave it until 8 or 9 :00. Does it make you crave food?

    Thank you again.

  9. backporchrags

    backporchrags New Member

    for many years. before I started taking it I would not go into the restive sleep stage, non REM, therefore I would wake stiff and in pain.
    The cravings on Elavil can be strong. I first noticed my sugar and carb cravings after being on the drug for a couple of years. My doc told me to take it 2 hours before bed. After staying awake 1 hour on Elavil the cravings would start. Eating sugary foods on Elavil gave me a high feeling so I would continue eating.
    After 20 lbs weight gain I finally did something about it. I now take it just before I go to bed. I leave no time for the cravings to start, just right to bed. When I wake up the cravings are not strong as in the evening. I immediatly eat protien foods in the morning, no carbs right away.
    Using this schedule with Elavil has worked wonders. I have lost 15 pounds and no longer binge eat at night.
    Elavil works so well for me and is NOT addictive. The other choices of medication my doc and I discussed, like Klonopin, are addictive so he was adamant I try to stay on the Elavil. I am glad I did. With a little time change I have overcome the weight gain and cravings the drug can cause.
    Before you decide to quit the Elavil discuss with your doc about the time of day, or night, he wants you to take it. You may find, like I have, that modifying your schedule is all you need to combat the weight gain.
    Good luck and keep us posted on your decision,
  10. Bronagh

    Bronagh New Member

    Many thanks for your help, i've recieved great help since coming here, i'm here just a few days and have already learned a lot.

    It's just that i hate meds so much, hate having to depend on something, you feel you are not in control of your life.

    Maybe 25mg is too much to start with, that is what the Rheumatologist advised.

    Take care,

  11. ldbgcoleman

    ldbgcoleman New Member

    I am taking Cymbalta which I think may actually depress my appetite. The reason many Drs prescibe Antidepressants to people with Fibro pain is not nesesarily because you are depressed but because they somehow interrupt the signals you brain is sending to the places you are having pain. Usually they prescribe lower doses than they would for depression.

    You may want to ask the Dr if there is another choice that doesn't have this side effect. Good Luck and take care Lyyn
  12. Rose_Red

    Rose_Red New Member

    Elevil (yes, el evil) didn't work for me at all. turns out I can't take TCA's. From what I've heard the people that can take it find good results.

    I don't understand why you are still with this doctor who is fighting you every step of the way. The best thing you can do is find a new doctor.

    I couldn't live through everyday without Tramadol. I love my Ultram. Just be careful taking it in the beginning - some people get a little space-cadety from it. It's the strongest non-narcotic pain pill you can get. If you can find relief from 1/2 a pill - go for it!

    Us hairdressers have to stick together :)
  13. elsa

    elsa New Member

    It seems that AD's are the first rx doctors go for after a FM diagnosis. The theory is improved sleep with raised serotonin levels and might help with pain.

    Many members here take low dose AD's for FM. It is not the route for me. The sleep and pain benefits do not out weigh the side effects.

    Elavil is a very old AD ... one of the originals with heavy ( possible) side effects ... including the weight gain.

    I really don't get why dr.s are not using the sleep meds. for sleep problems instead of AD's. I am not a "big pharma" basher, but I am friends with enough sales reps to know how strong they suggest off label rx use of AD's.

    Tramadol works great for my pain. My doctor had me take it on a schedule no matter what in order to break the pain cycle. .... every 6 hours. I now take on average two doses a day ... feeling much better. ( Versus 4 doses/day)

    I'd continue doing what you are ..... research, ask questions , weigh the pros and cons and then decide for yourself if that's the route you want to take.

    AD's take time to build up, and they take a long time to come off of. I think for a while before I start anything that stays in my system long.

    Before it looks like I'm preaching against meds that effect brain chemicals, let me say I take lunesta just about every night for my sleep disorder....LOL

    Good luck to you. I hope this helps some... Welcome to the board!!

  14. Bronagh

    Bronagh New Member

    What can i say but a BIG thank you to EVERYBODY and BIG HUGS to you all.

    I should have changed Dr a long time ago, i think my Dr lost interest in me because i still smoke and can't get the weight down, that is what she preaches every time i go to her, she says my bladder spasms are caused by smoking and all my stomach problems are caused by smoking!!! Of course it never occured to her to send me further for investigations, i had to insist on her sending me for ultrasound on my bladder and when the results came back that all was ok she just accepted it.

    I had to insist on her sending me to Rheumatologist, she said she could not see how he could help me!!!!!!!!

    Anyway, im not giving in to this, i have lived with it for a long time without help, i just wish i could help myself by taking natural health methods like what you can buy in a health store, any advice will be appreciated.

    Elsa, what is LUNESTA?????

    Rose-Red, nice to see another Hairdresser here, i stayed at the job too long from i was 16 until 46, worked with pain because i had to but also because i loved my work, when i stopped working i did all families hair, had to give that up too.

    I cant thank you all enough for your help and support, as i've already said i've learned so much here in such a short time.

    Love and hugs to all.

  15. deidrasue

    deidrasue New Member

    I, too, would tell you to find another doctor. We don't wear shoes that don't fit - and a 'fit' with a doctor is much more important. In some ways, they should know you better than anyone else.
    Being an RN, my bet it that your doctor sees your problems as something he/she can't fix - so is frustrated and your presence is another reminder of that failure. It's unlikely - unless your doctor is willing and ready to do research for you - that this attitude will change.
    Dr.'s are 'problem oriented'. It's not their fault - but in med school - it's taught like mechanic's school
    Problem? Identify and attack and the patient will be better. BUT not always sometimes it takes persistence and studying - and sometimes referrals to others. Hard for some docs to admit they don't know everything - and make a referral. (experience speaking here) Others are ok with it - and relieved if the patient finds help elsewhere.
    I tried Elavil twice because my FP had read that it was the drug of choice for FM. Took my thoughts away at 75mg. I could wash dishes, fold clothes - but I couldn't problem-solve my way out of a wet paper sack - and was a single mom of 4. Three weeks and I was done. Couldn't think - even after cutting in half. Think I'll ask him for Lunesta for sleep - commercial on TV last night. Worth a try. Sleep is deteriorating - and that CANNOT be allowed to happen.
    I've since emailed the L.A. Times article to him - who, by the way has FM - he bounced his symptoms off me for confirmation of FM - and hopefully we can get something done for both of us. I'm lucky that since he has the disorder, he understands. Plus, he's a personal friend who really likes to study and grow.
    Find another doc - my best advice.
    Best of luck in your search - you might talk to others in your area and see who they'd recommend.
  16. tcpolchies

    tcpolchies New Member

    Hi! Its been a hile since Ive come into the site but had to respond to you. I see a therapist for POST and to help me deal with my physical pain. I aslo been DX DD phase II and other goodies for some time now. But the psycal pain is the worse! MY psychiatrist has paced me on Cymbalta 20mg (low dosage) since a little over a month ago. I was told that it works wonders with people who suffer with Fibro/Myofacial pain sydrom. People in chronic pain in general. Anyhoot, I have noticed the pain subside some. SO I am getting some relief. Not now of course or I wouldnt be online! hahahaha! We will talk about increasing it soon, hoping it will help even more so with the pain. Ask your doctor about this antidepressant. You may benefit from it.

    Good luck!

  17. blondie45

    blondie45 New Member

    I have taken this for 15 to 20 years for my interstitial cystitis. I only take 25 mg at bedtime, which does help block the pain. I have not noticed weight gain over this time.
  18. Rose_Red

    Rose_Red New Member

    Months go by without being able to do more than the basics on my immediate family.

    I went over my girlfriends house a couple weeks ago and I cut her hair and did her 3 kids. I LOVED IT !!! I had so much fun. Couldn't lift my arms for about 4 days afterwards but it was soooooooo worth it!

    We're going to be in pain anyway, right? May as well enjoy yourself every now and then.

    I never realized how demanding cutting hair is on a body until I got sick.

    ((( )))'s
  19. Bronagh

    Bronagh New Member

    I find it amazing how much help i'm getting here.

    I was a patient of the now semi retired Dr at the surgery, i was with him for over 30 years, he diagnosed me having Fibro way back then, he tried all sorts of meds without success, i had to work and as i've already said mastered the art of ignoring pain but it has taken its toll on me.

    I don't think my new Dr has ever looked back through my records of 30 years, if she did she would have seen where it says in my records i had Fibro and all the meds that i tried, then she could have put 2 and 2 together.

    I have to push her all the way even to have my back xrayed, i've been living with DD for years and she has not coped on what was causing my pain and stiffness.

    Unfortunately i will have to stay with her because there is only one other Dr at the surgery, we don't have a choice changing Dr's where i live when you are unemployed and everything is free.

    She knows now i won't put up with being left on the sideline.

    Rose-Red, i can identify with you 100%, if i cut any family members hair im wiped out after it, my arms feel as if they are a ton weight and i can't lift them its as if the muscles at the top of my arms are tied and cant move.

    Thanks again everyone, hope to talk to you all soon.

    (((BIG HUGS TO ALL)))

  20. JLH

    JLH New Member

    I took Elavil for about a year and had to quit--but not due to weight gain. Even a 10 mg. tablet would put me to sleep forever and I had to get up at 4:30 am to get ready for work. I could not function all day--such a hangover effect.

    I ended up cutting that 10 mg. tablet into fourths and taking only a fourth each night. Doctor eventually took me off it and I then tried various others.

    What works best for me is to take Zanaflex, a muscle relaxer, at night which helps me sleep. Then, I take Cymbalta, a newer antidepressant, during the day. I love it--it helps the fibro pain, too.

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