Afraid of Fibromyalgia diagnosis

Discussion in 'Fibromyalgia Main Forum' started by msgirl67, Jul 28, 2010.

  1. msgirl67

    msgirl67 New Member

    I have just found this site and have read many posts. I am very sorry for everyone that has been locked down with this disease. I have been going to various doctors for the past 10-15 years for pain issues and I am now starting to wonder if this is what I really have. It started many years ago with being diagnosed with TMJ. Years after that I started going to a chiropractor for pain in my neck and back. From there I had a breast reduction thinking it was causing the pain in my neck and back. During all of this I have always had very heavy menstral cycles that lasted for days and cramps that would keep me in bed for weeks. I went through many procedures (Lupron, diag. lap, birth control, ablations, ultrasounds) found out that I had endometriosis and then they finally gave me a partial hysterectomy. After that I started having problems with my left elbow (tennis elbow) and had surgery to correct that. I then had the right elbow surgery a couple of years later. Both elbows still hurt. A couple of years ago I started having panic attacks and with that my bowel issues became worse. I went to see a GI doc and was told that I have IBS. A year after that I was so depressed and just aching all over I went to my PCP who put me on a different IBS medication and then put me on Pristiq for the depression and anxiety. While all of this was going on I finally went to a pain doc for my neck pain and received two epidural injections, which did not help at all. I gave up on that and just dealt with the pain until about 6-8 months ago when I went back. They started me on pain meds, muscle relaxers and sleeping pills, because I have also not slept through an entire night in almost 10 years. They offered more injections, I passed. They offered PT which I went and the only relief that I had from that was the massage that I was receiving on my would make it feel better for a little bit....I was happy with that little bit of relief. I stopped going to PT because it really didn't seem to offer any help with the long term effects and they sent me home with a TENS unit. I use it often, but it really doesn't seem to do anything long term...again. I have had three MRI's and found some disc protrusions and arthritis throughout my spine. I have also been told by my PT that I have scoliosis. My last two visits with my pain doc, she has brought up the dreaded word "Fibromyalgia". I almost instantly so no....each time and that is the end of it. I have been in the medical field for 20 years and really have not heard about this disease except for when I first started in the field and worked for an MD. At that time, we (office staff) were appauled whenever someone would come in and be diagnosed with this disease. We knew that they were just saying this b/c they wanted their FMLA forms and disability forms filled out so that they didn't have to go to work. Well, today I am calling my pain doc and scheduling an appt to discuss this ever scary word of "Fibromyalgia". I have come to the conclusion that if I don't come forward for myself, I will live forever in my own pain and misery. I want to discuss the options and try the medications to see if this will help me get my life back. I am tired (really) of feeling tired and having no energy along with the aches and pains every day. I am one of the lucky ones....I work from home so I am able to get up and stretch, have my heating pad and be able to get in a hot shower to help soothe the aches and pain during the day. I hope one day to not pull away from my husband when he wants to rub my arm or back and to once again to have energy to go out and play with my dog...or just want to go out and walk around the yard. Thank you so much to everyone on here for their support that I read for others and know that I fell your pain and very much hope for a cure to this painful life we all share and have in common. Thank you for reading.
  2. 3gs

    3gs New Member

    Hi Susan

    Im not sure exactly what to say. It does sound like you may have fibro. the sooner you find out,the faster you can start taking care of yourself. rest is key,vits etc.

    Symptoms and severity vary from person to person. NO ONE would ever say they have fibro or cfs to get forms filled out so they dont have to work. I sure hope the attidute in this office changes,its one of the things hurting people with this disease.

    there are lots of good articles here and advise. hoping you hear good news
  3. msgirl67

    msgirl67 New Member

    I'm hoping that I hear good news too...Thank you. I agree that there are many good articles and advice on here. I looked over many of them last night and this morning.

    I am sure that the attitude in the office I worked for has was almost 20 years ago when I worked there. I think that this was the mainstream thinking back then about this disease. I know that it was a terrible thing to even think that someone would want to make up a disease to just not work. Thank you for your reply.
  4. Tizz

    Tizz New Member

    I understand better than you could possibly know...

    I, too, used to be a nurse. I, too, know what the attitude of most doctors is- or at least, used to be - toward fibro. Even the ones who "believe" it actually exists as a syndrome, often assume that it's psychological in origin at least most of the time!

    I mean, Dr. Frederick Wolfe, the rheumatologist who originally defined the criteria for fibromyalgia, eventually RENOUNCED the work that had made him famous!

    Please check out this website, and learn about the NEW clinical fibromyalgia diagnostic criteria:

    I find it fascinating (but frightening) that doctors who don't "believe" in fibro are now going to be given these criteria and encouraged to diagnose patients with a problem that they don't acknowledge the existence of!

    I guess it's some sort of weird medical compromise...

    [This Message was Edited on 07/28/2010]
  5. msgirl67

    msgirl67 New Member

    I would never let something get me down so much as to be a death sentence!

    The elbows were something that I thought maybe I just over used them with all the computer work and outside work I was doing at the time...but I still have the pain even though the surgeries were over years ago. I also have lots of aches and pains and was just thinking it was b/c I am getting older. Mind you, I am only 39 so I started to think differently when my doc told me that I should not be feeling this way at 39! It's weird how it takes others to tell us something before we really start thinking about it.

    I think the worst time I have is when I wake up in the morning. I hurt all over and feel like I just can't move. I have to sit in bed and stretch...the first thing I stretch for is my Lortab and a glass of water. After stretching for awhile, I go to my desk and turn my work computer on and then go back to bed and lay down for 30-45 minutes until I have the energy to get back up. I then work for the next 8 hours with many breaks to stretch and rest away from the computer chair. The pains in my legs are getting worse as I sit so much in this chair.

    I hope that if you need to have a hip replacement that you are ok. My gfather had both hips replaced and he runs at least 5 miles a day. I know that he didn't pass any of this along to me! I also hope that you have someone to help out with daily activities. My daughter and I used to go to the retirement home to visit with the folks there and I don't have the energy for that anymore. It's a real shame...loved to visit and hear stories. Hopefully I can start back soon.

    I do hear about emotional trauma being a link to when FM can really set in. I lost my mom when I was 7 months pregnant and I think that this is when it started with me. It will be 20 years next week that I have been without her. I actually think that this stressor has stayed with me and renewed itself when my daughter became pregnant and had her daughter 4 months ago. Brings back many memories of when I lost her.

    I have not had any tests...I still need to get back in to my pain doc to start talking about this diagnosis and look at what path to take. I also would like to sit down and go through the meds I'm on to make sure that we get everything straight. I feel like a drug store lately. Pill bottles all over my bedside table. Ugh!

    I will look for the grapeseed extract...I have seen that posted many times on this site about taking it.

    I appreciate talking with you. It makes me feel better to relate to others that are having the same issues. My husband is very supportive, but I have lost many of my friends bc I do not have the energy to get out much anymore. Life isn't as much fun as I thought it should be at this point in my life. Thanks for listening. I hope that your day is filled with much warmth and joy.
  6. msgirl67

    msgirl67 New Member

    It's a shame that we (along with others) had that attitude and know that others still have it today. I have had to come to grips with myself being that selfish to think that I knew what these others were...or were not going through. I can only go forward and hope to help anyone that I come into contact with and help educate anyone that can benefit from it.

    I'll have to look up Dr. Frederick Wolfe...I'm learning new info everyday! Thanks.

    I will also check out the website that you listed. I appreciate the information.

    I also find it horrifying that these docs will now just be passing off a "fibro" dx to anyone they think may have some aches and pains. To think about what this will do to the folks that are needing the true help and not getting it and the ones that will be getting the help with no idea they really don't have it and it could be something else underlying. What a load of crap!

    I guess that's why we as pts need to be our own advocates and hope that we can be strong enough to know what questions to ask and question the answers that are given to us. We are so lucky to have the internet to be able to research more easily than years ago.

    Thanks for listening...enjoy your day!