My first post - and I'm in my First Flare --BIG Time!

Discussion in 'Fibromyalgia Main Forum' started by robbiebaby, Apr 24, 2003.

  1. robbiebaby

    robbiebaby New Member

    I was diagnosed with FM almost 2 years ago. I suffered for that time because my Dr believed my symptoms to be related to side effects/withdrawal from PAXIL. Another DR saw me and after consulting her medical dictionary, and finding that FMS CAN be a side effect from Paxil, she believed that is what I had. But I didn't have it 'so' bad -- moderate pains around my knees, elbows, ribs and especially my pelvis. I couldn't understand what 'all the fuss was about with FMS' because I was coping fine.
    I read many related books and stopped reading because I found so much info didn't pertain to my circumstances.
    Then, 3 weeks ago, all H*LL broke loose.
    I got an AWFUL headache, and it hasn't completely gone away. All my TrPs throb, sleeping hurts my hips, ribs, etc... but I CAN"T FIND A PLACE TO PUT MY HEAD!
    I've been sleeping alot during the day because I wasn't able to go to bed until 4, 5 or 6 am. My depression has increased 100% and I am no longer on Paxil (since Jan2002)and I'm only on 10mg of amitryptiline (G-D, spelling is so hard these days!)which was prescribed for my IBS.
    I keep saying to myself, "Gee I wish I had some ativan or ANYTHING that could knock me out for a while!)

    I guess I've reached the point that I need to seek help, but I don't know where. I honestly still doubted that I had FMS until this episode started. Now I know. I've tried reading books, and what I feel is my 'bible' - the FMS Survival Manual by Starlanyl and copeland. But, my head hurts so much and there is so much nausea and dizziness that I can't. And my face flushes at least 15 times a day.

    I feel like a useless human just existing in my house. I'm sick of my kids just assuming 'mommy won't do that because she's not well', or they just assume that I'm 'not well' all the time -- therefore expecting nothing from me. That sucks-- It's not their fault, they're just commenting on what is, and I SO want to be setting a much different example for them (10f,15m,19m).

    I want to follow the examples in the book, and suggestions made on this site, but my depression is so overwhelming that I can't seem to want to do anything. I've had to cancel countless appointments and am very afraid to commit my time to anything or anyone for fear of disapointing them when I can't follow through (due to FMS or depression)

    Any recommendations regarding meds and help or a support group in the Toronto area would be appreciated.

    Thank you

  2. Sissy123

    Sissy123 New Member

    You need a doc who will give you something to sleep. I am just like you and dont get to sleep until I am so tired my body finally passes out. I think you should go see a phyciatrist for depression and sleep. Have you seen the "Letter to Normals" from the fibrohugs site? It explains, even to children, that there are real reasons you may have to cancel appointments. And until you deal with the depression, and elavil doesnt sound like it is working at all, nothing else will matter. When you have lost the will to do anything you want to do than you need to take care of yourself mentally and physically and your children will benefit also. Seek out another doctor who knows more about your condition until you are satisfied. There is no sense in you suffering so much when there are people that will at least try to help you. It may take some trying but find another doctor that will listen and listen to the people on this site about some suggestions of medications to take to your next visit. These people are wonderful and have given me someone to vent to when I am at wits end. Please feel free to vent any time and ask all the questions that pop into your head because people here care. Look forward to hearing from you again. Sis
  3. robbiebaby

    robbiebaby New Member

    Thank you for your reply.
    I thought I was 'handling' it until not so long ago, because it was very important for me to get off the Paxil because it was doing very bad things to me. I spent 8 months in withdrawl (which is like coming off of heroin) and it still was bad. I wanted to try to 'go it on my own' and 'see if I can manage without meds' -- I was very proud of myself. However, it seems that I may need to 'go another round'. The challenge is in not seeing myself as a failure.

    What I've read about Flare is that it can really exacerbate depression, so I'm hoping that I'm not 'as bad as I think I am' (lol).

    You are right about this chat group. I have gleaned very important info from it and it helped me realize that I am not alone in my journey. A chat group/message board helped me keep my sanity when my late-husband was fighting cancer.
    They are a blessing, as are all who take the time to respond and help.
  4. TinysMom

    TinysMom New Member

    Hi Robbiebaby" Yep, I think you are writing about me!! I had exactly the same problem. I was dx with Fibro last Dec. I was pretty sure I had it before I finally went to see a Rhuematologist who specialized in Fibro. I finally had to ask for an antidepressant. And boy was I glad! She gave me Effexor. It took about 3 weeks to notice the difference. I have had no side effects, except good ones! I had no idea how really depressed I was, until I wasn't! It has not helped the pain, but it has most certainly helped me to deal with it and life in general. I am able to do more because my state of mind is so much better. I now want to do things again, where without it, I could have cared less.
    I encourage you to ask a qualified specialist in Fibro. and do alot of research--I did and was pretty well informed by the time I sought help.
    I wish you every good luck, and don't feel like you can handle this all by yourself--I did and I was wrong!!
    Tinysmom
  5. IndigoSC

    IndigoSC New Member

    Since you are only taking 10mg of elavil at night, maybe ask the dr. to increase the dosage? I haven't been on elavil but about a month, but the dr. has me on 50mg at night. It doesn't help with pain, but does really help me sleep. I can't find a dr to give me meds for pain, but elavil has at least helped me sleep better and made me less depressed...
  6. Shirl

    Shirl New Member

    Hi Robbie, welcome to our world. Its not an easy one, but it can be managed. I have had FM now for over twenty years, raised three kids, and am still here!

    You have a good start with Devin's book, it helped me a great deal. This board is wonderful, many of us have had this for a longtime and we made it, so can you.

    I am not depressed, so can't relate to that, but the others are already helping you.

    Again, welcome and hope we hear from you often.

    Shalom, Shirl
  7. ms1guitar

    ms1guitar New Member

    Hello, Indigo, I was just reading that you said you could not find a Dr that would give you pain meds, That is so Sad to me, I would just Die without them, I don't know how you do it. I have been on Vicodin Es for the past 2 years,it Barely cuts the pain for me.On a Daily basis My entire Body feels like I have been Beaten up,I feel like my entire body is bruised. I have no strength in my Hands, My hands burn, my Feet swell and Burn,I get Very depressed too, My husband doesn't realize how much pain I am in or he wouldn't be so messy around the house. I have to clean my house in spurts. It takes everything I have to keep it at a minimal.It makes me sad to think how my house will look when I am old and cannot keep it up. I know I need to stay with the present and hope that the pain will get better. I do know that when I am in alot of stress at home or in my life, my pain and depression are worse.I think when I can afford a therapist it will help too. anyway Thank You all for being here,You help me alot.My heart goes out to all of you. Betty
  8. pam_d

    pam_d New Member

    I'm so sorry you are going thru this, but welcome to our little (or big!) group. Have you tried a pain center approach? Do they have pain clinic-type places in Toronto like in the US? Ordinarily I wouldn't suggest that as a first step, I'd say try to find a good FM doctor, but I think a first step might be getting the horrible headache under control----is it a migraine (common with FM)? There are many things you can do for that! Where I live we have a "Headache & Pain Center" for that type of thing. I think if you could lose the headache, you might be able to at least think clearly enough to look into your other issues. I use Maxalt for migraines, works very well, but there are other options, too. I'm sure there are support groups in Toronto, such a big city---do a search on them online. Support groups are a GREAT way to find out about the best doctors in your area (and who to avoid), alternatives in treatment, etc. Finally, try not to get anxious about the flare itself! Easy for me to say, right??! I know that for me, when I flare, I get instantly anxious---how long will it last? Will it get worse? Then my anxiety level goes up, and everything feels magnified! After years of this, I've gotten better about being calmer about it (it won't last forever; I've had this feeling before, & I got thru it...these are my mantras now). Anxiety is my worst enemy with fibro, but I have learned to battle it better with time (I don't use meds for it, BTW). Good luck to you, I hope you find a support group & most importantly, some relief!!!

    Healing Hugs,
    Pam
  9. pam_d

    pam_d New Member

    Looked up one support group in Toronto for you:
    Ontario Fibromyalgia Assoc.
    393 University Ave
    Ste. 1700
    Toronto ONT M5G1E6
    (416)979-3353

    Hope this is current info (internet stuff can be outdated, of course)

    Good luck; I think support groups are a great way to hook up w/folks to find new doctors, etc.

    Pam
  10. robbiebaby

    robbiebaby New Member

    for your help

    I will try the Assoc's telephome # on Monday...
    you also gave me the idea tocheck out other things.
    it was very kind of you to go to the trouble
    Roberta
  11. nancyb16

    nancyb16 New Member

    I have some history with using Elavil and as a nurse I see it used alot to help with pain control, somehow it makes the pain more tolerable and they usually use at least a dose of 25mg at bedtime. I personally was started on it in the 1970's recommended by specialist in Bethesda Maryland where I stationed with my husband, who was in the Navy. Most rheumotologists are putting all fibromyalgia patients on Elavil because of some studies recently done. I have not heard of them myself and I don't use elavil at this time because of the foggy brain in the morning and I like to meditate in the morning, which doesn't work with brainfog.I however used a lot when I was first diagnosed because of the pain it really helped me to sleep deeply and raising a family sleep is very important, and preferably at night. Ha Ha I used to work the night shift as a nurse and would drink stimualants to stay awake and the need to take my elavil to sleep, not really a smart way to treat my adrenals but I single at that time and had no other plan to keep things together. to make this story short I guess I'd say to try to either increase your elavil dose or find a md who will give you something to help with sleep. many people on the board have used different things so I know you will find something. Love to you as you move on.
  12. kmelodyg

    kmelodyg New Member

    Robbiebaby,

    Welcome to the board! You will find some great people who can pretty much relate with just about anything that you are going through. I have also taken amitriptaline, but have discontinued it. It left me comatose for the whole morning after taking it. And it didn;t help me fall asleep or with the depression. It looks like you may need to try to find a doc who will listen to you. That is priority #1. Then mabye look into finding an antidepressant that will work for you. I take 20 mg. Paxil which helps me tremendously. And you definatly need something for the pain. You need to stand up for yourself and fight to be heard by your docs. I just kept pushing and calling them everytime a new med would not work for me. Eventually they will cave to some degree. You are worth it!!! Just remember that. I know that you do not WANT to be in this situation right now. If you are having problems getting to an appt or if you can;t get into someone right away, then get yourself to the ER!!! This is very important that you get on top of this right away. Especially since you have kids. I myself do not, but I know that I would have to fight tooth and nail if I did. Please come back and write as much as you need to. We will be here to answer any questions that you have or if you just need to vent. This board is so great for that. Good luck to you hon!

    Lots of love,
    Kathryn