I need a little advice

Discussion in 'Fibromyalgia Main Forum' started by mom4three, Mar 9, 2006.

  1. mom4three

    mom4three New Member

    I have had FMS and CFS since 98. I was dx with MyofascialPS last year. Well I have been going down hill for about 2 years however the last six months has been crashing down. My pain has become so horribley unbearable. I am taking so much medication I cannot stand it. It only makes it so I am not at a point that I want to throw myself off a bridge. (just a figure of speech not really thinking i would)
    My hands and feet are numb or tingling. Every joint in my body hurts. All of my muscles are screaming at me. And I am exhausted. I am just wasting away.
    I have no memory. I cannot complete thoughts.
    Is this all Fibro? Or is something else going on? I just keep thinknig something else is going on here. So I turn to you all. Are there others out there like me? I am only 30. I cannot imagine living my entire life like this.
  2. mom4three

    mom4three New Member

    So this is a flare huh? wow I gues I just never thoought it would take 8 years before I had on. I am on darvacet, fentynal patch, neurontin, zoloft, requip, topomax, ultram, elavil and I am sure i am forgetting something.
  3. cosmoo

    cosmoo New Member

    Hi,
    well I am sorry to hear how rough thing are right now, you are a trooper for getting your questions out. I do hope things will get better for you soon. Since you ask for advice and I can only give it from my personal experience, here goes..Some questions you may want to ask yourself at this time-
    1) If "I " still feel enough pain to want to "jump off a bridge" is the particular type of meds I am taking really helping? Perhaps a change in types or dosage would work.
    2) The hands and feet numb and tingling thing can be from some medications or many other neurological things-have you spoken to a neurologist or done any type of testing? Don't let this continue, you could save yourself from some permenant damage
    3) Joints hurt- again some meds and some combinations of meds can highten this feeling. Also many forms of arthritis bursitus ect... cause this, have you done any blood tests for these?
    4) Memory, well some of this just goes with the territory as you know, but many of the meds we take can increase this effect, and again certain combinations certainly can make you feel like a brain zombie. There is also much literature on how pain signals can "shut down" your brains ability to think because they are using up all the "channels" to override any thing else coming in up there-major frustration to say the least. Sometimes a mental time out of deep breathing or quite for 5 minutes can help regain sanity for a few hours.
    5)Question for self again "would I be better without the meds?" It seems impossible and I am most certainly not against using any of them but I can say once I went off all meds (forced to by body-another long story) I have actually been feeling a whole lot better, but as I said that's just me.
  4. spiritsky

    spiritsky Member

    So sorry to hear of your pain. Do you have a good doctor? If you don't, and you can afford it, you should consider going to an FFC (FibroandFatigue.com). They have several clinics around the country and have an outpatient program so you don't have to visit the doctor in person after the first visit. They have helped me tremendously over the last 4 months and I am getting my life back again. I too was very disabled with CFS and rarely was able to leave the house or do anything.

    good luck to you...if you want to know more about the FFC and other peoples experiences just do a search on this message board for "FFC"...

  5. mom4three

    mom4three New Member

    I live about an hour outside of Portland and they are doing some wonderful research on Fibro. I have several wonderful doctors but I think they just kind of all think yep its fibro.

    I guess my main question is all of this horrible debilitating pain all from fibro. Something that I have had since 98 that is now causing me to feel like I am dying.
  6. LittleBluestem

    LittleBluestem New Member

    If you have been dx with Myofascial Pain relatively recently, that could be what has brought your pain to it's current level. Are you seeing a Myofascial Release Therapist? If not, I would recomment that you do so.

    The book "Fibromyalgia & Chronic Myofascial Pain, a Survival Manual" by Devin Starlanyl and Mary Ellen Copeland is a good one.
  7. tandy

    tandy New Member


    Sure sopund like Fibro to me! a bad case.

    I doubted my Dx for yrs because of the extremes of my pain. I thought for sure they were missing something.

    My FM took some time to progress also.
    I've had this illness for about 13 yrs and the first 5 yrs or so were managable. I did get good days here & there.
    Now,..I never ever have a good day.
    Good day? Whats that??

    A good day is being able to say my pain is a 5 or 6.(on the pain scale 1-10) and thats with meds,
    When I don't take anything for the pain its at a 9 daily.
    10 being the push stages of labor! lol no joke really.
    My good days are a normals horrible flu day.

    I have memory troubles too. its very scarey.

    No book ever tells ya just how disabling Fibro can be.
    Info sources on Fm make it seem like its a disease thats treatable with meds. and bearable.
    Its none of thee above. (not for me)

    God Bless those who have this illness under control!
    I lost all control. This body is'nt responding to anything thats suppose to help Fibro.

    Do you have a decent dr.? one who will at least treat the pain? Thats half the battle.
    Hang in there
    There are plently of us out there, your certainly not alone :)
    Hugs
    Tandy

  8. mom4three

    mom4three New Member

    If I could I ould come to you and hug you. Reading your message made me cry. It is me to a tee. I feel everything you said. I have researched and researched to the point that I could probably write a better book then most. And nowhere does it sat any of what I feel. You are right it says it is all managable. It makes it sound like it is this disease that if you exercise life will be good. Well if I could walk up the stairs and finish alittle laundry life would be good. If I could finish the dishes life would be good. If I could play with y kids life would be good.
    Thank you so much for posting and making me feel not so alone.
  9. lovethesun

    lovethesun New Member

    I would put stage 10 beyond labor(and I only had mild meds while laboring)It's awful.I'm getting so that I can go for a ride somedays and if I use my wheelchair I can be out for a couple of hours.

    I've found that if I drink lots of water the fog is much better.I don't have cfs though.Praying for you all.Linda
  10. pemaw54

    pemaw54 New Member

    with the symptoms you describe. I hate this disease FMS. There have been days when I no longer want to fight this pain. It would be so easy to just goooo. But then I think of my loving husband who is so good to me and my boys who are in college and work fulltime and are on the national deans list. And our 2 grandbabies and missing out on more babies in the future. Im afraid it would mess alot of things up for those left so I keep plugging along. We all understand what you are going through and someone is always here for you. God bless and I will keep you in my prayers

    Suzette
  11. tandy

    tandy New Member

    I'd take that hug if I were able.`

    I'm sure you could use one too. :)

    This disease really sux!! I noticed again that your 30?
    Thats exactly the age when all this hit me.
    I'm 43 now,and have managed SOMEHOW to raise 2 small children during.
    There were times when I could'nt even lift my babys out of the swing,or crib.
    Thats when I knew my having babys days were over.
    I got my tubes tied when my youngest was 9 months old.

    I remember times when they were real little saying/thinking "God I just want them to grow up so that this will get easier".
    How cruel,... a disease that makes you NOT able to be a Mom. But books don't tell ya that!

    I pray something better will be found to help us all~ till then all we can do is Do our best.
    Loads of understanding/Hugs
    Tandy (again) lol
  12. ma2alex

    ma2alex New Member

    Gotta tell you, if you are not getting relief with the meds you are on, you need to talk to your doc. Those are some pretty heavy duty meds and probably respobsible for some of your exhaustion and feeling of "wasting away". I know for sure that elavil, darvacet, fentanol, Topamax and Zoloft are all known to cause drowsiness. Also, I take Topamax and it causes unbearable numbness and tingling in my extremeties (but I prefer that to my migraines- which is my reason for taking it). This is a common and well known side effect of Topamax.
    I am so sorry that you are having such a rough time. I would definately agree with others here that you are in a flair, the good news is that flairs usually subside... Inthe meantime, I can tell you what helps me:
    I have had good success with Flexeril. I take this at bedtime with 3 mcg of melatonin and I can actually sleep. I usually also take 800 mg of ibuprofin also. Darvocet does nothing for my pain, but I have gotten occasional releif with percocet, only if I take it with phenergan (I have a lot of trouble with nausea).
    Also, my doctor recently told me there is new research to support a low glycemic index diet in fibro. I figure, what can it hurt. I haven't been doing it long enough to really say if it helps though.
    Also, I noticed someone mentioned the FFC. I had my first apt there on Monday. They are really nice and I am very hopeful that they will be a big help to me.
    The last thing I can say that has helped me is my memory foam mattress topper. It has made getting into bed something I don't dread anymore.
    Hugs,
    Dawn
  13. tlayne

    tlayne Member

    i just found this site & it is the only chat room or message board that I have ever joined. I was scanning through to see if there was any helpful advice or possible solutions to fibromyalgia and I seen your message. About 2 hours ago I went to a doctor (mine was not in so I seen an associate), I left there feeling like I am a drug addict looking for a fix, or a mental case. He listened to me for about 15 minutes, and his response was that I needed to exercise 20 minutes per day to relieve my symptoms, and then he charged me $135.00 for his advice. I have tried to exercise for the last three years for three minutes a day and cannot even do that without extreme fatigue & increased pain. I, like many of you, at times just want to give up. But you know what, I'm not going to!!! I refuse to give up, and I refuse to let a Doctor that has most likely never had a sick day in his life make me feel like I am an idiot. If anything he needs to get off of his butt and do some research. There, I feel better! Okay, now I will tell you what I have found that has helped me and hopefully it will help you and others. I am on Cymbalta, Flexeril, and recently I started taking liquid calcium with magnesium & phosphorus, along with Ultimate Omega. All I have to do is quit taking the Cymbalta to know that it does help. I am still in daily pain, but it is much worse without it. The liquid calcium has allowed me to STRETCH!!! Without it I coundn't stretch without muscle spasms. I even pulled a muscle so bad one time that it took me 6 months to recover. Now, it feels sooo good to stretch! The thing that I am struggling with now is the Fibro-fog. I am a nurse, and that is not a good thing to have on the job. I am hopeing that the Ultimate Omega will help. Finally I believe that I am a child of God and that he wants me whole and healthy, so I will keep searching and praying! We can not give up!! Best wishes!
  14. mom4three

    mom4three New Member

    Thank you o much for your reply. I went to the doctor yesterday and he told me that he would be more then willing to make me go through painful test to proove to me that I have fms but all it would do is cause me more pain and he did not want to do that. WHen he knew the test would all be normal.
    He also said that I am the worst cause he has seen and that he has seen worse but not many. He did not push a ton of exercise but said conditioning my muscles woud help and lets give water therapy a try again. So hear we go again.
    He is much nicer because his wife has fms too.

    it is really nice to hear that there are other chronic sufferers. And not cyclers. Maybe we should all write a book although it would take us many years to complete because one of us would be too tired one day the other too painful the other too many appt. lol..
  15. tlayne

    tlayne Member

    A book would take too long. I had to smile at that! But I have thought about keeping a Fibro diary. I can almost picture it now, It would have a lot of absence days because I would be too tired and in too much pain to write after a work day.
    But at the same time maybe it would give my doctor some insight. You are so lucky to have found a doctor that knows this is not all in your head, or that you are not a drug addict looking for drugs. I think that is half of the battle. Does any one else ever feel that way. Sometimes I think maybe I am going crazy.
    I read somewhere that people with Fibro are situational depressed (due to all the yuck of fibro), and not clinically depressed. The difference is that a clinical depressed person has no desire to do anything (I am not knocking them, I am a nurse and I feel for all hurting people). Whereas a person with Fibro wants to have a normal life without pain & fatigue. This made sense to me as my desires and wants are just to be pain free, and have energy to enjoy my family, friends, & hobbies. Right now, I do not have that.
    But on the upside....I love my God with all of my heart and soul! I am a sky watcher, and I look for him to come back always. Just think, then we will all be pain free and without sorrow! We will not be drained from our energy, because he will be our energy!!!! I believe that every flower and blade of grass will praise him!!!
    I believe that all of this has made me a better nurse, because believe me I have worked with and had to be with, at dr. appt.s, the other kind.
    We always have to find the positive, and keep our hope! Sometimes that is easier said than done.
    I think lol means lots of love, and if that is so, lol to you! If you don't mind when I find positive sayings or scripture I will post them to you. lol tlayne P.S. if anyone knows a Doctor in the Twin Falls, Idaho area with experience with Fibro/Chronic Fatigue please pass it on. You would think I would know, but I don't.
    [This Message was Edited on 03/11/2006]
    [This Message was Edited on 03/11/2006]