New here and to all this FIbro stuff and need help desperately

Discussion in 'Fibromyalgia Main Forum' started by KarenL47520, Feb 18, 2003.

  1. KarenL47520

    KarenL47520 New Member

    Last week I found a message board and posted to it. Out of 66 views of my post I had only 4 replies from other newbies who were just as lost as I am. I am hoping this going to be a more friendly board.

    I am 46 years old, I work at home as a medical transcriptionist. Jan 20th I had to have a disc removed in my neck at the C5-6 level, bone funion done and instrumention put in place. Other than that I do have confirmed arthritis in my left knee, have had 4 surgeries on it and arthritis in my lower spine along with digenerative disc disease.

    I am on my 3rd marriage, I had 2 abusive marriages, my second husband died waiting for a kidney transplant. The last 6 months he lived, he was good to me, I think he was terrified I would walk out on him and he was completely dependent on me by that time. I stuck it out, I believed in my vows, for better or worse...... He had been gone about 18 months when I met a wonderful man. I don't think I could have asked for a more wonderful person. It is almost like he was special made just for me and at the age of 46 I am finally happy.

    As a child I suffered extreme physical and sexual abuse so it was no great surprise that I wound up in 2 abusive marriages.........

    Anywho, now to the present. For several years I have had what my doctor said he thought was chronic fatigue syndrome. I would have episodes that would last anywhere from 6 days to 6 weeks. I would get out of bed exhausted no matter how many hours I slept. At times, you could not place your hand anywhere on my body that I did not hurt. The episodes would come and go and I noticed stress would often be the trigger for another one.

    As I mentioned before with the episodes of the aching I would have, those had dropped off considerably. (My husband has the most kind and gentle nature about him, and I am not terrified that I am gonna get myself beat any second, I not on edge all the time with him) I would still have brief ones just not as bad as before. I saw my neurosurgeon again this past Monday and he said he wanted a myelogram to try to pinpoint what is going on. He doesn't think I have spine compression anywhere else but he did mention he thinks it could be Fibromyalgia.

    I am still off work from the neck surgery so I have lots of time to do research on the net about it. The 18 trigger point test, I was able to say YES to 16 of them!!!!!!!!!!!!!

    Always before an episode of the terrible achiness comes on, prior to it, I don't sleep well at all despite taking something to help me sleep.

    Another major problem I have developed since the surgery is a problem with my balance. I have fallen several times, as much as 3-4 times a day. At times I walk like I am drunk and I DON'T drink. It has gotten to the point when we go somewhere either John my hubby has a hand on me or I am hanging on to him to help steady myself. Headaches.......... I have what I call a "half-baked" headache almost all the time, it ranges from tolerable to a full-blown migraine.

    The fatigue is just unbelieveable. My legs will hurt so bad and feel so heavy that it is like they have concrete blocks tied to them. If one of my cats are lying in the floor, if I try to step over them, I can't, I end up kicking them so I have learned to go around them.

    My arms feel like spaghetti. My hair is just above my shoulders and to blow dry my hair and roll it on electric rollers is just such an ordeal for me. My arms will ache and hurt so bad from it. I used to wear my hair short, wash it in the shower, comb it and let it air dry. John once mentioned he would like to see me let my hair grow out so I started letting it grow. He told me the other day if it is that much of an ordeal for you, cut your hair short again, don't put yourself through pain for me, meaning himself.

    Normally I have a sub-normal temperature. When I am feeling fine, my temp almost never reaches 98 degrees. Now for the past few months I have been running low-grade fevers quite often despite me not feeling sick in any way, no sore throat, no cold, no nothing.

    Medications I am on: Prozac, Norvasc for hypertension, Entex LA for sinus problems, and currently I am on Neurontin 1600 mg per day and Vicoprofen for pain.

    BRAIN FOG..... Geeze Louise, at times it is really bad. At one point I was beginning to think I had the early symptoms of Alzheimer disease.

    Hubby has been so kind and gentle with me about it all. If I feel too bad to cook something, he will help me get something simple together. He has been great to help out with the housework, laundry, vacuuming, helping with the animals; we have cats, a dog, 5 ferrets, and 3 birds. No children, just furry and feathered kids. I had 6 premature births resulting in no living children.

    I hope someone can give me some answers. At one point the pain was so bad before my neck surgery and I was out of my pain meds and doc wouldn't refill them until I came into the office and it was on the weekend. I told John, I will write the suicide note and sign it if you will just shoot me. He was horrified that I would say something like that.

    Today, I feel like I want to crawl in a hole and pull it in after me. I hurt literally everywhere on my body. My head is pounding, legs feel too weak to hold up the weight of my body. I CAN'T and DON'T want to live this way. This is not living, this is more like some sort of a cruel joke. I have absolutely nothing to look forward to in my life, find pleasure in very few things. This pain is destroying my life.

    God PLEASE, someone has got to help me.


    LITEFLAMES New Member

    Hi karen welcome to the board!!!!!
    Boy alot of what you said sounds like my past , the extream abuse!!! as a child, 1 abusive marrage,Ect,,,
    When you said (The hubby you have now is like 'he was made just for you )!~ My husband two , I married a atheast (spelling sucks) the first time around , When i men't my husband of today & alway;s john , He said to me ,I Think God sen;t him to save me,He couldn't of been closer to the truth,,I had a Bad Drug problime,To make a long storey short , It was him finally saying get help & Get out !!!!!
    This was after bullshiting him over & over againe ,,
    Well that was 15 yr's ago !!!!!we have 4 children 2are from first marrage 2 our ours ,he adopted one,
    well you sound like you'r in so much pain ,,you'v come to the right place,, this board has helped me so much just readying the stuff, Let's me know I'm not Crazy,,Iv had fibro 9 yr's if not longer ,The last 4 yr's have been a living Hell, From Dr to dr ,Tried all kinds of pain Meds NOTHING worked!!!!Finally , Went back to my famialy Dr ,Who said cindy i can't beleave how bad you look!!!!She remembers the , arbobic & health Nut , Havn't worked out in 4 yr's
    Had knee surgery 5 yrs ago, Dr Said no moor arobics, I was going to be a teacher, My sweet husband made me my own Gym in our Basmen't used it for a yr , Then got tto poin't i would do 4 situp's & be in Bed for Day;s ,anyway back to dr , She knows abought my past addition, but put me on oxi
    Its changed my life ,It's only been 3 mths ,You know us ,(waiting for the bottom to drop out!!!! But let's both keep faith , once you'r a bit better ,You should get you;r dr to get you on somthing that will work for you.As far as not having all 18 points, i didn't eather i to had 16
    hope you stay hear w/ us
    right back
  3. kgg

    kgg New Member

    I am not new to CFS/FM but new to this board. You are on the right tract as far as taking the time to research and become as knowledgeable as possible about this DD.

    I have to say that if I was in your shoes, I would be looking for a new doc. Maybe a specialist that could help with smoothing this journey you are on. It is not acceptable that you are in so much pain without relief. I do know that general anesthesia is really hard on the body. But for us with this DD is can take a long time to get over. Maybe that's why you are running the low grade temp.

    Massage is also something that has helped me a lot with pain. I take 2 baths a day for pain. The wet heat makes it feel better. I moved out of a wet moldy house that caused all sorts of allergy problems. I am not saying that you should move, but could this be an issue that hasn't been addressed? You have sypmtoms of someone with allergy problems also. Many of us with this DD have food amd environmental allergies.

    I have found that this journey is a process similar to peeling an onion. One layer at a time. But maybe a referral to a specialist or a new doc would shed some light, and perhaps address your issues so that you would be more comfortable. It helps to be in charge of this so you don't feel re-victimized all over again. A doc with a team attitude would help.

    Hope this has helped. I try not to "fix" but I'm afaid I have. Hang in there. We are all with you. And I will be praying for a breakthrough for you. Blessings. -Karen
  4. onesmileymyley

    onesmileymyley New Member

    HI I am sorry for all your pain. I am 29 and have had fibro for 3 to 4 years but I do feel like I have had it since I was a child. I have 5 soon to be 6 children and before I was told this is what I had I was always asked if I was being beaten from my hubby and who wanted to have so many children and the list goes on. My hubby is an awsome man and very very good to me. I do not know if I would be here talking today if it weren't for his goodness and understanding. I do not take anything for pain as I believe that my body is going threw enough as it is. I do see a chriopractor 3 times a week. I also have thyroid disease as well as cfs and myofacial pain syndrom. TMJ as well. I have my good day's but have many more bad then good.
    I am not sure how much help I have been but I thought I would introduce myself and tell you a bit about me. Also you came to a very very good board. It is by far the best I have found. Good luck and God bless
  5. lassiecass

    lassiecass New Member

    Hello Karen,
    I want to welcome you to this message board. There are a wonderful group here who are very knowledgeable about CFS and Fibro. You sound to me like a very strong person to have survived all you have been through. Please don't let this DD get you so down that you feel you have only one way out. Maybe with all of us here we can help you find some relief. My suggestion would be to go to the nearest bookstore and get some books on Fibro. There are some great ones that will help you to learn how to cope. I don't remember all of them but someone here will be able to steer you in the right direction. Most of us here are suffering from more than one disease or problem. John sounds like a wonderful man so his support is so very important for you at this time. Try to find a Doc that specializes in Fibro and CFS. I don't know where you are in the country but post a question asking for someone on this board for info on Docs in your area. You sound like a great person Karen so please help yourself and John by becomeing educated on this problem. I wish you much luck and feel free to ask questions anytime about anything.
    Soft Hugs,
    Sandy (Cass)
  6. mersey_ferryman51

    mersey_ferryman51 New Member

    Just to let you know....I'm 51, and have had fibro since 1989.

    EVERYTHING you're experiencing with your symptoms I'm going through ALSO! It's a CRUEL condition, but you've found the absolute BEST groups of people in this forum, and you don't have to look ANY FURTHER for all the CARING, SUPPORT AND UNDERSTANDING you need!

    DON'T GIVE UP! And STAY with us here on this board!

    EVERYONE here feels your pain and your frustration, and we're here for you!!!!!!!

    Larry G.

  7. Kathryn

    Kathryn New Member

    The people on this board are the finest you will find anywhere. There are days and times when you might not get too many answers, but if that happens, just bump your post up so more people will see it. Your symptoms sound very familiar, so don't feel that you are alone. We all care.
  8. DavidTeer

    DavidTeer New Member

    My wife has fibro and I do all I can for her. I know that this is an illness and I truly sup[port her.
    As I have been told right here thatmy wife is so lucky to have me around
    You are lucky to. Times get hard ever so often and you will fray a few nerves and he will to , but I'm sure he is in this all the way and understands fully. Be thankful that you have a loving spouse to care for you. Andenjoy this board I do.
  9. Sandyz

    Sandyz New Member

    Gosh, you`ve been through so much like all of us here. I`ve been through so many of the things you describe. How do we get through it! This board will make all the difference in the world to you. To come here and talk with people that finally understand and care so much, its the best thing you can do for yourself.

  10. layinglow

    layinglow New Member

    I am so sorry, I can hear the desparation in your letter. The first thing I would say is that you need to address your pain issues with your doctor. If you are getting no relief it is time to pull out some bigger guns. Sounds as if the vicoprofen...isn't doing the trick, and need to go to a stronger opiods. If he is unwilling have him refer you to a pain specialists. There is absolutely no reason for some one with chronic severe pain, not to receive meds for relief.

    Thank goodness you have such a loving spouse. It makes such a huge difference. I have had the same questions you have about living this way. I too, have made the same request of my husband, and like yours he wouldn't oblige. All that is to say, know there are good days ahead. Thank goodness these disorders wax and wane.

    Please do try to find someone who will treat you adequately. After a long search I found a Fibro/CFS Specialist, who was willing to adequately treat my pain, and we have made great progress with supplements, vitamins, etc. For the first time, in quite sometime, I have found hope again.

    Welcome to the board, and Best wishes,