Just so sad and hopeless

Discussion in 'Fibromyalgia Main Forum' started by Sodizzee, Feb 15, 2006.

  1. Sodizzee

    Sodizzee New Member

    I hope I don't come across in a bad way. First I am 50 years old and don't think I should be such a big baby really. I do not know for sure if I have fibro. I was told a few years back by a nuero he thought I might have myofasical pain syndrome gave me a booklet to read but didn't tell me to come back or prescribe anything. I would give anything to know what is wrong with me. I have alot of pain in my body. I had an MRI last month that showed buldging discs in my neck and lower spine. It might be where the pain is coming from. I also have a inner ear disorder that causes me problems. That is where the the neck and back problems come from. Falling and holding myself in ridge type of stance. Now I feel really like I can't use my legs well and my arm and hand hurt on my right side. I saw a rhuemotologist and all she said is we could do some injections or some steroids. That she felt it was arthrists starting in my hands. I guess it might be some arthritis but it feels more to me like its in my muscles. Things that I have been checked for in ANA which a couple times has come up high 1:640 the past ten years. Doctor says it not really important I guess because its a speckeld pattern. Then I had thyroid checked the T-4 was .9 on a .8 to something range said that was ok I was in the normal range. I am just so tired of trying to find out what has happened to me. I don't get any support from the doctors as to giving me a real diagnosis. I get the feeling that I am always on the boarder of what is normal or not normal so they figure cause no problems by doing nothing. I have seen quite a few doctors and have really run out of people to see. The thing that scares me the most is that I am going downhill and feel like in another 10 years I will be in a convalesant home. I don't drive and can't really get around. I sometimes wish that I could just go to sleep and not wake up so I wouldn't have to go through any more days wondering whats going to happen. I don't sleep much and never have. I get maybe 4 to 6 hours a day. Anyway I know there isn't really anything anyone can do I have done all I can do. I go to the doctors and maybe they are all correct. In time maybe I will show something on testing of some sort to help with diagnosises. Just venting I guess.
  2. Cromwell

    Cromwell New Member

    You are feeling so hopeless and low. I think all of us feel like this from time to time.

    The main thing is you have to keep a chart and see how your pain will actually differ from day to day. When you can see that the pain can and does fluctuate - even from a 7 to 10 and back then you can see some days are a little beter.

    It sounds as if you have labarynthitis(inner ear) do you also get dizzy? That is a bummer for sure.

    Are you eating healthily? Trying to exercise some? Able to have someone who understands to talk with? Are you sleeping well? If not you may need a sleep aid.

    These are all important issues.

    The problem with this DD (FM) and CFS is that nothing much does show on tests a lot of the time.

    There are so many different ways of dealing with this pain.
    Many people here do all natural stuff and others rely heavily on meds. Others combine.

    You will receive a lot of support here. For me, it is just knowing that I am not nuts, a baby or anything else. That we all admit we cry and feel hopeless at times. Sometimes each day. Just knowing many people here have the exact same symptoms-some better some worse.

    Also learning what helped each person, as what works for one will work for another and so on.

    I tend to rely on Epsom Salt hot baths, massage, stretching, exercise and a really healthy diet. I take meds only when I just cannot stand it(which could be tonight! LOL) Black Cherry juice. Guai protocol (click on top of boards for this) seems to work well for many here. I have tried it but went off it, but am going back on it soon once I have some tests out of the way.

    Good Luck. God Bless and no you are loved by those here and never alone.

    Love Anne C
  3. kch64

    kch64 New Member

    We all need to vent. It helps us cope.

    try not to think too far ahead. you can't predict the future.

    Just take your life as it is right now. Try to live in this moment and not tomorrow. None of us know if we are going to be here tomrorrow.

    We hope we will, but we don't know.

    It can be so hard trying to get well, but you will make it.

    Keep on posting when you feel like you need to talk.

    We will listen.

  4. Sodizzee

    Sodizzee New Member

    Thanks every one for the replies. I am going to try and be more proactive to help myself. I don't eat right or sleep well. I don't know about the natural stuff. I guess I can read up on stuff and do somethings and if I feel better that might help me know if I have this. I am thinking though I might go ahead and have cortisone shots in some trigger points to see if it helps. I have been putting it off thinking things would get better. There is alot of information here and I am sure I will learn from other members. Linda
  5. hdbubblehead

    hdbubblehead New Member

    Dear Linda,

    Your story "touched me". I can relate to so much. Hopefully if I share with you, you can find some direction to go towards concerning your medical info & feelings about it all.

    After all the tests I have been through I might help narrow down your search for answers. See if these fit after you look them up in medical research books or online.
    see- www.spineuniverse.com (look up Spondylosis-narrowing of the spinal cord)and osteoarthritis
    also, sounds like you have fibro and chronic Fatigue.
    (hand in hand with sleep difficulty and muscle aches,weakness,pain)
    Chronic pain syndrome- can be treated with pain meds and a pain management program.
    depression- anti-depressants or sleeping meds @ night.
    ( if steriods- 7 days then stop )
    don't do the shot thing! I think you will be putting yourself through more trouble.
    I found that shots, or any type of injection (puncture of skin) can cause a "flare up".even for dental.
    Valium helps my muscle spasms relax. And heating pads & blankets. (summer, the air conditioner is on but I can't live without my electric blanky)

    Read about the spine with the disc problems and you will note that alot of your symptoms are from that.
    MRI is the best way for your dr. to see whats going on there.
    I have cervical(neck-c4-7) and lumbar(low back) "Spondylosis"- both require major operations. I will not go through that ever. But, I have limited my lifestyle to very little pysical activity. My Dr.s are so afraid I will be paralyzed if I make one wrong move, but I am in no condition to go into surgery either.
    I was told to have the operations ASAP! I prayed for two days, non-stop.
    I have managed three years without surgery. On the worst days or nights, I cry myself to sleep but I know I would do worse after operations & recovery time needed. Plus, there are no promises the operation won't paralyze me.
    Also, "one" must me emotionally strong.
    *about steriods-
    my right hand was paralyzed for 6 weeks last August,but I have full use now. The emergency room Dr. gave me oral steriods(MEDROL) to take one for 7 days. That fixed my hand like a miracle.It took about 2 weeks before I could lift my hand but each day it got better.
    steriods "beef up" the tissue and help with inflamation.

    (I have diagnosis' including carpal tunnal syn (both hands) fibromyalgia,CFS,Lupus,sjgrens syndrome,Raynauds Phenomenom,depression, sleep apnea, mitral valve prolapse(heart) and other dx.
    I trained horses for many years and took some hard hits, so I don't think I helped my conditions even before I was aware of any troubles.
    no matter what diagnosis I receive,
    I pray GOD will guide me through it all.
    (I am 50 also, and its taken that long to know...Iam not in control but I can help myself to cope.)

    I hope you find some information about your spine, and that will help you deal with the other symptoms too.
    (even if there is no "medical proof" of fibro, treat yourself as if)
    be sure you have supportive doctors too.
    mainly, make yourself as comfortable as you can. Take care of yourself as if you are "a Baby". Don't do too much, mentally either, so you won't suffer. Pain is an indication that you are or have done "too much".
    Oh, and stressful problems bring "flare ups" so retreat from "those people" who create "drama". lol
    Take care and I hope something I have written will help you know that you are not alone. We are abnormally normal.
    smile. GOD Bless YOU.
  6. Cromwell

    Cromwell New Member

    YES RE being proactive. If you post Stormskye she seems to be the resident expert on foods and will be able to recommend some books or protocol.

    A healthy way of eating is to eat organically if you are able to, fresh fruits and veggies if they don't make you feel worse, pure water, good juices that are just the fruit with no added things.

    A good source of low fat protein could be chicken or turkey I was about to add fish but the mercury levels in nearly all fish are too high these days.
    I want to check out sardines as I think they may be safe.

    Probiotics, Threelac seems to be a favorite here. I add mine to Brown Cow organic yoghurt(for the family) or Organic Cow Lactose free yoghurt for me. I have found my stomach is much better after switching to Organic Cow Lactose free dairy products by the way and also my sinus's.

    Pure filtered water. I use RW Knudson organic juices, esp. the black cherry because it is also anti inflamatory and the blueberry/pomegranite due to all the excellent properties in those fruits. If I want a hot drink, I dilute these with hot water.

    Avoid white sugar and any sort of "diet" product or anything that has a zillion chemicals. Icecream: I use Bryers Lactose free, which is also low fat.

    Avoid chemically laden stuff in the home. Candles, air freshners, carpet powders etc. Try and be as chemically free asa you can be. White vinegar and baking soda is just as good as the scented stuff. Plain baking soda will remove pet odors from rugs just the same.

    I personally use Ecover products for dishes and laundry as dish washing liquid is lethal normally. All natural soaps and shampoos.

    Personally, I think it is a mistake to use perm solutions or hair dyes or anti perspirants, esp. the latter. One can get an effective deodorant that does not contain the pore blocking aluminum that some people feel contributes to breast diseases. No dry cleaning.

    It may sem like a lot, but really it isn't, especially if you have a food co op or natural food store in your area, actually shopping is far less stressful than battling a supermarket.

    For exercise I mainly walk but do a few other things too on better days. Also stretching is important.

    I hope you are feeling better today and not quite so alone.

    Start slowly and build up to these changes.

    With love

    Anne C
  7. ritatheresa

    ritatheresa New Member

    Sorry to hear your not feeling good.

    These boards for me have been soooo helpful.

    Going through this can be really scary, there are alot of caring people here.

    Hope you feel better, Ritatheresa
  8. NyroFan

    NyroFan New Member

    I would get a strong grip on the situation immediately.
    If you feel you are going down hill do some doctor shopping and find one who can give you meds to help you feel better and stop the slide downwards.

    I had to 'doctor shop' and it was worthwhile. I also considered a convalescent home back then until I took a firm hand in my care.

  9. lilaclover30

    lilaclover30 New Member

    So much about this is scary. I have spinal stenosis in both my lower back and my neck. Immediately the Dr. said no surgery. Of course, part of that is because i am 75.! I wouldn't do it anyway.

    A good friend of mine,my age, had back surgery and the Dr. said 12-18 mon. recovery! No way will I do that. I go to pain management and have had 2 epidurals in the lower spine. so far, it hasn't worked.

    I get so discouraged because I can't do all the things around home that I used to. With the help oif a chair. today I scrubbed out the cabinet below my sink. I was exhausted.

    But all of you bring hope to each other. without friends like all of you, I couldn't stand it - you all understandf.

    Gentle Hugs

  10. Sodizzee

    Sodizzee New Member

    Thanks for the wonderful information and support each have given me. I have read each one very carefully. I really appreciate it. I am sure you all understand that feeling. I will let you all know how things come along. Linda

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