New to boards and chats

Discussion in 'Fibromyalgia Main Forum' started by lanaiwahine, Aug 1, 2006.

  1. lanaiwahine

    lanaiwahine New Member

    Hi everyone,
    I have been reading some of the posts and I feel like I am in heaven. I can relate so well to the stories of pain and frustration.
    I started out having my gallbladder removed at 26, 6 months after the birth of my first child. It was traumatic with 30 hours of labor and 1.5 hours of hard pushing. My son was 10 lbs and the doc finally decided on a c-section. ( I should have started my lack of trust in docs at that point) I immediately started having explosive diarrhea and severe weight loss. I was diagnosed with bile salt induced diarrhea from the removal of the gall bladder. I suffered severe nausea and loss of all energy. I was going to the bathroom sometimes 30 times a day and could never eat out as I would not make it home without exploding. I was told I just had to live with it.
    I started taking medical cannabis and had great relief in the nausea and was able to eat again and gain weight. I was 5'10" and 105 lbs when I tried it.
    I started having urinary tract infections for the first time following the removal of my gallbladder and the loss of my second child at 5 months. I went to a urologist who performed a cystoscopy under distention without anesthesia. (#@$%#*& Sadist) The urologist actually yelled at me to stop my urethra from spasming so he could insert the tube, like I could control it. ( Again I should have started to think that docs weren't all great people). This urologists diagnosis was chronic cystitis (UTI's) and told me I just had to live with it. I was put on antibiotics about every 2 weeks and had major yeast infection problems.
    I continued this way for 10 years with antibiotics, anti-yeast meds, and med cannabis as my only relief. Finally 10 years later and a total mental and physical wreck, I went to a different Urologist who did the cystoscopy under distention ( with anesthesia) and got the diagnosis of Interstitial Cystitis. I finally had a real diagnosis and I could work to help myself with this knowledge.
    I went to a urogynocologist who made the vestibular vulvodynia diagnosis. Now I live on an IC and Low Oxylate diet, basically I can eat nothing.
    I have tried every pharmaceutical known to man and very few have helped my condition. The only drugs that help are narcotics like MS Contin. The narcotics have stabilized my IBS, and I have regained my weight to 160. They have also helped my manage the severe pain. Diazapam relaxes the pelvic muscles to some degree as well as reducing anxiety about the pain. I have used uroxotral( male prostrate drug) for urethral spasm and sanctura to be able to sleep without getting up 10 times a night to go pee. I dont ever think I will get to the point where pain is not a every day limitation on my life, but the pain meds make it possible for me to have a better quality of life.
    I have been wondering what the chances are that I have 3 different diseases without there being some underlying illness that is causing all three. I have read about fibromyalgia and feel that I fit the description of that disease as well as my three diseases being found with FMS patients. I have pain all over my body, I am completely disabled at this point by pain and some days cannot even get out of bed from the pain. I tell my family that I feel like I have been hit by a Mack truck and just cant move. I am 38 and feel like I walk and look like and 80 year old.
    Sorry for the long story but maybe someone out there has had a similar experience that I can talk to.

    My support system is very weak. I dont get much support from my family, especially my husband, who's mother is a hypochondriac. So of course all of this was in my head to him until I showed him the pics of my bladder. Now he is more in denial than anything. My kids are pretty good about it but I feel bad when I cant participate with them like I would like to.

    I want to let you know that medical cannabis is a wonderful herb that can relieve spasms, calm anxiety, and relieve minor to moderate pain. It also helps immediately and immeasurably with nausea caused by conditions or pharmaceutical side effects.
    "Cannabis is the safest non toxic substance known to man" " It would be arbitrary and capricious for it to be withheld from patients" Federal DEA Law Judge- Francis Young.
    Before the big pharmaceutical companies came to being, it was the safest drug used for pediatrics and geriatrics. On another note, while I was doing biofeedback for pelvic floor dysfunction I noticed something really interesting- I was working on relaxing the muscles- my lowest relaxation number I could get to was a 17 when a normal person has a 3 as a regular resting, relaxation number. I tried visualiation, meditation, all sorts of things and I couldnt get the number down. My doc was concerned that I was so spasmodic and had such a high number. I smoked cannabis, perfomed the biofeedback and my number went down to 3. Amazing. My doc was stunned, but the numbers didnt lie. We tried it again and again, with and without cannabis and always got the same result.
    BTW there was a federally funded study NIH released in May 2006 that sought to prove what in cannabis caused lung cancer. Their findings were that there is no relationship at all between lung cancer and cannabis. In fact they found that cannabis kills dying cells faster than without it, and in actuality that is where cancer forms is in dying cells. They plan to pursue a study that may prove cannabis to be an anti-tumoric med. The NIH did a study with rats in 1984 that proved that cannabis not only reduced the size of cancerous tumors but completely eradicated cancer in some of the rats.
    Sorry again for going on, but I only had this herb to help me for 10 years and if anyone out there has MS or a spasmodic condition, nausea or digestive disorders(gastric sedative) please try this, it does help.

    I am relieved to have found this group of caring people. I look forward to talking to you and helping anyway I can. If any of you have a similar story to mine,please respond, I would love to talk to you.

    I am considering getting tested( Pain points) for FMS as I really think it is a possibility. I am worried if I get the diagnosis if it will make me completely un-insurable. Has anyone had that problem?

    Thanks for letting me get it all out here. I look forward to getting to know you and learning from your experiences. If anyone has any advise for me please reply.

    Kindest Warmest Regards to everyone,
    Take it one day at a time,
    Lanaiwahine- Gretchen
  2. texasmaia

    texasmaia New Member

    Sounds like you have really been through a difficult time. I am glad you have found this forum and look forward to getting to know you here. It moves real fast so it's hard to keep up sometimes. Just caught your post flipping to the second page already. Sounds like you have alot to offer and I hope we can offer you encouragement and support.

    Don't know about the FM dx and insurance questions you are having. If you are not on insurance and plan to be, I would consider waiting for a clear diagnosis until you are. I believe it is one of those things the insurance companies probably are scared of and run from, but that is just my guess.

    Again, a big warm welcome to you!!

    Blessings,
    Maia
  3. barbinindiana

    barbinindiana New Member

    Welcome to the board! Sound like you've really been though it. It very well could be that you have fibromyalgia, and it could be that all you've been though has caused it. Do go to a doctor that understand fibro and have him test you for it. A doctor that knows what he/she is doing will do a tender point test, and be able to tell, although if you don't have 11 tender points that doesn't nessarily mean you don't have it. The tender points do tend the come and go at different times.

    Most of us here know what it's like to be mistreated/misunderstood by doctor's. Seems that if they aren't educated on illnes you have it's easier to just blame the patient. There should be a special hell for mean doctors. Just kidding LOL.

    Glad your here.

    Barb
  4. foggyfroggy

    foggyfroggy Guest

    Welcome to the board from another Gretchen! The people here are great and you will find lots of usefull info and sympathetic ears.

    Gretchen
  5. tandy

    tandy New Member

    So glad you found us all :)

    From reading your post I'd say theres a BIG chance you have Fibro.
    Are there any 'spots' or areas on your body that feel like a bruise but can't be seen??
    Of your other confirmed illnesses, none of those would cause really bad muscle pains and being drained all the time. ?? just my thoughts~

    I personally know 2 people who get pill form (medical) cannibis. and its helped both of them alot!!!
    We've spoken on a couple of occasions about it.
    I say whatever helps,do it!!
    Its gotta be better on our system than the drugs our drs. give us that barely touch our pain issues.

    Hope you'll hang around and get know everyone~
    Hugs
    Tandy

  6. lilaclover30

    lilaclover30 New Member

    i am the "senior" of this group of dear people. I have nothing to add as far as help but do investigate FMS. it can make your entire body hurt!

    it is a discouraging type of suffering. i have yet to find something to help. i have had 5 seasons of treatments from the Pain Clinic and~~~~~~~there is still intense pain.

    i won't go into anything too deep but welcome to the board. You will find suggestions, hear from those who are crying for sympathy, and we all love each other and beg for help/

    Keep coming back to us.

    Gentle Hugs(((((((((0))))))))

    Joan
  7. TAM

    TAM New Member

    HI Gretchen,

    I must tell you right off your a very strong women.

    You certainly have been threw your fair share of health problems to be so young, you poor thing, my heart goes out to you.

    I really wish that you had a better support system at home after all when your ill daily you need understanding supportive people by your side. well i'm glad you joined this group, there are many people here who are understanding and kind and will be here to support you.

    I would go get tested for fibro and if you have it educate your husband by making him read all the bad things that happen to you with fibro and maybe he will realize its for real, and be supportive to you.

    I wish you better health and lots of happiness. Take care, Tammy.