Feeling Very SAD NO HOPE :(

Discussion in 'Fibromyalgia Main Forum' started by Fibrotears, Jul 15, 2006.

  1. Fibrotears

    Fibrotears New Member

    I still cannot believe that I have to live with this vaginal and rectal spasms!!

    It feels so unreal. I always believed that somewhere out there someone or something will be able to cure this.

    But now after seeing over 30 specialists and the professor it is dawning on me that the doctors simply cannot do anything. They don't have the knowledge to help me.

    I'm the ONLY person in South Africa with this!!! Out of 47 million people, I get this!!

    I'm so sad deep inside of me. I cry all day, get anger fits where I throw things.... It is still so unreal. I'm grieving my health that I lost. I just want to be the old me.

    I'm handleling the FM fearly well but cannot handle the vaginal spasms at all!! It hurts SO MUCH.

    My whole life is in front of me. But I don't know how to go on, survive, life with this pain everyday for the rest of my life.

    Why is this happening?

    I have to study next year, get a degree, start working to support myself. I can't forever stay at home with my parents. They won't live forever.

    What am I going to do? In 2004 when I went to university, I couldn't cope with the pain and keep up with the work-load then. How am I going to be able to do it next year?

    My life is such a mess!!

    I'm so scared about my future. One thing I've realised, is that FM gets worse over time. No matter what the literature says. Mine is getting worse. If this vaginal spasms get any worse than this I don't know if I will have the strength to go on.

    Please pray for me.

    Fibrotears
    (Anja)
  2. carebelle

    carebelle New Member

    I donot know your history with this problem would you tell me exactly what you are going thu and I will try to do research to find you help.

    Do not give up .There are reasons for everything and there are many people here that care .

    I do agree that fibo gets worse it has with me also.My physical pain has gotten so bad I have pain 24-7

    I will be praying for you this week I hope you will be open to my prayers.Sometimes things get to the very worse point we can stand and then they get better.

    You sound like such a strong women .Please tell me your story and when this happen to your health I would like to understand more.
    I pray you find a day with no pain .You have found friends here.
  3. Pianowoman

    Pianowoman New Member

    Anja, Don't give up hope. I know you have had a really difficult time and you are scared. I believe that there will be an answer for you. Just hang on. There are people praying for you and that is very powerful.

    Do take care and I'm glad you can come here and let it out.

    Kathy.
  4. smiffy79

    smiffy79 New Member

    take a break magazine followed the story of a lady with the exact same thing and she has had to learn to deal with it. she says she is exhausted all the time and has to wear loose clothing.

    why not contact the magazine explaining your problem and i would think they would ask the other lady if she would like to make contact with you. the magazine is a good one which really does care about ppl i'm sure they would be happy to help you.
  5. darvick

    darvick New Member

    I know it must be hard for you. With my back problems, I get sciatica and it feels like a corn cob up you know where. Sometimes i put a hot moist cloth there and it eases it up. Have you tried muscle relaxants? Hope this can be of help to you. Don't ever give up though!!!! I've had this DD with cronic back pain etc. and there are days we all feel like giving up here. You have our support this board is wonderful. We all care and hope you can find relief, what ever it takesl
    Hugs
    Darlene
  6. hugs4evry1

    hugs4evry1 New Member

    I have some hope for you...

    This is a large group here and maybe someone can come up with something that will help.

    I was wondering about supplemental muscle relaxers like magnesium? Do you take this already?

    I'll wait until you list what you're taking for Stormy...

    Hugs hon,

    Nancy B.
  7. Fibrotears

    Fibrotears New Member

    I'm 21 and the rectal and vaginal spasms started in August 2002. It was a sudden onset. There after my FM symptoms really started to 'show'. I have 24/7 pain and it never gets better. Not even applying warmth helps.

    I went to numerous specialists and followed numerous treatments.

    I used almost every anti-inflammatory medicine on the market. Over 20.

    I used anti-depressants like Trepiline, Tofranol, Cilift and Cymbalta. None helped. It only made the spasms even worse.

    I also used Adalat, Catapress and Tegretol. Again it made my pain worse.

    I also used muscle relaxers: Robaxin, Lioresal, Spasmend, Buscopan, Bevispas, Librax, norflex etc.

    Botox was injected twice intra-vaginally into the triggerpoints. It didn't help.

    Last year I had 4 pudendal nerve decompression surgeries. It worsened the pain.

    This year a I used a combination of very high doses of Tegretol 600mg a day , Pur-Bloka 60mg a day and Trepiline 20 mg a day. Only AGAIN made the pain worse.

    Lignocaine and DepoMedrol was injected intra-vaginally over 25 times into the triggerpoints. It helps but is not permanent and hurts too much to do it often!

    The pain is a spastic pain and sometimes accompanied with a sharp stabbing pain.

    I've considered biofeed back but the physical therapists in South Africa are not trained to work on a tense/spastic pelvic floor. Only trained to work with weak pelvic floor muscles. So thats not an option.

    FM symptoms: Chronic fatigue, muscle aches, several TP's, low back pain, chemical sensitivities, insomnia and then the vaginal and recatal triggerpoints.

    I use Valoron 50mg 4 times a day. DicloHexal 50mg T one twice a day. Dormanoct at night to sleep. USN Multivite one a day. Caltrate Plus two a day.

    Yes, I used magnesium for a very long time. Didn't help either.


    Fibrotears

    [This Message was Edited on 07/16/2006]
  8. IntuneJune

    IntuneJune New Member

    One more thing to try, if possible.

    Myofascial release can treat pelvic floor dysfunctions. If you log onto myofascialrealease which is a John Barnes web site, you can learn more about this.

    Also you can sign up under their listserver (you will be overloaded with emails however, when I was using this, I used a separate email account from my regular emails.) Post as a patient, then give your details and ask your questions.

    A phone call to the center may cost quite a bit. John Barnes trains therapists world-wide so there MAY be someone near enough to you to try this. In your email to the listserver, you can mention your locale.

    The science behind his treatments has helped me a great deal. My MFR therapist approaches it clinically. John Barnes can get preachy and into deep forgotten events.... I have had nothing come up during treatments in my past and I have had many treatments. I feel wonderful afterwards. But with fibro, the fascia tends to nail itself down again.

    I have learned to help myself a lot, I learned a lot about what causes my muscles pain and what helps through treatments.

    Therapists who do internal work are specially trained in that type of work. I have not had internal work so cannot elaborate further.

    Taking a look will cost you nothing. Good luck.
    Fondly, June
    [This Message was Edited on 07/16/2006]
  9. kjfms

    kjfms Member

    I am sorry you are having such a tough time of it. Please do not give up hope.

    Here is a site which may be of interest to you. I hope you will check it out it is new treatment being done at Stanford University.

    You may know of it already but I thought I would post it anyway.

    http://www.pelvicpainhelp.com/


    Sending you good thoughts,

    Karen :)
  10. rockyjs

    rockyjs Member

    Anja, although I'm sure I have never experienced the spasms to the degree of intensity or frequency you mention, I have dealt with it and understand what you're describing.

    In my case I seem to make too much of a prostaglandin called PGE1 which contracts smooth muscles, and although there are many smooth muscles throughout the body, I have always felt the extreme spasms in the vaginal and rectal areas. It takes your breath away and really is quite unbearable. I think it is comparable to what a man feels when he is kneed in the groin.

    After years of research and experimenting on my own, here's what helped me:

    Cut back on the foundational nutrients that increase PGE1. For me that means the only oil I tolerate for eating or cooking is sunflower oil. Ingesting a small amount of olive oil will set off the spasms, and even getting it on my skin will allow me to absorb it and they start up. The same for other longer chain fatty acids like flax and fish oils. I don't eat any fish. Butter or ghee is okay, but I avoid it for other reasons.

    Another foundational nutrient is zinc. Even a tiny amount of zinc will push my body to create more PGE1 and with it inflammation and spasms. I worked with a prostaglandin researcher to see if we could find something other than cortisone to help with this. I found that an amino acid called L-Histidine would help get rid of free zinc in my body and control the production of PGE1. It was amazing what a difference it made. I have taken it daily for about 15 years now. I usually only need 250 mg and during allergy season may up it to 500 mg. For each 250 mg I can tolerate about 15 mg of zinc in supplements.

    Evaluate the oils you are eating and rubbing on your skin and you may have your answer. There are genetic or enzyme defects that can cause this.

    Jan
    [This Message was Edited on 07/16/2006]
  11. hugs4evry1

    hugs4evry1 New Member

    I was trying to do research on vaginal spasms and found a medication that helps some called Urispas.

    Did any of the docs help you to understand why you're having these horrible muscle spasms? Most of what I read was from Vaginismus... or at least those are the sites that kept coming up.

    Has this been discussed?


    I have hope for you, but you have been through so much already. Please don't give up. Maybe just having someone here who understands may be able to help you a bit.

    As Stormy said, maybe some probiotics will help too. Some things that confound doctors are often helped by starting at the beginning.

    Hugs,

    Nancy
  12. TAM

    TAM New Member

    HELLO Anja,

    My heart goes out to you sweetie, I agree with you that fibromyalgia does get worse over time i know mine certainly is getting so much worse.

    But i can't even imagine the type of pain your suffering with. I can't believe that on top of fibro(which makes you feel bad enough) you have to suffer with vaginal spasms.
    Oh my goodness i wish i could do something more for you then just pray for you, you poor dear.

    I imagine you are very sad deep inside, i know i'm depressed because of my chronic daily pain, but you oh my i can only imagine how very depressed you are. It's a shame that out of all the specialists you have seen that not one of them could help you, now that is just wrong. I
    know this won't help you much but know your not alone honey and i care about you, i can't believe all that you have to suffer with.If i could reach threw the computer and take all your pain away i would do it in a heartbeat.

    Are you on any medication for your sadness? I'm on wellbutrin and cymbalta and it does help out with the depression of coarse it does'nt all go away but at least it calms you some. If you are'nt on any meds for that maybe you should try something.

    I know when i get to where i can't stand the pain any more and know i don't have the strength to go on thats when i start thinking of my son, i would'nt do anything to hurt him and i love him so much so i think of him and then i find the strength to go on no matter how painful and hard it is i can be strong for him. Sometimes when you can no longer be strong enough for yourself you need to think of someone or something you love and that will give you strength. At least try to do this.

    I understand you grieving for your health and you would love to be able to do everything you could do in the past. It makes me sad and angry too,i can't even scrambble my son an egg for breakfast anymore!! So thats when i make myself stop and be thankful for the things i can still do and i don't fuss over what i can't do anymore.

    I really hope you start feeling alot better, i really pray that your vaginal spasms ease up i actully hope they go away completely. Like i said i can only imagine what horrible pain your in, so when your having a really extra bad day try to come to this site and post all your problems i'll be here for you along with so many other caring and understanding people. Your not alone, JUST KNOW YOU WILL BE IN MY THOUGHTS AND MY PRAYERS. Take care! Tammy

  13. smiffy79

    smiffy79 New Member

    thats great :) i hope this will help bring you relief anja
  14. zion1971

    zion1971 New Member

    you are a strong woman. God Bless You!
  15. mme_curie68

    mme_curie68 New Member

    Anja -

    I had your problem until I went to this woman for biofeedback therapy for vulvovaginal vestibulitis and bladder spasms.

    I had two biofeedback sessions with this woman and followed Dr. Elizabeth Stewart's Diflucan protocol and anti-yeast guidelines (The V-Book) and have not had a problem since.

    Consult with this woman (Holly Herman) - I know she can help you. If you can't get the help you need in South Africa, perhaps you can come to the states...

    Here's the link to her website:
    http://www.hollyherman.com/



    Hugs,
    Madame Curie
  16. Cromwell

    Cromwell New Member

    I read somewhere that botox can stop those spasms.

    I hope you can find out about that. I have no idea how true it is, but I know they can also use it for other spasms.

    Love Anne Cromwell
  17. phoebe1

    phoebe1 New Member

    I am so sorry to hear how you are suffering, and being a south african myself I know that we have limits regarding the medical help we can get.
    But please do not give up hope, this must sound impossible after everything you have been through, but you have to keep believing that there is help for you.
    This believe and your faith is what will carry you through.

    Have you ever been for accupuncture? Or have you ever been to a naturopath? If you haven't tried these options I strongly feel that you should.
    They know things that doctors don't.

    When you lose hope always remember this: The will of God will not take you where the grace of God can not protect you.

    Ek sal vir jou bid!
    Phoebe
  18. Pianowoman

    Pianowoman New Member

    Hi Anja,
    I was just reading an article in the NFA on-line newsletter about the guai protocol. Apparently, Dr St Amand includes vulvar pain syndrome along with CFS/FM MPS and Candida. This may mean that you could get relief using the guai protocol! There is lots of info. on the board about it and if you decide to try it, you should get Dr. St Amand's book.

    It's great that I see so many people giving you good ideas. There is hope!

    Take Care
    Kathy.
  19. carebelle

    carebelle New Member

    You really should print all of this advice here on this thread and give your Dr's a copy. They may be willing to try some of these things to get more information about your problems and they may find ways to help you get the meds or treatments . They can also gain from the knowledge all of these wonderful people have written you here.

    There is hope ,when people care and so many of us here do. Please write us back as soon as you can and let us know what you are doing and what is helping you.

    You will stay in my prayers.My Daughter just had a baby and a women from your county ,SA is studying to be a Physician Assistant here. She shared in the birth of my grandchild. My Daughter felt very honored to share this with her ,for her education and we hope and wish you and your country very good health care.
  20. AcappellaMusic

    AcappellaMusic New Member

    I have had fibro for 13 years and I know how you feel, I really do. I live with my parents too and I have thought about that to,but I will continue to look for a cure. I have known a couple of people that have gotten better with the fibromyalgia. You have to continue to research. There is a man named Dr. Marmostein in Houston and I read an article he has on his site concerning someone with fibromyalgia and she is better. I also believe in colon cleansing and then putting the right nutrition and eating the right nutrition. I really want to get better and it is about time for me to do these things. We can do it together. These post are wonderful so keep coming back and if you need to post again for encouragement do so.....God will get you through, I know this from years of experience.Fibro Hugs

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