Can i ask a question please? Please respond!!!.

Discussion in 'Fibromyalgia Main Forum' started by juliejo, Feb 28, 2006.

  1. juliejo

    juliejo New Member

    Hello everyone.
    I used to come on here for support and advice from other Fibro/ME/CFS sufferer's and post when i felt able.
    Now when i come on i am so confused when i sign in with all these prayer request's and posting's that have nothing whatsoever to do with FM/CFS that i am finding it very difficult to read the thread's let alone post anything.
    Don't get me wrong and i don't wish for one minute to upset anyone with religious beliefs etc. I am a Roman Catholic by the way but do my own praying in private. My choice!!.

    At present i am in so much pain and have been housebound for many months i rearly need someone to talk with.
    I feel so alone right now as my family i now feel are taking me for granted and i have had enough.
    I am now having to use my wheelchair alot as the pain in my back and legs in unbearable and i cannot stand at all now.

    They keep telling you that FM dos'nt get any worse. Well i disagree as i have definately got much worse lately.

    I can't take any pain meds as they all react very badly and believe me i have tried the lot.

    I am waiting to see another Rheumatologist but that could be months.

    I rearly don't wish to offend anyone on here but needed to vent a little as at my wits end right now and in need of some support myself.

    Julie jo.

  2. 69mach1

    69mach1 New Member

    i don't know how t really respond...i don't personally like to discuss relegion to i am not...but i do know one of the moderators posted something earlier yesterday to all of the members, so you may want to read is from sharon the moderator

    i have started taking vavactil for depression and it helps with some of the pain...i am higly sensitive to meds myself...i have founds some relief not completely...

    just try try again...and in the mean time call your dr..and see if they will call in a prescription w/o going to see them...

    [This Message was Edited on 03/01/2006]
  3. Mikie

    Mikie Moderator

    If those requesting prayer would use the prayer thread. It was created so that those needing prayer could do it all under one thread and those praying could find people to pray for in one place. What those needing prayer don't realize is that their prayer requests, when posted alone, often get lost in the shuffle. The prayer thread gets bumped back up to Page 1 all the time.

    I think when people need prayer, they think they need it now and don't want to wait til Thurs. night's Prayer Nite. What they do not understand is that the prayer warriors read the thread every day and pray all week long.

    As for the OT posts, well, we used to have our Chit Chat Board, but it is no longer available. It was so nice because it was like a friendly little coffee klatch where we could tell jokes, talk about family problems, trips, etc. It was like having a roomful of friends. Would you believe it, though; some were offended when asked to keep OT posts to the Chit Chat Board. They wanted one big board for everything.

    This board is very big and moves too fast. It is difficult to have to scan three pages of posts several times a day just to keep up.

    I'm sorry things are going so rough for you right now. I pray that things get better. Take good care of yourself. Yes, things can get worse, but I have found it's more like a roller coaster ride. Things eventually get better again. Just hang in there until they do.

    Love, Mikie
  4. Cromwell

    Cromwell New Member

    I think if one thinks about the power of group healing then one can come to terms with prayer threads. One does not have to be religious I am not particularly religious-I would call myself spiritual, but not belonging to any religion per se. Yet I usually send prayers, as I hear the need from another.

    Jung, the famous Anthropological Psychologist and independent thinker, believed in the power of the "collective unconscious". This worked, he believed, for both collective positive and negative thought.

    There may be many prayer requests that are really asking "remember me"-I think that is from Sampson, and maybe if we asked to be remembered then people could be free to respond in their own way, by saying thinking of you or praying for you as to each person's choice.

    This may solve the dilemma here. What do others think? Moderators?

    Love Anne C
  5. bunnyfluff

    bunnyfluff Member

    I am not happy with all of the "my husband is a lying scum-bag" posts type of things, either. Sometimes it seems like there is just a lot of dirty laundry being aired, too. I'm not sure that is what this board was meant for.

    Good to hear from you again, Julie. Sorry you are feeling so bad these days. Have you tried any of the new drugs like Neurontin? I stopped Elavil and started Topamax and got good results as far as it took away the ultra-sensitvity I had on my skin and flesh. Before it felt like bear claws ripping open my flesh if someone rubbed their hand across my arm.

    A lady from our church had excellent results with the Neurontin, is why I am asking. She had terrible back & leg pain and was homebound, and she is able to work part time now.

  6. illnative

    illnative New Member

    Dear Juliejo

    I couldn't agree with you more. I am a 50 year old mother of 2 from central Illinois diagnosed with fibromyalgia 2 years ago. I am having the worse time yet with it this winter. Have found the pain in my back to be debilitating at times and cannot find medication that doesn't cause stomach problems, keep me from doing what I need to do or claim to be habit forming. I often wake in the night in such horrible pain I have to get up and sit on the sofa. Like you, I pray in private.
    I also have headaches and tend to fall asleep easily when I am having a flair. This prevents me from driving, as you can imagine. The lack of sleep effects my efficiency, and I must say that I have been suffering from depression for the last few months which I've never had before. My family has heard this so long they are immune to it and often expect me to perform as usual. I really think that someone who hasn't suffered with chronic pain has no idea. I didn't.
    I'm hoping the longer days and warmer weather may help us somewhat. Your symptoms sound more inconvenient than mine. I've always looked at this condition as entirely inconvenient. I hope you find the help you need. My rheumatologist is touted as the best in the region. All I get is presciptions.
  7. grannycfs

    grannycfs Member

    Hi Julie,

    I do not have a lot of Fibro pain, but am more afflicted with CFS. I help run a support group in Charlotte, NC. One of the biggest problems seems to be finding a doctor with the knowledge to effectively treat these disorders.

    Most people don't know that education is available to any doctor seeking knowledge to better treat his/her FMS or CFS patients. I've read at where there are conferences available for education on FMS and at for education on CFS.

    We need to pass this along to our healthcare providers. If they show no interest, then you need to move on to another doctor. Of course, this is a difficult thing to do but necessary because these disorders are not going to go away. Sometimes its necessary to travel long distances to find the right doctor and this too is not always possible.

    But these are the realities. I am proactive in that I periodically write to my senators and congressmen about the lack of appropriate medicare care for people with these disorders.

    One of the best newsletters available to keep abreast of Fibromyalgia research and the latest in treatment is from Fibromyalgia Network at . From that website you can subscribe to their newsletter, which is the very best in my opinion for practical, no-nonsense information.

    Finding a good support group near you can sometimes be very helpful in finding the right doctor. That information may be available to you from the two organizations I mention above.

    Hope this helps a little, Granny in Charlotte, NC
  8. juliejo

    juliejo New Member

    Thankyou to you all for responding.
    I did'nt read about the moderators posting re-praying thread and wish i had done before posting so i hope i havent offended anyone.

    My lower back, for now is a bit better this morning, that is until i do "anything". Then the whole cycle start's again.

    Hope everyone is'nt suffering too much today.
    Julie jo. x
  9. PVLady

    PVLady New Member

    The board has changed so we do get other topics here. Sometimes you will see "OT" in the subject line. That would be one you can skip, because they are saying "off topic".

    Yes, there have been many changes but we have seemed to adjust along the way.

    I am sorry you are having a rough time right now. You say you have been housebound for many months with pain in your back and legs. It is possible to have someone just take you out for a car ride when you feel up to it.

    I know how easy it is to stay in, I did it myself for years. A couple of years ago, I started getting better - but up to that point I was almost bedridden (for years).

    I learned some real lessons, mainly the inactivity made me worse. I am not saying to exercise - but we need more movement than we would get inside the house. (that sounds funny I know)

    I wish you would discuss the pain meds that did not work for you. I don't know how you can stand it with no pain meds. Perhaps a good pain specialist could try different combinations you could handle. The drug I took that helped me to start getting better was MS Contin. I never intended to stay on it long, and as it turned out I only took it for 9 months. That nine months enabled me to start moving around again. My pain was stopped cold.

    No one is expected to live in pain. The quality of your life is worth getting pain relief.

    From MS Contin, I transitioned to a drug called Subutex which is a mild opiate and continues to control my pain. The only other pain med I take is Tylenol Gel Caps and a small amount of Ultram.

    It would be very helpful if you could put info in your bio. If you are in California, I have a excellent pain specialist you could see.

    Hope you are feeling better. Please write back and let us know how you're doing.

  10. smiffy79

    smiffy79 New Member

    the lady who refered to 'my husband is a lying scum bag'

    we come here for support and to support and when something absolutly soul destroying happens to one of us i know i am always prepared to offer what i can even if it is just a friendly word and a smiley face its better than ever feeling alone yourself or having anyone else feel alone.

    i am not refering to the prayer posts, i am not religious so why read them? you dont have to julie jo, just skip it or start your own thread but if ppl find comfort in prayer then thats fine by me.
  11. Adl123

    Adl123 New Member

    I'm sorry you are having such a hard time. I, also, can't take most meds. Last week I decided to try Chinese medicne and accupuncture. I found a Chinese Dr./Acupuncturist who is also a very open, humble and skillful person. I've only been to him once and I'm better already.

    I don't know if this will work, but it is just about my only chance. He also prescribed some herbs and told me to integrate them into my diet slowly. we'll see.

    Good luck,

  12. kalley167

    kalley167 New Member

    We can't sit and dwell on this DD all the time. And I feel that this place is like a family and this is all some people have to talk to someone else or get support from. Sometimes it helps even with this dd to be able to discuss other things. If you have a specific question regarding this dd post it and it will get answered. Just keep bumping it. Most people answer them if they can help. But we do have to remember that this site may be someones only connestion to other people so OT is gonna happen. I thinks its a great place. I do like the new prayer thread and they should all be posted there for prayer requests. At least we have someplace to ask for prayers and the power of prayer is great. It has helped me.
  13. Yucca13

    Yucca13 Member

    Hi JulieJo,
    We all need some moral support with these painful syndromes. The pain, isolation and depression that accompanies these diseases can be overwhelming at times. I know, I've been there a lot.

    It took a very long time for me to find a doctor who doesn't have a problem in trying many different kinds of pain meds and treatments. He is a physiatrist. There were many medications I just couldn't take either. I am on a couple of different meds now and it usually keeps me mobile except when the weather changes drastically, or I do too much in one day and my neck, shoulders and hips wig out. I find it very hard to put up with the pain when it is stabbing and relentless. It is difficult to walk (even in the house) or motivate myself to do much of anything useful. I hate feeling useless, so have to do a lot of self talk to not sink in the pit!

    As far as not getting support from my family, I've been whining that my two youngest daughters decided to throw me away a year ago (that is how it feels). The youngest wrote me a three page letter with all of her greivances. I so regret telling either of these girls how I was feeling because they used it against me. Families can be a great blessing or they can be very hurtful, I've found. I've come to a point of acceptance about the situation. There really isn't anything I can do because they don't want to hear my response. My self-esteem has suffered greatly though on top of feeling rather useless at times. I do have a husband, a son and another daughter who are terrific, so I am very fortunate.

    I guess I would say to try very hard to not let them get to you if they take you for granted. Many people tend to be very self-involved. I've always said also, that if we had a visible or terminal disease we would get much more respect - not that I would desire that kind disease!!

    I sure hope the Rheumotologist has some answers for you soon. I have found that getting the pain controlled helps quite a bit.

    Remember, you have friends here and all you have to do is post and you will receive whatever support we have to offer.
    OOOO :)
  14. chopindog

    chopindog New Member

    First of all I think that there has been more prayer threads because of rainfyer and how sick she is. There is usually not so many prayer theads going on. But I think that this is a special circumstance!

    I think that if you look, the prayer threads are only a few of many other treads. You don't have to read the prayer threads or respond to them. But at the same time I really don't think they are doing any harm.

    As for the husband threads, and other negative threads referring to frustration with friends and family. I think that in some ways that is what this board is for. So many of us can't discuss our true feelings with our family, and sometimes people need to be able to just vent. I know that they may be venting in a non positive fashion. But lets face it, sometimes life just isn't positive, and this illness causes so much pain and frustration. I just think that this should be a safe place to vent. Sometimes people just need to get these feeelings out.

    If others don't want to read or respond to these posts than they don't have to.

    I hope I am not coming off as rude, because I see where Julie Jo and others are coming from. I understand about wanting to keep the board a possitive place, where we are not just whining a crying all the time. But I also think that everyone is due to have a bad day every once in a while. A day where they just feel so fed up, and I think that is what we are here for. To support peple on these days.

    But if you look at other posts, there are plenty that are not religious or negative. There is still plenty of posts based on educating each other, and talking about the actual disease.

    So I say just accept others. Accept that some have bad days where they seem angry and depressed. They are writing so they can work through their feelings. And as for the prayer threads I just don't see where they are really doing any harm. Just don't read them if you don't agree with them. But continue to post your threads and your questions, and your concerns. We are all different, but we all have one common bond and that is these DDs. The DDs effect every aspect of our lives! In so many ways we om this board are the only ones who can really understand what the others are going through, we ned eachother!!
    Love and understanding, Joy
  15. JLH

    JLH New Member

    Have you tried Cymbalta and Neurotin? I take them both and they helped me more with my fibro and pain that anything else that I have tried.

  16. mylilcherub428

    mylilcherub428 New Member

    that you really need someone to talk to I think that is what most of us need.So i dont really see whats wrong with posting about a lying scumbag or whatever. Why can't we just give them the support they need.
  17. bct

    bct Well-Known Member

    The Moderators of the board have requested all prayers be on one thread == The prayer thread.

    For some reason or other , it seems some members are choosing to disregard this. I feel that this is being disrespectful to the people on the board in general. I can sense that other members feel this way too, and want the prayers to be in ONE PLACE for the convenience of all the members, and to facilitate the usageof the board.

    I am so sorry you are in so much pain, and hope you are able to find relief.

    Soft and Gentle Hugs,

  18. ldbgcoleman

    ldbgcoleman New Member

    I think the reason we get off topic here is this DD affects so many areas of our lives. It's not just that we have pain it's that we have pain and our husband doesn't beleive us. It's not just that we may have insomnia It's that we have insomnia and our friends don't understand. It's all woven together.

    If you open up here about your illness the reactions and behaviors of others are naturally part of it. If someone feels like they can open up about their illness here then maybe other problems as well.

    I guess the OT topics get my mind off of my illness and the prayer and other topics are easy to avoid if everyone will write a good topic line. The solution is simple if the thread says prayer or OT or My husband is a lying scumbag, just don't read it. Skip to the next post.

    I don't like picking apart others posts or what should or should not be posted. Who decides what is relevent and what is not? If it eases someones mind and makes their life more tolerable to vent about their husband then fine with me. If it takes someones mind off of their pain to talk about American Idol go for it.

    My humble opinion! Lynn

    [This Message was Edited on 03/03/2006]

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