I need some help!

Discussion in 'Fibromyalgia Main Forum' started by gracienay, Jun 13, 2003.

  1. gracienay

    gracienay New Member

    HI, I don't usually do message boards, but I just ran across this by mistake (fate?). I have SEVERE CFS/FMS and have tried many "things" to try and help, but haven't found any relief yet. I feel so bad that I have been out of bed for 3 out of the past 20 days (and that is because I HAD to. I just can't move anything on my body and can't hold my eyelids open. I am about to give up on it all if I don't find some help.
    I just read the book, "America Exhausted" by Dr. Conley and it sounded pretty promising, so I called to see if I could get an appt. w/ him, but he is not accepting new pts. I was wondering if anyone out there is familiar w/ this book and if you know of anyone (anywhere in the US) that follows the same type of protocol that he (Dr. Conley ) follows. I appreciate your responses and your time.
  2. Shirl

    Shirl New Member

    Hi Gracie, welcome to our world. Glad you decided to post.

    I am not familiar with the book, must be one that I missed.

    I am sorry you are having such a bad time, so many of us are in the same board.

    I have FM only, but do get that awful fatigue, but it does not last longer than about three days. So I can relate to how you feel with that all the time.

    Maybe someone here can help with a good doctor for you. Plus you can go to the top of this page to; 'Doctor Referral' list, or call; 'FM Network' 1-800-853-2929. They should be able to help you find a good doctor.

    Again, welcome to the board, and hope we hear from you often.

    Shalom, Shirl

    [This Message was Edited on 06/13/2003]
  3. gracienay

    gracienay New Member

    Thanks so much for responding. Dogdazed, he does have a website. It is www.cfids.com. It gives a real good explaination of his book and his treatment protocol. I have just received "From Fatigued to Fantastic" and another one you mentioned, but haven't gotten to read it yet. I am just looking for a physician that will test me for all that Dr. Conley says they test for, but the biggest response that I get is a laugh in the face or am treated like I am not intelligent. Anyway, thanks for your response!
  4. gracienay

    gracienay New Member

    Thanks for your response, Shirl. I appreciate the phone # for the FM Network and will give them a call. Also, that book that I mentioned is an excellent book and you may want to add it to your CFS/FM library. It tells great detail, but is easy to read and understand at the same time.
    Thanks, again for the welcome!
  5. Mikie

    Mikie Moderator

    Welcome to our board. Dr. conley's book is the first one I ever read when I knew I had FMS and CFIDS. I called and was sent a patient package; at the time, two years ago, they were accepting new patients.

    There are a number of docs around the country who specialize in our illnesses and run practices similar to Conley's clinic. I will tell you that in my two plus years on this website, I have heard of only one or two people who benefitted from going through one of these clinics. Most are very expensive and would be worth it if one could get one's life back, but it doesn't seem to be happening for those who go to them.

    I read as much as I can and present my findings to my own doc who is willing to try things. I have had excellent results using this approach. I finally found a good specialist here in town and he told me that everything my PCP and I had been doing was perfect. I have dramatically improved in the last two years, so I likely will not see one of these "experts" unless I hear of one who is getting outstanding results.

    Love, Mikie
  6. Jen F

    Jen F New Member

    Sounds like you are in a severe flare.

    You need physical and emotional support right now. Do you have that at home?

    From personal experience I would say that someone who is sick as you are right now needs specific physical help: someone to bring you filtered water [maybe with a bit of fresh lemon squeezed in to aid in absorption and reduce acidity in the body -- yes reduce acidity] and healthy meals of fresh steamed veggies and non-processed meats, fish, beans, etc; supplements that those of us with CFS have found helpful, and someone helpful around to ease your mind that your minimal needs are being met until you get back on your feet.

    Do you have someone to do that?

    If not, perhaps arranging that would be helpful.

    I don't know where you live, I assume the US and I am in Canada so I don't know how it works where you are, but there might be community support services avail to you that you aren't aware of.

    When I was seeing a psychiatrist [who accepted CFS as a physical illness, perhaps because he had/has a serious illness himself..and now can no longer practise...] and he heard what I was saying about how I could not do my housework and I was afraid of my apt becoming filthy and getting bugs, and how I was going to have to move if I didn't get my dis benefits approved, but that I didn't have the energy to pack and that I was freaking out with the stress:

    HE PHONED THE LOCAL COMMUNITY CARE ACCESS CENTRE and arranged for me to get homecare, visits by a mental health nurse and visits by a social worker -- all for free.

    Now, the free homemaking services in this province are severely cut back due to government funding cuts, and are very limited, but at the time were a godsend. I really needed the help and was very grateful to this doctor. I didn't know these services were avail to me, and many others in my province didn't/don't know it either.

    Maybe you don't have this system in your country and/or maybe you aren't low income like I was [which is why it was free] but I bet there are SOME services avail for you. Perhaps a good doctor might have some suggestions if you can manage to make it out to see someone.

    Or if you have some money, maybe you should contact a nursing service provider, or homecare provider and pay to have someone come to help you.

    Currently, I have homemaking assistance that I pay for, but it's cheaper than professional cleaning service because I use an agency that is for seniors or disabled people. This agency is partly funded by the government and by donations in addition to my reasonable fees. I also order Meals on Wheels to help me with my food requirements. Here in my area if you are low income, you can get that at least partially subsidized.

    I hope you can find some help in your area. Because when you are that fatigued, you can't do much for yourself, but you need to nourish the body to improve your functioning sooner.

    Also, try to remember, that when you are feeling that fatigued and/or sick you may think that is the way it will always be and begin to feel hopeless, but it will get better.

    Please try to get more support for yourself and nourish your body as best as you can.

    Glad you found this board.
  7. gracienay

    gracienay New Member

    Thanks for the info about the clinics, Mikie. I wasn't sure if I should try and make an effort to travel somewhere to go see someone who specializes in this or not. They did say that I could possibly see a Nurse Practictioner there (in Dr. Conleys office). It would be several hours of driving for me as I live in Missouri and his clinic is in Michigan, so I just can't decide what to do. I would be so very disapppointed if I went all that way (I don't ride or travel well-it totally exhausts me)spent a lot of money, and come home exhausted and broke, with no answers.
    May I ask what type of treatment you are on?
    Thanks again for your input, I appreciate it!
  8. gracienay

    gracienay New Member

    Thanks, Jen! I appreciate your kind and thoughtful words of encouragement. No, I don't have a lot of support or help. I have a wonderful husband that helps do some things when he can, but he has his own business and works many hours. I haven't thought of looking to the outside for help and I may have to. I have 3 children and I get them fed, but it is such a struggle. I find myself leaning on the counters while fixing meals because I can hardly stand up. I do the same in the grocery store by leaning over the cart to support me. I know this looks odd, but it is the only way I can get through there. Grocery shopping wears me out so bad that I usually have to take a little nap in the parking lot before I drive home.
    I am sorry for "dumping" on you, but I feel that I have dumped and dumped on my husband so much that he doesn't hear me anymore (and I don't blame him). I don't have a mother that I can go to for help either, as she has Alzheimers and can't carry on a conversation. I have to take her to her doctors visits, fill her pill boxes, pay her bills, etc. and I just wished for once I could talk to her and tell her how I am feeling.
    Jen, I could go on and on, but I do want to thank you for responding. You just made me realize that I need help from outside sources. I would love to find a friend that has this same illness, so we could visit with each other and understand what each other is going through. I think that all of my friends have labeled me as being unsocial, depressed, and lazy because I won't go do things with them. There is nothing I would rather do than to have the energy to go visit my friends, but I just can't. They don't understand any part of it. It is so hard!
    Thanks again, Jen!
  9. Jen F

    Jen F New Member

    Wow, you do have a lot on your plate with having to care for children and take your mother to appointments, etc.

    I'm glad you are realizing you are going to need outside help until you start to improve/get the rest you need, etc.

    Don't say sorry for dumping, I think that's one of the reasons the board is here! We are here to support one another.

    One of my best experiences since I got CFS was the day I first spoke to someone else on the phone with this illness. It was so amazing. I had called my local CFS organization to find out about support groups. AFter talking with this person I joined a small home-based CFS support group and it was SO WONDERFUL and helpful. I didn't have to worry about these people judging me, or not understanding what the illness was like. I was lucky enough to form some new friendships as well, had things in common with most of the members and though I am now in a new support group, we still keep in touch and get together occasionally socially. Plus I can call them if I need to talk. I don't have quite as much in common with my new support group, mostly because I am quite low income and most are, no WERE, on disability from good jobs. But now there area couple new members on social assistance. We tend to have a little more of the same issues to deal with. Though now I can relate a little more to both groups since I have inherited a bit of money which is in a trust and I can use for medical expenses. Otherwise, when you are on social assistance, it's hard to try the treatments for CFS as most are alternative and not covered on health plans.

    Anyhow, Try to find a support group near you! And some help in the home!

    Take care!

  10. TrustGod2003

    TrustGod2003 New Member

    I do believe there is hope for all of us. I am 34 and have had fibro .cfs and myofascial syndrome for 10 years but I will not give up. I do have support, but sometimes I need more understanding when in comes to family knowing that I must take med sometime to feel a little better. My goal is to be off of meds. I know of something that you would definitely want to look into and maybe others. It is called NUCCA. The website is www.nucca.org At first I told my cousin who know s a doctor that does this NUCCA which chiroropractos do it, that I was not interested until I read more and it iis much different, not popping,cracking,etc. They do different x-rays and you must be skilled and be certified to do NUCCA which works with the upper cervical part of the neck. THe doctor that I will be going to does head x-rays and other x-rays. I spoke with someone with another condition and she is 100% better after 6 treatments. Everyone is diffewrent but it is worth a try. Please look that site up and look up NUCCA. I am not sure if they have one in your are certified but maybe they will have someone close to you. Also, a product that I would recommend is Primal Defense and the book by a young man called "Patient Heal Thyself". Sorry, his name is spelled Jordan S. Rubin Please look him up on the net. I think with these two combinations Nucca and his book things can get better. E-mail me if you like at DWigg54545@aol.com I think we need to be here for one another. You are not alone.I was typing pretty fast so sorry about any mispelled words....Tonya
  11. Mikie

    Mikie Moderator

    Sorry, I missed seeing your question. I've been in a bit of a flare lately.

    I am on antibiotic therapy for chronic mycoplasma infection. I am just now getting into antiviral treatment for a Herpes-family virus, most likely EBV or HHV6. I take Klonopin to help with sleep, anxiety, tinnitus, and sensory overload. I am on the Guaifenesin protocol.

    In addition, I take Synthroid, Estradiol, and Progestin. I take supplements including ImmunePlex undentured whey protein powder and colostrum sold here. I also take probiotics, the Jarro-Dophilus sold here is the finest I have found anywhere.

    Love, Mikie