Has anyone seen the CFS Documentary

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BluegrassTennessee
New Member


Date Joined Aug 2007
Total Posts : 2
   Posted 12/23/2007 11:55 PM (GMT -7)   
 

Post Edited (BluegrassTennessee) : 1/26/2008 1:35:16 PM (GMT-7)


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 12/24/2007 7:45 AM (GMT -7)   
Bluegrass, thanks so much for your post. You described so well what so many of us with CFS go through: docs and others who don't understand, struggling to find the right meds that will help. I know I seems to crash anytime I switch meds or go off a med. I think my body must be super sensitive to that kind of thing.

I've never seen the documentary you mentioned here, but after hearing about it I'd really like to see it. I'm glad you gave it to your docs. Sadly, I think the vast majority of people out there still seem to think that CFS is not a "real" disease and that a lot of it is psychological.

Hang in there and I'm glad to hear that you haven't given up hope. I haven't either. I used to be very into fitness and especially running. Before I got sick I used to do long distance running and was in the process of training for a marathon when I got sick this last time. I should tell you that after my initial diagnosis of CFS in the early 90's, I recovered after a few years and was able to resume an almost normal life. The only difference is that I got tired more easily than most people and I crashed every once in a while and had to spend a few days in bed. But it was during that remission or recover time that I got really into running. Now not only has my CFS returned, but I have lupus on top of it. I still visualize and hope for a remission from both CFS and lupus.

I'd like to know what meds you've tried and which ones have worked the best for you if you don't mind sharing. I have trouble finding meds that work well for me. I have an awful reaction to most antidepressants so I can't take any of the SSRI meds.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 12/24/2007 5:08 PM (GMT -7)   

BluegrassTennessee

Hello and Welcome to Healing Well.  I am Kitt and I just dropped in to welcome you.  Also to wish you a joyful holiday season.  You have given yourself a great gift by joining this wonderful group of members of the CFS Forum.

As you can see they are warm and caring and more than happy to share.

If anyone is interested in the film you speak of, just a reminder they can access Amazon through of Resource Center and HW does get support to help keep our site up and running this way.

Again Welcome to Healing Well.  We are glad to have you with us.

Kitt


 
Moderator Anxiety ~ Panic Disorders
*~* Not a mental health professional at all *~*
Dx: Anxiety/Panic, Depression, GERD, Osteoarthritis
*Wife of a Crohnie*
******www.healingwell.com/donate***
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~
 


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/3/2008 3:38 AM (GMT -7)   
I'm getting that movie today. Right now I'm dx'd with Multiple sclerosis, but last week another doc pulled that away from me again, resulting in limbo land. I suffer from the pain you describe here and the narclepsy as far as no warning,,bam i fall over on the couch, i can hear all things around me but am too fatigued to get my eyes to open, Anyone feel that way ever?

bluegrass, You can do all things thru Christ who strengthens you. I recommend something I'm doing which is a little book full of scripture, more importantly scripture about healing to be quoted outloud. Giving voice to God's own perfect word. There is power in this. As God told abram that he is now Abraham, each time abraham said, "I am Abraham" he was essentially saying what was not YET manifest but that which was PROMISED...and we know>>>that by his stripes we are healed.
quoting truths is a very very powerful thing. This book (im sure u can get it at a christian bookstore) is small and set up for healing verses to be quoted and prayed over your body. You've tried herbs? Try this instead!!!!!!! I see that you have great faith, now this is a way to channel it, and it is lining up God's own spiritual truths with your own voice outloud!

The book is: God's Creative Power (gift collection). by Charles Capps.

I'm sure your aware that , such as a man thinks; so he becomes. Also that by his stripes we are healed and even further on....that....he told us that we'd do even greater things than him. i.e. healing. Words are powerful. Speaking negative produces after it's kind, speaking faith produces after it's kind.

As far as medications, there are some that might help. Please never feel I'm able to advise you on medications. I'm only going to say what has been more helpful than provigil to me and some of the ones you've mentioned.

for muscles? bacoflen is wayyyyyyy better than cyclo(flexeril) ..talk about immediate no ache!!!!! 1/2 of a 10 mg will stop aches within 10 minutes. If you decide to try this be sure to tell your doctor and make sure you know that if you remain on it continuously you must be weaned off.

As far as narcotics, i have them and sadly to say the truth...they do not stop the pain. I know alot of us hold back away with the thought that if it gets worse we can turn to them. Remember that narcotics only will relieve you until tolerance is built , which can happen in as short of a time as 4 weeks. Then your left with upping the dose or having no further help from them. (they mainly help for bone pain)..and even that is limited ok? I'm speaking from first hand experience and I've had my doctor's try them all. At one time they tried fetanyl which is for terminal cancer patients, i felt zero relief of the pain. It is a combination of medicines that you will find more helpful. Not one strong med.

You need to find the correct compliment of medicines that you can reliably take and at set amounts. I see that you've tried this many times. Do not give up.
Speak with your doctor about baclofen, at 10mg it will stop your aches and cramps immediately. My ankle will cramp and turn to the right in a most painful , intense draw and if i take 1/2 of a 10 mg bacflofen , in 10 minutes my ankle is then fine. I told you that example so you'd see just how fast and good it works. That is a major low dose also!!!!!!!
That med can go way up in mg's, but since we aren't speaking about spasticity with you, 1/2 of a 10mg will do 4 times the work of flexeril, and provides a sleepy effect as well.

Neurontin- great med for all types of pain. Was origianlly for anticonvulsant, but used for nerve pain (many dont know they have any nerve pain until they use neurontin and find out what pains leave, thus finding out which was nerve related). Keeping in mind that muscle and bone and tendons all move around nerves, sometimes pressing on them.

Cymbalta- has many properties of neurontin only it adds an antidepressant with it. Which you've used wellbutrin with success but cannot continue that med because of what its doing to your ears.

I only listed what I know has worked for me for these diff types of pains. They didn't almost work, they worked. I still remained in pain as nothing seems to stop all of it. but relief is a great thing yanno?

Simply ask your doctor about these meds. They are quite often used in many numerous unrelated diseases/disorders.

Siminet , I've tried. It's great for restless leg, however I see no other benefit. If your thinking of it in regards to parkinson's I dont think you'll get the desired results. They dont move from a wide variety of reasons that aren't quite the same as CFS reasons.

Would you all mind If i post on this board now and again? I'd love to support you as many of my symptoms cross over and match with yours and vice versa.

I hope that I can be welcomed.

Hippi? I'm so sorry to hear that you also have lupus:(...its one they are checking me for now. That and Sjogrens as well. I guess alot of these things bring friends with them huh? (other disorders)
Your in my thoughts-all of you are!!!!!!!
The fatigue that I get just comes on like a cloud. My eyes go closed and I cannot open them at all..i feel helpless and like im being dragged into a coma, not a good feeling at all.

The pain..sheezo...pain with laying down? Ive never undertood how i get so tired i have to laydown then sufferpain when my body is laying down, more severely than when sitting.


Anyway, id love to read your posts and also offer anything that I may find that can support you all!
 
Oh! I have a girlfriend at my church that suffered from CFS about 10yrs ago. At the time I had no clue of what it was , so like many I wrongly thought it simply meant she was tired. I wish I could go back in time and of been there for her. The great news is she's active in church again. Leads the wed women's bible studies. Exercises, and has spells of fatigue but never what it once was. Her solution? Prayer and many praying for her, and faith:)

Thanks
Kiera

Bluegrass? Elavil is a first line treatment for pain for Osteo/ RSD/and tons more! If you can take ssi's then it's def a pain reliever for you!!!!!!!


Every day brings us closer to what we reach for .........in all things.
 
Kiera

Post Edited (Kiera) : 1/3/2008 3:48:39 AM (GMT-7)

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