[89danboy]

Hello everyone,wanted to ask how many of you deal with being bed riddin in bed or the couch 24 /7 due to the fact that your body feels awful just lying there with all your body aches and the unbearable chronic fatigue ,it's so hard to explain this to anybody but ,I deal with all the body temperate changes cold sweats and what I am feeling is agony,I suffer just lying there all day,I get little relief here and there where I am able make a sandwich or go get the mail.if I try anything that involves concentration and movement for a few minutes it puts me in a flare up that last for a few hours .my heart rate jumps up and I get cold sweats and heavy breathing.i get this if I try to cook a burger and side dish on a day where I'm able to do this it puts me in that kind of flare.almost the feeling of a sugar attack and anxiety attack.i get a lot of anxiety with just the thought of having something to do.like knowing I have to go to a Drs oppointment that week.it stress me out not knowing how I'm gonna feel that day knowing I will be up rite in a chair for 2 hrs sometimes ,I'm so weak feel so bad all the time I have to lay down or its agony trying to sit uprite.my Injuries are shattered right calcanious"heel" compound fracture of right wrist and broke back,I have pain and a lot of symptoms in these areas,but this is not causing my disability .its everything I mentioned,the constant debilitating fatigue,constant body temperature flares ,major stomache aches,the suffering body aches and pains,the anxiety I get on any type of pressure put on me,like have to go to your Drs today.i haven't been to a restaurant,movie,to see relatives or friends been to anybody's house or mall in like 3 years now.ive had rsd since 05.took me a year to rehab my injuries and made it back to work a year later.for the next 2 1/2 years I was getting major symtoms and flare ups .finally bye nov of 2008 I couldn't get out of bed..it took 3 years for a diagnoise .i went thru hell befor I was givin medicine prednisone for the major inflammation in my body.iknow a lot of this is coming from my brain the limbic system I believe causing the feeling of no pleasure,feeling lousy brain fog ,can't remember anything,depressed for what became of my body.i would like any of you dealing with this disease that has you laying on the couch or bed 24 /7 unable to do anything cause of the way you are feeling .what causes you to be this way.id like you to describe what causes you to be this way.its so hard to explain to people how we feel and why were disabled.i would really appreciate how you feel and your experiences with dealing with it.i am truly blessed to have a group of warriors to talkwith that understands you or us.btw these are my meds,methadone 80 mgs oxy condone 30 mgs xs 2 a day for break thru pain ,remeron for my stomache 45 mgs x1 ketamine nasal spray 10 mg sprays ,take 20 sprays a day approx . Prednisone usually once every 6 weeks for 5 days,just had an inpatient ketamine infusion last month ,5 day 24 hrs x 5days. got no relief from it.looking into the hyperbaric chamber as my next treatment .i also use a tens unit,for my back ,although I just started using on my head to try and reset my limbic system.thanks for listening .i prey for all of you

[Enna70]

Wow....sorry how this monster is treating you. I know how sad it feels knowing two hours has passed and you are still just sitting there....I try to move because I am hurting any damn way. But that's my mentality.... Damned if I move damned if I don't. Low Dose Naltrexone has helped me with the hot flares....but as I mentioned I seemed to developed a tick.
Again I understand... No matter what I do orally my enamel is eroding....
So thanks for keeping us updated and thanks for keeping us updated and keeping up the fight.

[PurpleFoot721]

89danboy,

Things sound awful for you. It sounds like you have tried quite a few treatments and also sounds as if none of them are working too well for you.

I am no where near as bad as what you sound like , but for the most part, I am lying in bed or in my easy chair most of the day. I do try to do pt from time to time, but whenever I do, I end up not being able to do anything at all for several days. Lately I have been having a hard time even getting around the house, tire very easily, have a hard time breathing if I am up too long, having flares in my ankle, back, shoulders... and of course the most recent, tremors in my hands that make it impossible to do anything, but part of that I think is caused by not doing anything mixed in with the methadone, (5 mg 3x a day), I am on. I can say that I am lucky to have a loving husband who helps out so much that I feel as if I can never tell him enough how much I appreciate and love him.

I hope you have someone who is able to help you out from time to time. It is certainly a terrible thing to live with and go through alone and without help.

[89danboy]

Originally Posted by Enna70

Wow....sorry how this monster is treating you. I know how sad it feels knowing two hours has passed and you are still just sitting there....I try to move because I am hurting any damn way. But that's my mentality.... Damned if I move damned if I don't. Low Dose Naltrexone has helped me with the hot flares....but as I mentioned I seemed to developed a tick.
Again I understand... No matter what I do orally my enamel is eroding....
So thanks for keeping us updated and thanks for keeping us updated and keeping up the fight.

Hi enna, I totally understand your Enamel eroding out,I've had 13 teeth removed and the ones I have look horrible , I had perfect teeth.i just bought new teeth inserts tops and bottoms, they fit over your existing teeth.my teeth look amazing now. Cost about 1000$ you never have to leave your house , they send you the mold for your teeth mold, you send it back , two or three weeks later they are sent to you.the name of the company is brighter image lab.if interested.check out there site,befor and afters pictures

[happygirlpa]

Hi danboy! You sound absolutely miserable. I remember what its like to be bedridden and in constant pain. Pain is exhausting and some medications can make you tired too. I remember when taking a shower was an accomplishment and the only thing i managed to do all day. I was scared to do anything that would cause a flare. I didnt know when i would flare so i pretty much avoided doing anything and never made plans. Having an appointment to be somewhere caused so much inner turmoil. My doctor put me on cymbalta. That helped alot with depression and anxiety. It helped calm the panicky feelings inside. Eventually, baby steps after baby steps, i was able to broaden my world. I am not back to my old self but i am not on the couch 24/7 anymore. I still need downtime every day and a couple days each week i dont leave the house. Like Enna mentioned, youre gonna hurt whether you stay home or go out. You might as well go out. Even just a short ride in the car to see life. Do you have a dog? I love my little one and he needs to go out a few times which is therapy in itself getting me off the couch and outside a few minutes at a time. Sometime i would just sit on the deck a listen to the birds. They make me smile. Sounds like you need to do something that makes you smile.

[LIT LOVE]

I'm definitely most comfortable lying down and spend the majority of time in bed or reclining. I had spread into my lower legs a few years ago, and have been struggling to get back in the habit of exercising or even going for short walks. You have to try and find that sweet spot of doing enough, but not too much, and try and build your endurance.