Now What? I have Lost The Battle!
 

So here come's my sob story. I am in so much PAIN that I do not even know if I can take any more! I am on Temazepam,Topamax,Clonazepam,Furosemide,Zolpidem,L orazepam,Methadone,Morphine Sulfate IR 30mg,Morphine Sulfate CR 100mg. I went to see my DR. who is a regular Dr. who see's everything. So he said there is nothing more that I can give to you. Everything that I am taking is not even touching my pain! So he gave me a referral to see my neurologist (but I can't get in untill after Jan/18/2010! I got a referral to the pain clinic. (when they where sending in my paper's for that one that told me it takes up to 3 weeks just to hear from them! Also they said remember it is the holiday's! I need all of you'r prays just to hold on that long! This pain is such a monster! I hope the rest of you have a great holiday! All My Love Breezy! :hug: :Heart::santa:

Breezy,
We ALL feel your pain.
We all know that there is nothing that can compare to the "type of pain" that RSD presents.

You must understand, that while I'm on a fair cocktail of meds (because I have lots more than rsd), but methadone is my painkiller.
There IS NO magic bullet! NOBODY, that posts here regularly, save a few miracles, get to walk away pain free. (I've yet to see that).
The most we can expect, is to help regulate the pain.
For all the meds I take, I still have useless, helpless days.
Would you stop taking your meds?
Go with them, until you see the specialist, there IS hope!


I agree, I think you need more of a specialist, because you seem to be getting the "shotgun" approach.
But, you must relax, and if you're inclined, pray.

You will be helped.

I'm sorry for you Breezy, you sound very depressed.
Have a little fun if you can.

I've had this bastard for 26 years, and, was undiagnosed for 7.
HELL.
I know it well.

My prayers will be with you!
Keep the Faith! And, have patience....

Help IS on the way!

pete

hang on !
 

And sometimes you hafta go beyond the 'take-a-day-at-a-time'......literally.,
Take an HOUR at a time....or a MINUTE at a time.....
Like i was sharing w/a friend in a private message, it really helps keep the depression at bay to do simple 'silly' things.....look on uTube at "laughing babies" or "funny puppies"..... it's hard NOT to laugh. And it does help the time go by.
Not taking your pain 'lightly'. BELIEVE me. I DO know pain.....besides all the meds, it IS a constant battle for sanity......always rubbing on topical crap.....
massaging.....hot baths......curling up in a ball and cry.....it SUCKS. :Bang-Head:

Saw your thread and my heart went out to you so thought i'd drop this note....
and YES ----> prayer DOES help..... It sure don't hurt anyway.

Keep hangin on......more options will eventually present themselves.

Caring :hug:

Rae

Hi Breezy!

We all understand you here and are sympathetic to your pain. Please, just know that you are strong and not weak. I learned a great trick for when the pain is uncontrollable. My P.T. taught me how to breathe. Its called "Chest Hollowing" and you simply lie on your back, inhale from your nose. First, fill up your belly with air, then your lungs, then try to fill up to your collarbones. It's tricky at first, but once I got the hang of it I really got alot of relief. You can hold it for a few seconds, then exhale through your mouth. It's wonderful to focus on breathing, as it calms you down and makes you concentrate on something other than the pain.

You are in my thoughts. I hope things get better for you really soon.

Kim

[QUOTE=Breezy55;597095]So here come's my sob story. I am in so much PAIN that I do not even know if I can take any more! I am on Temazepam,Topamax,Clonazepam,Furosemide,Zolpidem,L orazepam,Methadone,Morphine Sulfate IR 30mg,Morphine Sulfate CR 100mg. I went to see my DR. who is a regular Dr. who see's everything. So he said there is nothing more that I can give to you. Everything that I am taking is not even touching my pain! [QUOTE]

Dear Breezy,

I'm really sorry that you are having such a hard time. The transition to cold, wet weather is awful.

I saw Dr. Getson last week. He is an extremely well known doctor specializing in RSD. When he saw that I was taking Methadone AND and opiate/morphine med for my pain, he said that it was counter-intuitive. You are apparently supposed to take either one or the other, but not both together. So he suggested that I drop the methadone from my line-up of meds. In his opinion, the two products work against each other for pain and you end up with less pain control you would otherwise.

IMHO, my pain has increased since eliminating methadone. But our weather also just turned a lot colder.

I just thought I would pass on what he told me, since you have both meds in your line-up like I did.

Another suggestion - if you are able, try to get outside and walk in the fresh air as much as you can. Bundle up, and find a friend (or grab a pet), and walk. I love it and it takes my mind off my pain for a while. For me its been the very best therapy since I got sick over 3 years ago.

Pleease take care, XOXOX Sandy

Breezy,

Like Kim mentioned, there are some drug combinations that just don't work well. It isn't always a matter of bad interactions, where the combination will cause problems. That's the type of thing the pharmacists check when filling a script. But knowing when a combination will reduce effectiveness is much more complex. That's one of the reasons I see a pain management clinic. I could easily get my GP to write me a script for a pain killer, but the Pain Management people have more experience with all of the different cocktails.

It's frustrating to have to wait to see a specialist, I know. Hang in there, though.

Kim was suggesting some simple meditation. That can really help in getting past some of the hard times.

I hope you get some relief soon.


Mike :hug:

Hi Mike and Breezy --

I've been with a Pain Mgmt Clinic in Boston for a year with a practictioner that I was under the impression was an excellent pain management doc. I have placed a lot of faith in him and trusted him, I thought he was good. So I have to admit that I am profoundly disappointed to just find out now about the Methadone not going with the opiates and morphine that I have been prescribed. How could it be that this is just now being disclosed to me? Plus, my head hurts much, much worse the last few days. I'm more than a little bit of a mess at the moment. In short - I am so confused. In desperation I might take some Methadone in a little while just to see if it will help me.

I like Kim' suggestion of the breathing a lot. Thanks Kim. I also like the meditation tapes that are available at the UCLA and UMASS websites:

http://marc.ucla.edu/body.cfm?id=22&oTopld=22
http://www.umassmed.edu/Content.aspx...d&itemid=41254

Take care everybody. XOXOX Sandy

I just wanted to take the time to thank all of you for you'r input on my current situation! It really means alot to me. I am not usually a downbeat person. However for some reason this pain has really done a number on me! It does help to know that all of you are out there to comfort me in you'r own way's! I guess sometimes what makes it so hard is that I live alone. With this RSD pain and with winter here it is getting so hard to do anything by my self! Even where I live in my apartment I have to walk up 20 strair's untill I get to my living space. You should see me when it's about -20 and I have about 10 bags of food to unload! Huff,Huff,Puff,Puff!! I hope that all of you have a Great Christmas! Pain or no pain at least we are still here! Always Breezy :hug: :santa::Heart:

try to relax stress is not good for this dragon , it will feed on it i have had this dragon for 31 years i now what you are going through but find something that will give you peace and try to relax do what you can do, try not to over load your system (yourself) god bless hang in there you are in my prayers

Dear Breezy 55,
First of all you need to move to a lower apt. I lived on the third floor apt when this first happened 5 years ago and I had 21 step up and down on one foot with crutches. It was a mess. I went from a two bedroom on third floor to a one bedroom on the ground floor. I slept in the living room in my bed and my son slept in the bedroom. I could not handle the steps any longer. See if you can get a lower apt. It is too much to walk those steps.

I am sooooo sorry to hear you are in sooooo much pain. I hear ya and just like most all of us have been there too. I know it got bitterly cold in the North (I live in PA). You have to do something to take your mind off this monster or it will eat you up alive. You sound just like me in the first year of this mess. I was taking so much the hospital even overdosed me and sent me home like that...I still don't remember 4 days at all. In the last year or so I found that I pray alot more and breathe like someone already suggested and visualize me walking along a warm beach to try and lower my pain. I know it is not the magic wand but it does help when all else fails. I have to read for a few hours before bedtime in the evening until about 1 am or else I get so depressed all I do is cry. You must keep your mind on other things or you will indeed lose it. I will keep you in my prayers and hang in there. Do what you can to keep yourself going and at least once a day try and laugh at whatever you want to. It lowers your pain a bit. Turn on a silly movie or TV show and let the laughter go.
I am alone too so I can understand how you feel and my family doesn't get it either so I do the best I can with what I have. I have a dog and cat and without them I would be in the funny farm.
Take care,
kathy d

I know how you feel, but you havent lost the fight! Dont ever give up on yourself! Come on you can do it. I do have one thing to ask though. Have you tried Physical therapy? That works for me... Or have you tried the SCS?

Re/UpDate/With/Battle?
 

Since my last post thing's have not changed alot. However I did get in early to se my neurologist. We did talk alot,then he had about 14 tubes of blood drawn from me. Then I am to come back to have another EMG and a Cat Scan. There could be a possibility of having a liver biopsy done,which I am not looking forward to doing! Then my regular Dr. sent a refferal to the pain clinic. When I was in there office and they were sending my refferal the girl that was doing told me that most of the time it takes at least one month before you even get a call back from them! I am hoping that my neurologist can speed thing's up some how? In the meantime it still is a day to day battle just to fight off this pain! Once Again I wanted to thank all of you! Without this wonderfull place I would really have Lost The Battle! Love To All Of You and have a Blessed Christmas! Always Breezy! :hug: :Heart:

Family....
 

Family..I say.. we have such a wonderful group to friends here on this site to turn to...we are hand picked friends..thats even better than family...we share the same concerns and fears..we know just how to comfort eachother! I raise my glass to each and everyone here as I know I would be lost with out you... RSD will not beat us as we need each other... Bless you all..and thank you... Try to keep smilin...:grouphug:

It usually taks a while to find the right combination of medications to make this tolerable. People have side effects and some drugs just don't have the expected result.

Hang in there.

I am so sorry to hear the amount of pain you are in. It makes life very tough. I don't know if you have tried changing your diet. Inflammatory foods such as red meat, potatoes or the night shade vegetables makes pain worse. My daughter who has rsd notices right away when she has eaten something that is inflammatory. I hope this helps. Any other questions PM if you want more info.

Diet is very important to me as well. Good and bad keep changing but I should avoid sodium nitrite found in all preserved meat, salt, sugar, and overeating. I have to keep my salt level very low and very stable.

There are some herbs and the like which I find beneficial; Ghingko Biloba, vitamine C, tea, lavender oil (applied to skin), grapeseed extract, and cod liver oil. Avoid stress. Eat fresh fruits and vegetables.

Try to maintain a routine and find ways to distract yourself fromn the pain. I laughed when the doctor said to distract myself but actually he was right. This is one of the most powerful weapons.

Mostly just hang tough.

I'll tell ya,
that dam headline you got goin, is VERY eyebrow raising!

We have SO many trial cures, huh? and of course, most none of them work!
GD' it!

That's not my usual line!
WE must fine our most BEST line of attack, because WE must ATTACK this Bear Monster of a disease!
Not a cool thing to do by our selves.
Not the coolest thing to do with our younger children.
Not the greatest thing to do with a spouse.
F/them, often.

Not a great thing to do with the Easter Bunny!!!!


Who we gonna do it with?????


Can someone get back to me on that????








Pete

xo

WE are going to do it with ourselves and our kids and our spouse! If you need help with something ask. It may not be the greatest thing in the world to do but at least you wont be alone all the time. At least you can find what works for you.

Thanks snowboarder, very kind!

I'm SORRY how I wrote, when I said F/them. It meant Forget them, nothing vulgar. (This weather, I'm having such difficulty typing, or even clicking).
My point being, that it's our disease, not theirs.
I know how frustrating it is, for me.
But, I can't escape it! They can!
They can't be held hostage, to "save us" from something that our doctors don't even know how to cure! It's frustrating as anything can be, for a loved one to be with us constantly, feeling helpless and useless. (Especially during a flare, which seem often in NOV, DEC.)

I was more or less replying to what "Keep Smilin" said.

There's a lot of support here.
It's a good thing.
Sorry I made it sound negative...

pete

I know but you cant give up! In some ways it would be good if it was negative. If your angry let it out! Even if it is 'our' disease its not always fun to go at it alone. I still am doing it alone and I have suffered for it. I know other people can get away from the pain even though we cant. I know that, but its better to have someone there than to forget about them and try to do it on your own

I go this alone pretty much everyday... Almost 6yrs now. I know that is nothing in the big picture of this monster.

I have lost more battles than I can remember... The war... now that's still yet to be determined.

Do I want to give up and walk away from this hell? Sure... many times everyday. Why don't I?? Because I'm more worried about the hell and pain it would put family and friends through.... but it is there and the thoughts, plans, actions are very real.

I had no medical insurance and was unable to seek medical treatment for the last four years of this monster... I recently obtained medical coverage and am now beginning to find out what this monster is doing to my body... It's scary...but I have to keep going for the same reason as above---if I quit that's how family will remember me...

I don't have many friends and RSD has taken many away... many people in my life just can't handle what this monster is doing to me and who, unfortunately, has changed me into... I am not the same person I was before this monster entered my life.

I had to move back in with family as living alone is not a viable option at the present time.

Going from a very active, physically fit woman to someone that has to ask for help to get out of bed... if no one is around... It often takes many minutes to hours for me to push myself up... just to have to crawl to the bathroom and then lift myself up. Not a pretty picture I know... but it's real.

I read everyone's stories and continue to be amazed at how everyone here comes together to support each other... With this I know I am not alone...

I don't talk much on this forum... but I do read and care for all of you... my brother's and sister's who also fight this war.

:hug:gentle hugs to all...
Abbie