Losing it....
 

Normally I keep a lot inside... but right now I am losing it.
My pain is way up... No one can see it... I hide in my bedroom in the dark most of the time and 99% of the time I only come out when no one is around. I can't take the pain anymore. It even hurts to breath.

I guess why I am writing is because I want to thank everyone here for all of their knowledge and support for each other but I believe it's my time to say goodbye to everyone... I just can't go on.

Good luck to all and I wish you well.

Please hang on- we are all here for you - talk it out , vent , yell, scream - anything you need to do.

Are your meds not working for you right now?
What about any other things that might help you to feel better?

I'll PM some numbers to you.

Maxed out on meds....

I've tried everything I can think of to get the pain down....


I can't take pain medicines due to severe allergic reactions to everything we've tried.



I'm just tired of it all...
Pain keeps getting worse...sharper, feels like my bones are going to explode and skin is on icy fire.
Depression just keeps getting worse...been at the bottom of the well for a long time and it just keeps getting deeper. :( :Sigh:

Please dont go, your posts are so encouraging to me. I also live in my room and never come out. I thought I was the only one like that :o

I too have thought I couldnt take it anymore, but I realize there are others that need and depend on us. Especially the grandkids. You need to tell your doctor how bad the pain is, even if you have to wake him/her up tonight.

Think about it, there has to be people in your life that cannot live without you, and would seriously hurt them. I can tell you it will seriously affect me.

love ya much
allen

Abasaki,

(((((((((((hugs))))))))))))

I live with chronic pain everyday too, so I know and understand how hard it can be sometimes.

You mentioned that you are allergic to several pain meds - do you mind if I ask which ones you have tried and what type of reaction you have?

I ask because there was a member of the chronic pain forum a few years ago, and her doctor thought she was allergic to pain meds - but it turns out that she was not allergic to the meds, she was allergic to a filler in the meds and by taking benadryl or claritin with her pain meds, she was able to get relief without allergy.

Another member used to have a stomach reaction to meds and the doctor labeled him as allergic - and again, it was not an allergy but a stomach problem that was able to be treated and then he had no more "allergy" to meds and was able to get relief.

I'd like to post these Hot Line numbers here on the forum.

If at any time they are needed they will be here-

Suicide Hotline numbers
hotline numbers in one place that is easy to find and easy to access quickly in an emergency situation.

Phone numbers-

1-800-273-TALK
1-800-273-8255

1-800-SUICIDE
1-800-784-2433

Deaf Hotline for TTY users -
1-800-799-4TTY
1-800-799-4889

Teen Hotline-
1-888-747-TEEN
1-888-747-8336


Canadian numbers are listed by Province on this site-
http://suicidehotlines.com/canada.html

Other International hotlines are listed by country on this site-
http://suicidehotlines.com/international.html


Websites-

http://suicidehotlines.com/

http://suicidehotlines.com/national.html

Just Updating

Liz is awesome at remembering things like that- She has a great knowledge of many meds too.
It would be a good thing to look into with your doctor.

Oops, hit the send button too quick, sorry about that.

To finish what I was saying in my last post -

There are other pain management treatments besides medications. I am sure you have tried some of them, but with new studies being done everyday there is always something new -- such as a brand new pain med that was just released a month or 2 ago called Opana. It's a narcotic pain reliever that is different from other narcotics (I forget what makes it different, I just remember that it is different).

Have you tried Opana?

I don't know a lot about RSD, but I do know that a lot of the pain associated with it is nerve-related pain -- have your doctors ever tried to treat you with a combo of nuerontin and methadone? A study done last year showed a high success rate for nerve pain patients when using the 2 meds combined. It was a breakthrough study because using either medication on it's own produced only minimal relief, but together produced fantastic relief.

I think I remember a member here getting Ketamine infustion for RSD that provided a lot of relief and was headed towards a remission. I wish I remembered who it was and the final outcome, but I do remember seeing great success stories during the process.

My point is that there are always new things to try, new treatments being released, new studies being done, new clinical trials looking for people to join -- there is always hope for possibility with every day. Tomorrow could be the day some scientist in a lab discovers a new pain treatment.

((((((((((hugs))))))))))))

Liz

(((abasaki))) very gentle hugs

please stay with us. hang in there.

i am another in chronic pain. i hide it too abasaki. so i understand how lonely that can be. when you hit a 10 on the pain scale, but those around you think you are at a 2. very lonely. but why bring them down and upset them right?

you can tell us, we understand how it feels to not get relief. but we can also help you look for answers. maybe something that hasn't been tried yet. just knowing that you are not alone.

i'm available to go into the chatroom if anyone wants to.

<----insomniac monkey here.
down fall of pain. :o

((((((Abasaki)))))),

I just saw your post and it tugged at my heart :(

I don't know RSD. I'm familiar with fibromyalgia -- years of pain with no good treatment.

I just wanted to offer this up as another suggestion:
http://clinicaltrials.gov/ct/gui/act...ecruiting=true
http://clinicaltrials.gov/ct/gui/act...ecruiting=true

I was in the original clinical trials for prozac over 20 years ago. Got my meds for two years. And mini-therapy -->> someone to touch base with frequently but NOT having to go through that psycho bull-ships anymore. Been there, done that, got the t-shirt.

The good thing about clinical trials is they are aware of more recent research. There's someone THERE that is trying to help. I know sometimes when you have complex, untreatable 'thingies', the medical community starts to just keep you in the "appointment loop" -- come in, see how you're doing, send the bill to the insurance company.

You know, Abasaki, we get this idea that we're HELPING someone by hiding what's really going on with us. Spouses want to be able to help. Children should know that everything is not all sunshine and puppy dogs -- they need to see real life examples of how to cope.

Come out of that cave of yours and let the people around you help you. If they're not willing to help you, they shouldn't be around you. You don't need negative energy around you.

I'm speaking based on my own life -- spinal arthritis, over 15 years of fibromyalgia, borderline personality disorder.

The BIG THING in my life, though, has been trying to cope with a lifetime of chronic clinical depression and trying to not follow in the same footsteps as my younger brother who committed suicide when I was 22 and he was 21. I've had a lifetime of living in hell and trying to learn how to cope with it.

It NEVER PAYS to hide your feelings. I used to ICE MYSELF. When the nurse at work saw me after my first psychiatric hospitalization, she told me my face use to look like ICE. No ships, I was trying to freeze myself so I wouldn't have to feel anything. The way that The Universe works is either you go through it now or you go through it later -- you are going to go through it. Can't beat The Universe.

Come out of your room and let the beautiful things -- love and soft animals and pretty flowers and magnificent trees fill your soul. There is a reason that you are here. Please stay here.

BIG HUGS.

Barb

I'm still here...

Meds: my memory isn't too good but I do remember fentanyl patches...oxycontin...and I know I've tried several others with the same bad reaction... lungs, throat, face swelled up... thought heart was going to explode. We tried benadryl and several other antihistamines but they didn't stop the reaction... i can't remember what they gave me that finally got it to stop... i just know my doctor was more than concerned and told me that I was never to take any narcotic pain medicine again and gave me a list of others that weren't narcotic too as they would likely cause the same reaction.


I've tried so much... nerve blocks worked for a little bit but then I had major flares as soon as they wore off.... I've tried biofeedback...it worked for a little while but as the pain got worse... it stopped. Seems like the only thing that works is Chiropractic (Very aggressive style) and acupuncture...but my doc has a super busy practice and I can't stand to be in there when they run different machines that vibrate....I can be on the other side of the office and I know exactly when they start one up... the pain shoots through my feet and across my body like someone doused me with acid and set me on fire. In order to keep the pain in check I have to go in a few times a day... everyday. I haven't been able to go in as much because of this so I can't get the pain down at all.

Ketamine and HBOT were on the list for the next things to try but it's a $$ thing and there is none.

I currently take Lyrica--450mg x 2/day. Cymbalta--30mg x 2/day. Miacalcin once a day... i don't think that's spelled right.


I have no spouse, no significant other, no kids.... I have brothers and sisters but never see or talk to them... I live with my parents who could care less if I am here other than I am a drain on their bills-- and I don't eat much--no appetite...don't use much electric--only tv on most of the time--no lights... don't use much water---sorry to say but bathing is hard so I usually just wash up. I have only 1 friend... others disappeared shortly after I was diagnosed and I haven't heard from them in nearly 3 years.

I am worthless... empty... lost... hopeless.

I used to be very active and athletic... softball, rollerblading, martial artist, running. Now I struggle to move.

Disablity has been applied for but we all know that game...
Work Comp settlement is pending... It's a mess and that game is just as bad as a disability.


I'm tired and have nothing worth going on for...

Abasaki,

I did some google searches about narcotic allergies.

I found this page - http://www.bccancer.bc.ca/HPI/Cancer...CancerPain.htm

that has this quote -
I don't know if you have tried methadone, or if it is on the list that your doctor gave you of "meds to avoid" but from what I have read, those who are allergic to narcotics are often NOT allergic to methadone.

Did your allergic response happen during the first dose of the medications? or did it occur later on? I ask because I found this page - http://www.hopkinshospital.org/healt...d_allergy.html

Which seems to suggest that it is an allergy if the reaction happens later (after taking it for a while) but it is an idiosyncratic reaction if it happens during the first few doses... the page also says that if a person has an idiosyncratic reaction that they do need to avoid the offending medication and related medications - but according to the first link Methadone is not similar to other narcotics, so maybe that would be different?

I would not want to suggest something that might harm you, I honestly do not know much about allergies and reactions - but from what I read just now on those pages seems to make some suggestions that methadone is different from other narcotics and methadone is less likely to cause allergy and reactions.

((((((((hugs))))))

I will type more in a minute - nature is calling - be right back

I also found this -
http://opioids.com/buprenorphine/pain-manage.html

It is about a medication called Buprenorphine, which is often used as a medication to treat drug addicts (similar to the way methadone is used to treat herion addicts). Recently studies have shown that this medication is useful as pain reduction medication. It binds to different receptors in the brain than traditional narcotic medications, so maybe you would not have a reaction or an allergy to it? It's certainly worth printing the study article and asking your doctor about.

More about Buprenorphine and pain management-
http://www.ncbi.nlm.nih.gov/entrez/q...&dopt=Abstract

http://www.stoppain.org/pcd/content/...Management.asp



I'm not trying to overwhelm you with medical information... I just want to try to point out some new options and new treatments. Maybe you have tried them already, maybe not. Maybe they can help reduce your pain, maybe not.

But if you have not tried them, it is definately worth talking to your doctor to see if they would be possible.

There is always hope. I could do google searches all night about new pain treatments - and I will if you would like the information - but mostly I just want to show you that there are options available, there is hope, there are new treatments, and new things are discovered everyday.

((((((((hugs))))))))))

Liz

((((((Abasaki)))))),

http://chocolate-moose.p5.org.uk/MIN...ding-hands.gif I've spent my whole life fighting depression. I *recognize* depression when I see it and hear it in others. *YOU* are depressed. Cymbalta stinks for deep depression.

I want you to do something for me. Read this and then answer a question:

The question: WHY is this enough for you?? I wouldn't wish a life like this on my worst enemy. If you give up and do not fight for MORE, you are saying I ACCEPT ALL OF THIS, this is ENOUGH FOR ME, I want NO MORE.

I cannot believe that. I cannot.

I * KNOW* you want more. I *KNOW* you want better. I *KNOW* you want relief. I *KNOW* you choose life.

Abasaki, do you have a psychiatrist?? Not a psychologist or psychiatric social worker -- a psychiatrist who can prescribe medication if necessary?? A psychiatrist who can work with you to discover WHY you think you deserve so little.

You are at the bottom of huge pit of depression, Abasaki. I've been there enough times to recognize it. You need to take active steps to get out of it.

There are people here: http://www.recovery-inc.com that will show you how to cope with living. They're everywhere in the world. There's minimal cost -- maybe just for having the janitor clean up after the meetings. You can get the books at the library. Please go to a couple of meetings. Share a book with the person next to you. Sign up to have the newsletters mailed to you. See if it helps.

You are worth SO MUCH MORE than what you are accepting for your life. Please...fight for more.

http://chocolate-moose.p5.org.uk/MIN...dinghands1.jpg

Barb

Hey, Abasaki -

I am absolutely overwhelmed with your sorrow and hopelessness; and I am just as overwhelmed at the surge of immediate response to your post. I'm so sorry I wasn't home to see it sooner. I'd like to thank everyone from other forums and the helpers for being there for us; you've all said more than I ever could.

I'm thinking of the immediate hours. Abasaki, I too have no one special and no money at all. You have your parents; I won't suggest you talk to them, I sense you would have if you could have...and I know that without money your choices of who to turn to are very limited. I don't know the US system, so I can't really offer much practical advice.

But I know what I'd do if I were you right now. I'd go immediately to the ER and tell them what you've told us (specially the allergy problems!). I have no idea what they could do but I just feel they might do something. I have no idea what happens if you tell them you have no money. If they're likely to kick you out, can you get some attention first and worry about that later, I'm wondering.

But maybe even before you do that you should phone one of those numbers Jo posted (extremely good idea, Jo, for us all...). I was one of the people on the other end for a couple of years long ago - and you'd be shocked at the high percentage of callers who were not only severely depressed, but were severely lacking in funds too. They go hand in hand. We had lists of local assistance of all kinds, things you wouldn't guess at. Please give it a go, right now. Right now, please?

I'm sending this off the top of my head, I'll clean it up later.

You've been here in this forum since practically day one, Abasaki, you're part of our base core. You always come on to help others, please let us help you...
many hugs xx

just wanted to let everyone know i made it through the night... nothing's different or better but I'm still here.

(((((((((((hugs)))))))))

I just woke up, so my brain is still a bit foggy but I just wanted to give you a hug.

I'll be online for most of the day if you want to talk.

Take care of you,
Liz

Dear Abasaki

i am so glad to see your post and just hope and pray that the right treatment can be found to lessen your pain

many people care about you here.....even those of us who are just getting to know you

http://i21.photobucket.com/albums/b2...575-19-044.jpg

Attachment 543

shhh..now don't tell moose i snitched this hug from her to give to you. :p

on day at a time. keep reaching out. we are here for you.

It's good to see you back online and talking with us all.

I may have a power outage due to a big wind storm coming tonite-
it's gone out 2x already today - and no wind yet!:eek:

But I wanted to say that I'll be thinking and praying for you to find strength and help to get through this.
For the short term and the long term.

Woot!!
 

I am sooo relieved! ((((((((Abasaki))))))))

The things you say in your post are so amazingly like me that I could have wrote them. Ever since the doctor said "oops!" when he discovered he had blocked the bloodflow in my right leg my life has spiraled out of control. I lost my ranch, my cars, my great job, and there was nothing I could do about it.

When you talked about the vibrations, WOW! That is just like me! I even cry through mri's because the pain is so intense from all the vibrating, and forget about riding in vehicles for any length of time cause I will be down for a few days if I ride too long. The doctors tell me mri's dont hurt.... Hah! They are soooo wrong LOL.

Everything was replaced with PAIN that never quits. It is like the energizer bunny, it keeps going and going. On my last doctor visit a couple of weeks ago, this new doctor im seeing after my last doctor dropped me after 6 years, told me I must get out of my room to beat the deppression, and they are not going to give me the pain meds that have been working for me anymore. It has been hell so far, but im gonna look for a new doctor until I find one that will give me what I need to be more comfortable.

Now my body is having withdrawls :eek: on top of the usual pain.

I dont think they really understand how hard it is to act normal, or pretend to have fun, smile through the intense pain that never ever stops. :Sigh:

But you cant let it beat you, you must fight the rsd monster and know that the intense pain will give way to a lower pain sooner or later. Sure there are very rough days sprinkled through the just rough days, but just keep bugging the doc, and looking for a mixture of meds that will give you more easier days than the very rough ones. You will find something if you dont give up.

I know it wont cure this nightmare, but it will make it easier to fight. It took me almost 5 years before I found the mixture that keeps my pain mostly at 5 - 6 instead of 9 - 10. I still have flares, in fact this stuff has spread on me a few months ago and I have been in a flare ever since. But it just makes me that more angry at it, and I will push to get it under control. We cant let it beat us!

If you cant afford phone calls just send me a email or pm me, and we can at least instant message, or join the chat room. That way we can help each other through the rough spots.

I was wondering if you have tried amitriptlyne (sp?) it doesnt work for me, but my old and best doc told me that it works for nerve pain. It did help me sleep though, I just didnt like the drugged feeling it gave me.

Anyway im soooo glad you are still with us :)

I love ya much and am praying the pain lets off a bit so you can get some rest, and feel a little better.

Big hugs
Allen

Thank You!!!
 

Dear Abasaki,

Please check your private messages, something I constantly forget to look for.

Also, don't stop talking about this -- talk as much as you need. I have felt that I was hogging space and people's time, to the detriment of other members who might also need to talk about stuff in their lives, when I spent so much time writing about me over a ten day period, but it helped me through my crisis.

You are talking about the 2nd most important decision you can make in your life and you don't want to die but you don't want to live like this anymore. If someone here can help you defer your decision for a while, who knows(?), you might start having less pain (tolerable pain); some alternative may suddenly appear.

I won't talk about what suicide does to family and friends, I think most of us who have seriously considered suicide dealt with that in our own minds before reaching this point.

I will say that even though it may sound silly to repeat it, death is permanent. You know that, it is why you reached out to us, you need some kind of hope to help you keep going. Hang on as long as you can, clinging to the belief that the next post may provide that hope; but only if you haven't decided an hour or a day before you get the chance to see it...Vic

((((((Abasaki)))))),

That's a good FIRST STEP. Now, take a another one :icon_wink:

We're here to help you with all of the 'steps forward':


BIG HUGS.

Barb http://chocolate-moose.p5.org.uk/MIN...aresmilley.gif

Hello Abasaki

I just wanted to say Hello to you today and offer another gentle ((((((((((hug))))))))))

I'm here if you want or need to talk.

Take care of you,
Liz

I am a friend of Abbies...
I found this link on her computer...and just read her posts
I wanted to let you know that she's with us but isn't really talking.

I will let her know what you have all said in your posts.

Thank you,

thank you k. please let her know that she is in our thoughts and prayers.

Yes, many thanks k., please do that and give her a very big but very gentle hug,
all the best.

everyone,
this is abbie...
my friend has me reading the msgs on here...
i wanted to let you know... im still here... holding on...
nothing is different... but i am trying...
thank you...
hugs to all,
abbie

awww sweety...i am so glad you have k ther with you!!

one day at a time. hang in there.

(((((abbie & k)))))

Hi And Welcome...i Am In The Same Boat As You And It Sure Is Shaking So Much These Days That I Do Want It To Sink....but.. Everyone Here Is Right..hang In There....i Have Been There For 13 Yrs Now Anad Each Day Is A Struggle But...i Refuse To Leet This Disease Win..so I Vent Here, Cry Inside Alot And Try To Make It Thru Each Day.. Good Luck And Keep On Venting..it Does Help..you Are Not Alone..... Peaceful Hugs....moonstar (linda)

I'm losing my grip....
I don't know what to do...
Thoughts aren't good...
I know what I want to do....

I'm sorry....but I had to say these things...
thought maybe getting them out might help...

((((((Abbie)))))),

http://chocolate-moose.p5.org.uk/MIN...bears-mini.gif

'Thoughts' are just 'thoughts'. What's important is what we DO. If you're anything like me, you've got thoughts running around in your head like gerbils on an exercise wheel :p

Just let 'em run around as much as they want. Every once in awhile throw them down on a piece of paper or in a blank book.

And then DO what you NEED TO DO to get your balance back. To get your life back.

Most of have been affected by "gerbil-brain" at some time in our lives. We're all here to support you and listen to you as much as you want and as long as you want.

Hang on tight. And let people CARE FOR YOU. BIG HUGS.

Barb http://chocolate-moose.p5.org.uk/MIN...ding-hands.gif

You are still in our thoughts.

Have you made any calls to the hot lines { just to talk with them?}
or even to other doctors- to demand better pain control and help for depression?

are you eating OK ? and maybe taking some multi vitamins & B complex for stress?

Jo,
I spent most of the afternoon, eve, and night yesterday with my doctor... chiro/acupuncture to try to drop the pain levels... they came down and then went right back up...so he kept at it as much as he felt was safe.

we are still looking for a pain medicine that will work but won't cause an allergic reaction.... so far no luck.

antidepressants... still taking cymbalta but doc is looking for one we haven't tried yet... cymbalta is about the 5th one we've tried.

eating...not really...i force myself but get sick shortly after.

vitamins... i take 3000mg vitamin c, 200mg - B1, 200mg - B6, 1200mg - NAC.
can't take a multi -- sounds crazy but i get severe sore throat when i take one for more than a couple days.

as far as other docs... i've been to about 15-20 and they all send me back to the ones i am with...tell me the docs i have are the best for treating me.

I haven't made any calls... i don't have phone access.... and driving to one really isn't a good idea...

((((((Abbie)))))),

HMMM!!

I'm wondering if you're allergic to the fillers in the drugs. Might be a good idea for you to pop over to the Gluten Sensitivity / Celiac Disease forum and read a little bit.

I know pharmacists can compound things and leave out some of the junk that people are allergic to.

Allergies could be affecting your ability to eat too. HMMMM!!

Make a list of all the drugs that you've taken with the side effects and show it to your pharmacist. See if they have anything in common -- like ingredients, fillers. Make sure you let the pharmacist know everything that you're taking, including vitamins and minerals. There could be some kind of interaction going on there.

I know when I had my gall bladder out, they gave me oxycontin for a very short period of time. I was drinking one of those grapefruit flavored low-calorie drinks. For some reason I was THIRSTY and I was CRAVING grapefruit. The grapefruit extract in the drink apparently killed off the ability for the oxycontin to relieve pain. I've since found out that you shouldn't take grapefruit juice with a lot of different meds 'cause it negates the effect. Weird, huh.

I used to go to my EX-chiropracter -- he moved :girl(sad): -- I was his last appointment on Friday afternoons. He used to spend an hour and half with me. He even massaged my FEET. Man, I *LOVED* that guy. If I had found him before his girlfriend did -- HUGE SIGH :D I used to leave there so calm and relaxed and the pain was all gone --AAAHHHHH!!

I was just wondering if you could get the last appointment of the day if that would help :confused:

I *KNOW* you're gonna figure this out. You've just got to see the patterns and then find a solution. Easier said than done, right!!??

I hope you sleep well tonight. And I hope your pain levels are way down tomorrow. BIG HUGS.

Barb

Hi Abbie,

That's the way, little by little, day by day...well done; Moose's suggestion is *really* good - with a bit of luck it might start the process of determining what's causing the allergy, how clever. The quicker we can find a way for you to deal with the pain, the better. Thanks so much for keeping in touch...
xxx all the best :)

Thinking of ya
 

Hi Abbie!

I just wanted to let you know ive been thinking of ya :)

Hope things are easing up for ya, and know im keeping up the prayers.

Love ya sooooo much
Big hug
(((((((Abbie))))))))

Allen