At wits end!
 

Hi my fellow RSDers, I hope you all are having a good night.
I myself am having a really hard time & have been for awhile just some days worse than others such as the past week so instead of continuing to hold it in I thought I'd vent on here cuz I'm @ my wits end :( My doc changed my pain meds to 2mg dilaudid trying to help with my pain but it's not worked Ive been on it since the 21st of last month & I was really praying that the change would help but it really hasn't done much more than the perk's I was on & Im to the point beyond tears I just don't know what to do I'm not sure how much more I can take of this it feels like my entire body is on fire in a vice grip & being ripped off all at the same time is the only way I can think to describe it. Im not sleeping sometimes for a couple days at a time because of the pain & I'm starting to feel like I'm gonna just lose my mind, & getting more depressed. I just don't know anymore. thank you all for being here to listen & vent to I'd feel even more alone than I already do w/out all of you & of course my mom & gma.. I hope you all are having better time than me til next time take care
ps on a side note has anyone else had problems changing their mood cuz I haven't been able to change mine for a little while

Go take an epsom salt soak. Relax as much as you can. I'm sorry you're hurting so much. Sounds like you're in a really bad flare. Dulaudid is a pretty strong pain med. It sucks it's not working for you. :hug: I have been on and off Lortabs for 10 yrs. A dr put me on percocet once and I had a bad hallucination. I told my husband he looked like the devil then past out. I didn't take another one. I wish I could take everyones pain away or take it on myself. I hate hearing about people hurting. I will pray you feel better soon and this horrible beast lets up its hold a bit.

Wow, I think you need to call the doctor and try something new. Trying to find pain meds that help can be hard. I know how unfair it is. I have to take muscle relaxers to sleep. It's ridiculous. I just thought...I use aspercreme for pain I can't tolerate. It helps to put the fire out for a bit.

I hope that you can find help and relief soon!
good luck to you!!
Heather

Hi Heidi,

I'm sorry that you are having a really tough time right now.

There are soooo many frustrations dealing with chronic pain. Despite my experiences, I still get zinged with getting my hopes up with any new med or treatment, when I SHOULD know that 9 times out of 10, it won't help. :rolleyes:

Do you mind me asking what you were taking before for pain ? Did you switch because it wasn't strong enough, didn't last long enough, or because of side effects ?

Heidi - no one should have to suffer like this. I am so sorry. And I have been there more than a few times. Call the prescriber first thing in the morning to get a new plan. In the meantime, try comfort measures: warm epsom salt bath, peaceful music (i like pandora's "Spa radio" the best), call a friend., do some gentle stretching to help relax you Feel better soon ~Lottie

I'm gonna call doc first thing & see what he has to say, because this is too much pain to deal with I feel like I'm gonna just go nuts & I've just sat in my room in tears for days just cant keep feeling this way. I really had hope the new pain med (doladid 2mg) would help, but it hasn't. I got to thinking too that maybe something else is wrong so I went on WebMD today put a lot of my symptoms in & it just kept saying seek medical attrition & the things it said could be wrong made sense so gonna talk to doc about that too & see what he says to do..THANK YOU ALL for the moral support it really helps to know I have all of you from the bottom of my heart thank you :hug:

PS>:Off-Topic: on a side note I haven't been able to change "my mood" in awhile now was wondering if I'm the only one who's having the problem or anyone else having same issue & how do I fix it? I've logged out done a refresh of the page everything I can think of but noting so thought Id ask you all, thank you all again & I hope you all are having an easier time than me your all in my thoughts & my prayers :circlelove:

Can you tell me what else you are taking? I had to end up on a combo of medications. Dialudid though is very short acting. You get the high then it drops you. And most of the time doesn't touch the pain unless you take it continuously.

I ended up on a antidepressant (which helps for pain and sleep). A pain patch. Break through pain med. neurontin. And clonidine.

Like I said usually it takes a combo of meds.

So sorry Heidi, I hope you start to feel a little better very soon. It is an exhausting disease to have when the pain is high and relentless...:(

I'm feeling crappy myself with a pain spike with these darned weather changes here in the UK, didn't sleep well, pain all over the place today, tears and frustrations ongoing. Just had a go at my poor husband about his lack of gardening interest because the sun is out for a few hours before the next storm comes in, and I'd like to sit outside for ten minutes and get some sunshine, but the garden is a neglected muddy deathtrap for me since I haven't been able to garden myself. It gets me down. Usually I'd just complain a bit, but today I'm a donkey on the edge...:rolleyes:

Know that you're not alone, and hang in there. I hope someone can help you out with some better med options quickly. Keep fighting to get what you need.

BTW, haven't changed my 'mood' icon for months, I'm on the iPad, and if I try it bombs out!

Thinking of you.

Bram :hug:

I spent most of my adult life in an alternative medicine practice (primarily massage). One night during my worst episode of flames roaring off my arm with a burning cold inside, so bad I could barely breath much less sleep and I grabbed a tube of an extremely pure, high grade, essential oil cream that I used on injured patients at the clinic where I worked. I had no expectations having always used it myself and others for sports injuries and muscle strain etc. But I applied it and the next thing I knew I was waking up in the morning and my intense pain was gone. I'm not going to insist it was the cream because I don't know for sure but I think it was at least a factor. It is quite different than other creams and was also very popular with my patients on their varied injuries.

I haven't yet had a new episode of that magnitude to see if I can duplicate that result.

Anyway, I have a bunch of sample packets that I still have since I had to stop seeing patients when the CRPS hit me. If you want I can send you a couple to see if it helps you. If you're interested let me know where to send them. It wouldn't cost you or me anything since I have them and I have a stamp. ;)

I can't figure out how to make a mood for myself. I click on the field that says Change Mood and my only selection is No Mood. I guess I'm a real flat-liner. :Sigh:

I love essential oils and have a couple of different natural creams that I use too, but they don't really help the pain, but they don't anger my skin and ease the dry soreness a bit. I'd be really interested to know what oils are in the cream, and exactly what the cream is. I'm in the UK, so I might not be able to get it here anyway. I like to give new things a go, after all, you never know...;)

Bram.

Hi Ladies

I found that if I am using Chrome, I can't change the mood but I can do it if I use Internet Explorer. I hope this helps.

Kim

If you're using a tablet like me it won't let you. Silly I know .:Doh:

Andrea -what essential oil is in the cream? ~Lottie

I'd be interested to know as well. Usually it takes a combination to get things managed. Dilaudid is a pretty heavy pain med, but is short acting. I know my doc is trying to slowly change pain meds and go up in strength, because going to strongest early on leaves no room to increase over the years. That is where other medications come in.

^ What she said... pretty annoying.

I will pray for you..
 

My heart aches for you.I will pray for ...Its hard changing meds.they act different for each person.I think the meds.are causing a reaction of depression by the sounds of things..Please keep intouch.I have had the last couple of weeks from you know where my -self.different meds. and they are not working..Not sure what to do either.I have to call Monday PM..so I hope you feel better soon..Sending prayers and hugs..

P.s..I am going to try something new..Bought a dollhouse online,because I cannot walk enough to find one in the store,,thought since I have twin grandbabies coming I could build it,and relax me...Maybe you could find something to relax you...Good luck

What a great idea moosey :) something absorbing like that makes an excellent painkiller.....better than most meds I've tried anyway! Good luck with it - I mad a dollshouse for my mum a few years backhand thoroughly enjoyed it...

Bram.

sorry to hear about your suffering, I have gone thru hell with my meds before because my body rejects most of them. I recently tried something new for me called CBD oil. The one I use is made from hemp and has no THC, it has given me relief beyond my wildest dreams and has even allowed me to drop 2 other meds. please talk to your doc first, mine wanted me to try a new pill that has CBD and THC for pain relief which I refused, I can't take THC. I ordered my oil from CIBDEX, if that helps. No matter what you try I hope you get the relief you need.

When sorry isn't enough..
 

I'm sorry, just doesn't seem to cut it when you know someone is going thru their own personal hell. It seems like pain meds do nothing. I finally found some relief with stellate ganglion blocks. I was referred to a doc outside of Tampa, FL. Let me know if you want the info.
But I am sorry and I wish you relief
Beth

I actually love when people vent on here because it helps me feel better cuz I know I am not alone! :) Lately my pain has been increasing and my symptoms have been getting worse. The burning is horrible. Plus my life is a mess right now! I could vent forever I think..lol I am trying to move out of the place that I am in because I don't think it is a safe environment for my daughter anymore in regards to her emotional and mental safety. I also have a hard time sometimes changing my mood. It is hard to always stay positive when you are going through hard times and are always in pain. The thing you have to remember is that you are strong! You have to believe in yourself! I would just keep focusing on the positive, remembering good times, look for the silver lining, write down all the blessings in your life and reread them, and remind yourself that this moment will soon be a memory. Those are some of the things that have helped me get through the hard times. I hope they help you. I also wish that you are doing well now. :)

update
 

Cant get online with my laptop so I hav to use my phone which a pain in the butt! So gonna make a short post went to doc today thankfully they fit me in but he thinks I may hav an infection in my spine so now gonna hav to get a double shaded mri which of course dont hav money for or insurance my poor mom is tryin to get $ together dont know what Id do without her..so may end up in hospital for few days time will tell. Hope u all are well & thanks for all ur posts means the world

efforts
 

Hi Heidi,

You have a lot to deal with, so hope you give yourself credit for what you are doing! Exhausting! I hope your doc tries a new regimen of medication and is more understanding too. I developed sensitivities to many narcotics and other meds and had/have to change every so often... it is a process of trial and error for sure until you really find relief..

Praying for you!! :hug:

Very brave
 

Hey Heidi
You really are going through so much and dealing with constant pain is wearying, it's little wonder you are feeling so sad. You have people from around the world in this site who all totally understand how you feel and like me will all wishing you find some relief soon.

If money is an issue, can you ask the doctor if he can test your bloods first to rule out infection? I'm asking because I had a round of scans in 2010 when they thought I had osteomyelitis and the scans then cost in excess of $1000. I was working then and not so concerned about the money, and, I didn't have osteomyelitis. Fast forward to 2014 and this week my PM is wondering if I have an infection in my back and has ordered blood tests which I had yesterday. The blood tests were bulk billed so cost me nothing, which is a relief now I can no longer work and money is extraordinarily tight.

I take an anti depressant, it's called Pristiq. I've tried others over the years and this one has been the best for me, no nausea and no weight gain. I've been on up to 200mg and now back down to 50mg, I credit it with saving my sanity.

Be kind to yourself, find what you can to relax you and indulge yourself in it. Hoping you get your results quickly so they can take steps to provide you with much needed pain coverage.:hug:

Hi Heidi! thinking of you, hoping you are better very soon. I pray you do not have an infection, that sounds scary. Wishing you wellness ~Lottie

can you get medicade?or disability? I work still and have insurance,but it will not cover meds.I need...so LOL