screaming inside
 

Im not sure where to even begin..Im so frustrated abit depressed & just want to scream from the pain. I dont know how much more pain I can handle I really dont, most of my time is spent in bed unless Im up to walk my dogs use the bathroom or get food/drink. I did see my doc last week & told him it was time to change pain meds cuz the 5mg perks arent doin **** but being that I hav no insurance & hav already gotten my meds for the month we arent changing anything til end of month til then its a matter of making it thru each day without screaming just balling my eyes out. Guess after 9 1/2yrs its all getting to me, Ive tried to think positive but its so hard rite now. Im only 34 almost 35 & my entire body is just falling apart even my teeth areI decaying from the inside out its sooo embarassing when I was in the dental feild for so long I feel so alone all I can do is cry cuz I dont need my neighbors callin cops if I scream cuz of pain that would be fun tryin to explain to cops lol. I guess Thats all for now gonna go back 2 watchin tv any advice welcomed to help with this pain thx all & hope u all are havin much better days than me air hugs
~Heidi~

Heidi, I am new to this disease and have gone from 300mg -900-1800 of neurontin in 2 months so I am afraid I will be in yours shoes in the near future. I am so sorry you are in so much pain. Doctors are so afraid of getting in trouble giving too many pain meds. Have you seen a pain management doctor. They usually do more for helping chronic pain

Hi Heidi :) I'm so sorry you're struggling to cope right now, after nearly a decade of dealing with pain daily, it's not surprising you have just had enough of it...

There is hope and there are things that can be done. Unfortunately finding the right combination of drugs and treatments for you can take too long, and of course there never seems to be a combination that takes away all of the pain...but you should be able to get through a day without crying from the pain, and that's what your doc needs to deal with quickly.

The insurance question and the problems long-term patients have dealing with the system in the US just makes me want to punch whoever thought of it :mad: because ultimately if you don't have money, you suffer. Madness. There isn't an easy answer, obviously :rolleyes:, and I can't think of anything that will stop the pain for you. I wish I could.

All I can suggest are some deep breathing exercises. I know it sounds ridiculous when you're crying with pain, and can hardly breathe...but it does help. With the terrible pain comes fear, and then panic when it won't stop. You need to get back some kind of control, even if it's just over one thing. It does help, just a little. You are under enormous stress because your whole body is tensed against the relentless pain, and stress fires all sorts of hormones and things into your system and makes everything worse. Give them a try if you can manage to - a long deep breath through your nose, hold for a moment, then breathe out slowly while you count (under your breath) to 5.

Sorry I can't suggest anything more useful. Take care of yourself and hang on in there...

Bram :hug:

Wow Heidi I really wish you some relief.
I remember when this all started for me (before diagnosis) I called ortho. surgeon's office in excruciating pain and they said, "well, just go to the E.R."
I wanted to throw the phone at them!

But, really could that be an idea? Don't they HAVE to treat you in E.R.
insurance or not? And isn't it in the patient bill of rights to have some level of
pain relief?

Magnesium citrate is OTC & does help calm nerves.

Bram has good advice, it IS hard at first to make yourself try deep
breathing excercises but it does help slow the combination of pain, stress and emotions from spiraling down.
Wish I had something better to say. Please hang in there.

Hi Heidi, so sorry you are suffering. I do understand, been there. Bram is right, deep breathing exercises are easy to do and very useful. Getting your emotions in a better state will help you cope with the pain. Bram has also shared with us using meditation that you can find FREE on the internet. I use Pandora to listen free on the internet to new age music/spa music that I find very relaxing. Epsom salt (magnesium) can be bought at any drug store or ordered online http://www.sfbsc.com/epsom-salt?b=1 which is cheaper. Dissolve 2 cups in a warm water bath and soak for at least 15mins. I am also a big fan of aromatherapy using lavendar oil. Let us know how you are doing. ~Lottie

I am so sorry and I can relate. I don't take meds anymore though I am seeing a new specialist but when in a flare getting through the day is so hard. Sometimes I feel like I will lose my mind or not make it from the pain. This may sound odd but I try to self talk in a calm way that I have made it through bad times and I will again. Also do what I can to comfort myself which can be hard. I usually call my mom and talk, cry, vent. Sometimes my mom says you just need a good cry to help you feel better.
Question for you, you stated you have no insurance and so have to wait to change meds. Have you talked to your doctor about could he start it now if he has sample of the meds? Also you know if you don't have insurance some med companies if your doctor writes an rx will give you the med for free.
I hope you feel better.

To all of u who posted comment, suggestions etc THANK YOU means alot & it helps to vent. I am still in the same spot just tryin to make it thru eachday last nite was hell cuz I was fighting off seizures on top of it love those nights lol. I hav been doing the deepp breathing for some time it does help to a point. I hav thought bought havin someone drop me off @a hospitl but I dont need them thinkin Im just some drug additic eeither cuz of where I live so thats what stops me from doin that anyway for now thats whete Im @ just waitin til I can change meds & hope it works..sorry if I didnt answer all ?s not easy from a phone..hope u all are havin great pain freee days..til next time
~Heidi

Heidi, when you're in that much pain, who gives a cr@p what peope think? Most folk don't/can't/won't understand what it is we're dealing with on a daily basis :rolleyes:

If you need to go to the hospital because you're just in too much pain to function without help, then go. ER might not be the ideal place for a CRPSer, as I think a few have attested when they have tried it, but if you are out of options then go for it - there are some good doctors out there. Maybe take a print off of some basic CRPS information for them, and remember not to let them use a BP cuff on your affected limb, or take blood from it etc. Whoever takes you there just might even realise how bad this beast can be...

Remember, even if no one else 'gets' you and your pain, we do :) For good or bad, we do understand, and we're behind you all the way. Hang in there. Hope you get some sleep tonight. I'm off to change into my lightweight but warm PJ bottoms, because my trousers have fired my leg up into all sorts of red/hot/stabby/burning horribleness. Some days I really really hate this :p

Bram.

Hi Heidi, I'm sorry you're in so much pain. I know rsd hurts and I wish I could take the pain away, but all I can do is let you know that I'm here if you need a friend. I try to remember that the bad pain flares will eventually pass and I take my meds and use my emergency rsd flare list to help me through the really bad pain days. The flare list was an idea that I got from Brambledog. Some others on this message board have also reminded me that the bad pain flares would eventually pass. They always have so far, and I hope they always will. All we can do is take it a day at a time. Sounds cliche, but it works for me. I hope it helps you too. Take Care.

I'm so glad the emergency flare kit helps you Renee! :) Small things can sometimes help where the bigger things just don't do what we hoped...:rolleyes:

Heidi, hope you managed some sleep and hope today goes better for you. Take good care of yourself while things are so bad, and as Renee said, it will ease off eventually. Hang tight.

Bram.

Hi HeidiB
 

Hello Heidi,
I am sorry you are dealing with such awful pain. Have you asked for an increase in medication?
I live near you, and I do have the name of several Pain specialists in my area. One of which does Ketamine infusions. (He did for spinal trouble) I don't know however if he treats with that for CRPS. It may be worth it to call and find out how experienced either of these doctors are with this condition. PM me and I will give the name and numbers of these physicians. I really hope you can find some relief, so you can again enjoy some of life. Don't give up hope. I know for sure Tampa Bay Hospital works with Ketamine. ginnie:grouphug:

I hope you get relief soon!
 

Hi Heidi,

Boy do I get the situation you’re in. I too have had CRPS/RSD for a long time now and up until recently did not have insurance for several years and was dependent on whatever care I could get. Often and sometimes still, I have to go to the hospital ER to handle acute pain, to help me “get ahead of the pain”. I war with myself as to if I go or not. If the pain gets ahead of you, you can play hell trying to turn it around, and may never without the help of the big guns the hospital can offer. Maybe they can give you something (Rx) that will help until you see your doc. Are you on anything for the seizure that perhaps will also help with the pain?

The ER is such a crap shoot as to how they will treat you, in every way. I can’t tell you how many times I could tell they were questioning if I was drug seeking. That is so frustrating, but it happens a lot. That’s they’re issue, yours is getting your pain under control. Go to the ER hon, don’t suffer. I know, God do I know, how I fight to avoid the place at all costs. BUT they have an obligation to treat you.

As I’m sure you know, Chronic pain is now understood to be a disease, even if they don’t understand what CRPS is, surely the “professionals” at the hospital know this. I’m sure you’ve done this before, but explain that you’re having breakthrough pain (acute pain).

Gosh I hope you get some help soon. Please, if you can, go to the ER if that is the only option and plead your case. I hope you get relief soon! :hug:

Have you tried ibuprofen not sure if you can mix with what you are taking but any pharmacist could tell you. That is the only thing my doctor gave me for pain.