ERYTHROMELALGIA in BOTH FEET and Back PAIN ...

  • illeatyu
  • illeatyu's Avatar Topic Author
  • Offline
  • Platinum Boarder
  • Platinum Boarder
More
5 years 1 month ago #23757 by illeatyu
Frostbite,

First and foremost yes we care that your in pain and we want to help, what meds are you on, have you been to any pain management specialist, are you seeing someone for the depression, I tried suicide a few years ago and it's taken a long time too get back out the hole but it is possible.

I have mainly nerve pain and found that Lyrica and Gabapentin help.

Anyway every one on here has chronic pain and so some days are slow,some,are fast, but the others will jump on eventually and maybe they will have some more suggestions for you.

Illeatyu

“All the elements in your body were forged many, many millions of years ago, in the heart of a far away star that exploded and died. That explosion scattered those elements across the desolations of deep space. And came together to form you, you are unique in the universe.

Please Log in or Create an account to join the conversation.

More
5 years 1 month ago #23764 by jo.m
HI Frostbite,
Welcome to the forum and I can definitely confirm that we all CARE for you on here. I will also say that we all suffer and many of us have hit rock bottom at some point and felt like there was no way forward with the endless pain we have to endure and the consequences of the pain :(
I know you feel there is no way forward however you really have to muster all the strength you have (I know there's not much left) and you need to ask for professional help.
You made a great start coming to our forum and you will find support and friendship from like minded people but we can't give you medical advice only share our own experiences.
Please consider contacting any of the following SOON as I really think you need more help than we can give you. However, we will support you all the way and hope you will stick around and know that even in your darkest days you have friends here who care and fully understand your struggle.

www.beyondblue.org.au

www.lifeline.org.au

www.blackdoginstitute.org.au

Good luck and keep in touch

Jo :)

"Just thinkin' about tomorrow
Clears away the cobwebs and the sorrow 'til there's none

When I'm stuck with a day that's grey and lonely
I just stick out my chin and grin and say, oh

The sun will come out tomorrow
So you gotta hang on
'til tomorrow, come what may!"

Annie - The Movie

Please Log in or Create an account to join the conversation.

More
5 years 1 month ago #23768 by grappers
Replied by grappers on topic ERYTHROMELALGIA in BOTH FEET and Back PAIN ...
Hi Frostbite,
You will not be the first or last who comes to this stage in their pain journey, it seems we all hit rock bottom before we get the help we need, I was in the same boat before finding this forum, with the support from fellow pain sufferers, finding the right and pushing professionals by myself to get the care I needed, unless you take charge nothing changes, finding a good pain clinic and a GP who listens is a must, and don't be afraid to open up to C and psychiatrist, especially if they are attached to pain clinics, they can push care and treatments, but they have to have a good understanding about chronic pain, a lot don't, so ask the questions first or you will be let down.
On this forum we all care, we are all in the same boat, there is always someone who will chat with you when the chips are down, having people who understand makes a big difference in the way you feel, we all have problems in being believed, not here, there is even a vent thread if you want to let your frustrations out.
If you can't afford a private psychiatrist, get your GP to set a GP management plan, you can get seven visits straight up and up to ten a year if you are not coping, covered by Medibank.

Don

Please Log in or Create an account to join the conversation.

  • illeatyu
  • illeatyu's Avatar Topic Author
  • Offline
  • Platinum Boarder
  • Platinum Boarder
More
5 years 1 month ago #23782 by illeatyu
Replied by illeatyu on topic ERYTHROMELALGIA in BOTH FEET and Back PAIN ...
Frostbite,

Buddy your doctor is full of crap, mine prescribed over the course of two years before I ever saw a pain specialist while we found out what worked, OxyContin, tramadol sd,,fentanyl, MS Contin, Targin, nor span, diazepam, Valium, endone, panadeine forte, and a few others, we played with doses and combinations and now I can work mostly, and I can walk and do other things I couldn't.

The endep helps with the whole wanting to die bit and also helps with the nerve pain, and I was on 300mg pregalbin 2x day, so maybe start with upping that talk to the doc of course but if that doesn't work go for Gabapentin cause it's a different drugs you might get better results.

All I can say about the whole suicide thing is it's a permanent fix to something that may get better, and I know I've been at the bottom of that hole and fu&@ me its deep, I also had a mate jump off a bridge I still blame myself for that for not knowing he needed help.

At the end of the day buddy it's your call and we can't stop you, but we would rather you didn't at least until you've tried the other options.

Illeatyu

“All the elements in your body were forged many, many millions of years ago, in the heart of a far away star that exploded and died. That explosion scattered those elements across the desolations of deep space. And came together to form you, you are unique in the universe.

Please Log in or Create an account to join the conversation.

More
5 years 1 month ago - 5 years 1 month ago #23786 by arjay
Bloody amazing lost my post two time Arggh
Hi
fellow traveler.

Pain is pain is pain and you sure have it in spades.

I have never heard of this condition and looking it up on wikipedia
sounds dreadful.

I assume you have joined the TEA association and done much research into
your condition as we all have in our own way.. Also look at "in the news" section of TEA ..looks promising

At the bottom of the their page is a button for links.

Clicking on that takes you to a list of further sites.

One of which is erythromelalgia support groups.

Both look helpful especially the Yahoo one as they indicate that they
have contact information for 440 doctors in 23 countries.

You may have already gone down this path already and I apologize if this
is so but if not then it may be worth exploring.these specific routes.

I have found rather than waiting for the """ medical profession to get
around help us sometime the best thing to do is find out which hospital
may help and just turn up at the Emergency entrance and refuse to go
away until they admit you. By the look of your feet if they refuse
go to the media. Nothing galvanizes results like bad publicity.
Desperate attention sometimes needs desperate actions.

If you go to jail Ill come and visit you or maybe theyle shove me in
too

Take care friend

Arjay
Last edit: 5 years 1 month ago by arjay. Reason: additional text

Please Log in or Create an account to join the conversation.

  • illeatyu
  • illeatyu's Avatar Topic Author
  • Offline
  • Platinum Boarder
  • Platinum Boarder
More
5 years 1 month ago #23793 by illeatyu
Replied by illeatyu on topic ERYTHROMELALGIA in BOTH FEET and Back PAIN ...
Frostbite,

Mate no offense was meant I nearly suggested some things to try, as I have no new information to offer and you obsiously don't want my opinion on other items I will refrain from further comments.

Illeatyu

“All the elements in your body were forged many, many millions of years ago, in the heart of a far away star that exploded and died. That explosion scattered those elements across the desolations of deep space. And came together to form you, you are unique in the universe.

Please Log in or Create an account to join the conversation.

Moderators: Johnnojo.m
Time to create page: 0.107 seconds

About

All demo content is for sample purposes only, to represent a live site.

Note: Galatea is built on the latest version of the Gantry 5 Framework.