CRPS or RSD

Ooooooh honey, you poor thing. I have no idea what to say, I'm so sorry to hear that your condition has deteriorated. Thinking of you always and if you ever need to chat or vent when you are up to it you have my e-mail address. Honey keep strong... I know you are now and I really wish to say something supportive!! Sorry I'm not being much help.

Hi Lolly. Sometimes there are no words. Just knowing I've got friends helps sweetie

So much has happened in a month. Well morphine patches don't work and I cannot have acupunture because my condition is chronic it wouldn't help much now, so next it's sympathetic nerve blocks into my neck. It means I will have no feeling at all. I won't know what's hot/cold or if I get a cut or a more serious injury. I'm thinking it will give me a rest from meds for a few months....the pain is that bad and I've had it 24/7 for 10 months now.
I've had tearful days and days stuck in bed not being able to move because of pain but I still laugh at things. At the moment it's usually myself when I'm trying to wash myself or saying something stupid through a medicated haze. I'm leaving the luxury of getting dressed for hospital and doctor appointments. I invested in an extendable grabber so I can get things without stretching up too far. I still have to ask for help at super markets though ;D

@ Erica....here's a really good link for the condition. I hope it can help your mum and grandma. The report is one of the most concise and easiest to read that I have seen. CRPS/RSD such a debilitating condition that takes over so many ordinary things in life. Many blessings x


http://www.forgrace.org/documents/carden-nonphysician.pdf

oh hon, big hug. My mom has lupis and has lost the feeling in her feet and fingers. She cuts herself often because of it.

Today I have a high fever, really want to be in bed, but am at work. I have tomorrow off, but its my job interview. so I cant rest tomorrow. I will rest when I come back from it.

I am glad you are not getting too depressed about this, I am also trying to keep a positive outlook. love you lotts

Hi Michelle. Try plenty of clear fluids and paracetamol. It will bring your temperature down. Don't take any strong flu type drugs tomorrow though as it could make you sleepy for your interview. Hope it goes well for you, I know you have been having work problems.

That's the only thing that really worries me about my condition. I will be on half pay in April and don't know how much I will be able to do. I'm trying to stay positive. I just keep being told from different professionals that there is nothing more they can do.

its horrid when they say that. be positive. hugs

ps I feel much better

Well I've seen my GP again. He is contacting my pain management specialist for an earlier appointment. He's also refered me to an occupational nurse to see what aids I need at home and he's made an appointment for me to see a finacial advisor to help keep a roof over our head. That word 'disabled' came up. It doesn't sit well with me because I've looked after everyone else all my life. I'm in a mental transitional place and it scares me

@Michelle, I'm glad to hear you are feeling better. How did your interview go? x

OOOOOOOH Sheila it's very lovely to hear from you, such a shame to hear that things are getting worse *big hugs* xxxxxxx

Sheila I'm so sorry things have deteriorated Have the doctors offered you any counselling or psychology type input? Its an enormous change you're going through and a lot of loss involved when you can't work. I run a pain support group at work and although the group can't fix the problems that the group is going though one of our long term members said its a lifeline for him as it remind him that he's not alone. His exact words were that it helps him to feel like a piece of the puzzle not out there on his own. Big cyber hugs xxx

Hi Kat, thanks for the hugs, my GP got so much ear bending from me last time I saw him. I wrote everything down in case I forgot. The occupational nurse will discuss therapy groups with me. It's a bit like if I accept that I need to go to a group then I have to accept all the things it really means. I know the reality of my situation but it gets so tiring every time I can't do something and have to ask for help. Most people look at me like 'you're a young person, why can't you do it'. My condition is only really visible on a physical side in my slow walking, inability to open doors and problems with stairs. Mentally the meds make me forgetful and my speech has been affected because of the spread up the side of my face. People who don't know how I used to be probably would just think I was a bit slow.

Things are tough still
I too hate the phase "disabled". I once has a huge dyslexic teen explain to me he was not disabled as "dis" means "not" able.He's differently enabled.
Speak to occupational health at work and see if they can make a future plan.Your consultant may be able to get involved to make a sensible plan.
I still miss my support group-adjusting to change is such a challenge I hope you do find a group that can share these challenging times.
Above all be kind to yourself.Hugs

Hi Debs...I like to think about what I can do. The consultant only diagnosed the condition and refered me back to my GP because he is a sports injury surgeon. There is no surgery available so he discharged me. He was really good and told my GP what treatment I needed so it was worth seeing him. He also explained how a lot of the medical professionals know very little about the condition. I've become my own expert and carry information with me about CRPS.
I've seen my work occupational nurse and she was really concerned about my condition. She fully understood that I cannot work at the moment with my condition being so bad . I'm going to see a works doctor too.
It's hard to plan for the future because each day is different and there has been significant spread to other limbs. The deterioration hasn't levelled off. I'm sort of planning no more than 1 or 2 months ahead. I think pschologically if I tried to plan for much more than that I would crack. The motor part of the brain is close by the emotional bit so I do get very tearful and tired emotionally.
I have join a group of FB so we all have a moan and groan about CRPS and we have a laugh too about funny situations we get into. It gives me hope to be able to live with it x

Ps...My physio used a modified Bowens technique to release my frozen shoulder. I had suggested she look at it after you mentioned it. Thank you sweetie x

Oh my, I'm sorry to hear this. Have you tried Reiki or other energy healing systems? Only thing I can think might help really (and being a bloke we have to try don't we? )

May the Gods hold you and bring you ease.

Hi Raven. My friend has done some Reiki but his hands got so hot he had to stop. He nearly jumped when he went near my shoulders. We have done some healing circle work that helps to calm the pain. Normal everyday life tends to pull my mood down again so I think I would like to live in the woods far away from so called civilisation.

My pain management specialist wants to take me off all my medication apart from the amitryptiline! He has refused to do the sympathetic nerve blocks and seems to think that it is all in my head and I need the anti-depressants only. They are being used to relax my muscles not because I've lost my marbles. Any depression is a symptom of the condition and not the cause.

I was sent by my GP to see him at a private hospital. He treated me like a second class citizen and walked to the door, while I was explaining something to him, and opened it to tell the next person he would see them now. My fella nearly introduced him to real pain and responded by saying if we chucked money on the table we would have been treated like human beings. I'm seeing my GP again and asking for a second opinion and to see the consultant who diagnosed me. He was a private one as well, but such a caring and knowledgeable man and I trust him.

It shouldn't be a fight to just live an ordinary life without pain. I'm truely exhausted from it all, physically and mentally.

Shelia,
When you get back to that GP.Print your thread.Don't bother to explain you done it all here.
Just take it one day at a time.You have every right to be exhausted.Keep documenting.
Your correct it shouldn't be a fight.Ask to see the consultant that you respect.
Give your fella a gentle hug when you can.