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11/28/2011 04:17 PM

I need to talk

LEFTWRIST
 
Posts: 69
Member

I feel so alone with my CRPS. I wake up some mornings just too sore and tired to go to work. My family say they understand my pain but they haven't got to put up with it 24/7 like me. My assigned health provider seems to be more worried that sometimes I don't go to work rather than that I am in pain.I have had this for 6 months and I am so fed up with it. I worry that I wont get rid of it and be able to work. I would love to be able to talk to another sufferer
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11/28/2011 05:08 PM
revvanbus
revvanbus  
Posts: 2032
VIP Member

Leftwrist, I and most of us here understand what you are feeling. We feel it every day.

I am so sorry you have been added to the list of RSD/CRPS sufferers. You should be pushing now for referal to a pain specialist, neurologist, pysio or whoever in your community specializes in pain management. In the first 8 months of this disease,what is normally given if the disease is diagnosed in time are nerve block injections a week to 10 days apart in a series specific to the location of your pain (I am assuming that is your left wrist from your chosen name so Stellate Nerve Blocks are what I had), and extensive physical therapy. Remission is a possibility in that period. After the first 8 months, the chances of remission drop way down. Sometimes it is up to us to get the ball rolling for our own health. RSD/CRPS often means we have to do that.

Welcome to our group.

Sending hugs and prayers that tomorrow your pain will be less and your rest better.

Rev.


11/28/2011 05:39 PM
maddiesgram
maddiesgram  
Posts: 2330
Senior Member

Oh, leftwrist, I know how you feel and feel so bad for you. There have been many nights over the past 5 years where I've felt so alone with my pain. There are a few things that have helped me besides finding a doctor and treating the pain as best as we can.

I've tried to really focus on that one day at a time. Sometimes things seem like too much and at times I forget to do this, but often if I don't let myself think beyond today the pain and other stresses I can handle just hour by hour or ten minutes at a time. If things are too much for that, it might be time to see a counselor or to get with your doctor more quickly than is scheduled and tell him/her that your pain is just too much. Don't get too emotional with your doctor, though, as they prefer if you can state facts as calmly as possible. Anyway, that's what I've found.

Also, several years ago I made a list of friends and family that I could call and talk to about this or other things. The list has and will change over time, but at that time, I tried to be honest about those people and how busy they were and how able they seemed to try to understand and help me. Then, I always had that list in my hand and when things were too much or I was too alone, I called someone. If they were not there or not able to talk, I tried the next person. It helped me to have the names and numbers right in my hand so that I could SEE that I wasn't really all alone. Others will not be able to really understand, but we have to be patient that they can't and know that we wouldn't be able to, either. So, get them to google it with you and read about it together or something like that if you want them to understand more.

Also, that's what this group is for and I'm so glad you posted. The people here do understand and we want to support you. We know what it's like. Find people you feel like you relate to even more than others and maybe send them a private message... you might start up a friendship like that. Also, do this. Go to the website of the RSDSA and they have a place where you can look to see if there is a supprt group for RSD people in your area. That might be helpful if there is one. Also, google all support groups in your area if there isn't one for RSD that works. There might be a pain group or other group that sounds good to you and the support can be very helpful.

As I have told a few others, I wish we lived nearby and I could take you out for coffee or something. Since that isn't possible, just keep coming here. We care.

Hugs,

gail


11/30/2011 04:44 AM
Jen28
Jen28  
Posts: 108
Member

You are not alone! I and another person I've met on here have had it for six months, too. I'm still trying to get up every day and go teach high school English, and I'm turning into the worst teacher ever because the pain just drains every bit of mental and physical energy right out of me. I just want to quit. It is so time consuming researching treatment options, contacting doctors, going to appointments. I had surgery - which was a scam and total failure. The surgeon did not actually remove the painful nerve mass in the ball of my foot, and I can't walk right, can't get any treatment for the lump because of the RSD. Trying to find a lawyer is time consuming - they're all turning me down because of 'conflict of interest.' The main goal, though, is to try to get into remission ASAP through a series of nerve blocks 7-10 days apart. My pain doc will only schedule one at a time... WEEKS apart. Yesterday I had to send him an email begging him to please follow the protocol, PLEASE don't deny me the opportunity to go into remission. My RSD is starting to spread, the lump is killing me, and my incision from the surgery 6 months ago is splitting open. Headaches all the time, no pain meds... and now I have to go spend my day with a bunch of rude, loud, disrespectful teens who don't want to be there. That is the worst. I need to take care of me - not them - but I, too, have to go to work. I'm not ready to give up the fight and accept disability. I'm going to keep trying to fight this. I'm trying to get in w/two other pain specialists who might see me. You need a pain specialist and nerve blocks. At 6 months, you still have a chance for remission, like me, but we MUST be persistent and aggressive and get the treatment we deserve. Get whatever doc you're seeing to get you an URGENT referral to a pain specialist. We both need those blocks NOW! Stay in touch on here, okay? Let us know how you're doing. This group has been the best thing for me since I've gotten this disease. Everyone here DOES understand; we are all going through this together. Smile Take care, and I hope today is better than yesterday, and that you make some progress in the right direction.

11/30/2011 11:50 PM
LEFTWRIST
 
Posts: 69
Member

Thanks to everyone who replied so fast to my post. I was amazed at the love and caring out there.I am new to this so it takes me a while to work out how to use this way of talking to others. I have had 2 scanlian nerve blocks in my neck but these only gave me 1 hours relief.I tried a ketamine infusion but this had me spasming in my chair at the hospital like I was being electrocuted.One of the nurses who came running went to stroke my arm to reassure me and she didn't know that the CRPS had gone up to my shoulder.My bad that in my original story to all of you that i hadn't told the whole story about my injury. I have CRPS from my left wrist up to my left shoulder, which is now going into my right wrist.My occupational health worker who is trying to get me back to work is trying to tell me that I am not getting it in my right wrist and if so then it is not from the original injury.Luckily my G.P. who has seen several cases of CRPS set her straight on this( I hope).I am always so tired because I roll onto this side when I am asleep and this constantly wakes me up.So pleased to be able to talk to other sufferers.Nearly everyone where I work is on my side especially when I show them my party trick of CRPS. I have found that if I put a pen lid down if I don't look at it I can pick it up but if i look at it, as I go to pick it up my hand starts shaking so I cannot grab it.Oh yes I also have had nerve conduction tests which show that I don't have Parkinsons or any other neurological problems. so cheers to everyone out there for talking to me and giving me some hope.

12/01/2011 01:33 AM
maddiesgram
maddiesgram  
Posts: 2330
Senior Member

Wow, Leftwrist, that is a strange "party trick". I don't think I really have one. Just showing my weird foot is probably enough! You sound better and more hopeful or less sad. I know those things can go up and down pretty quickly as the pain does. I hope you'll be able to keep your pain down well in the coming days. Oh, did you get any relief from the ketamine infusion? Would your health insurance pay for it? Good luck as you continue down this RSD road... keep coming to this group and reading to learn much!

gail


12/01/2011 02:03 AM
LEFTWRIST
 
Posts: 69
Member

Hi Maddiesgramm no the ketamine did not work as I was 40 minutes into it when I had my reaction to it.The insurance company under workers compensation paid for it as well as a psychologist and 6 trips to the pain management center.Look I have gained more relief in talking to you and others on this site then anything that the doctors have been giving me.The sad part is that everyone says that they understand but until you have this no one really understands the pain we are in 24/7.Love hearing from you.

12/07/2011 10:18 PM
mama1111
 
Posts: 25
Member

Hello left wrist,

My name on here is mama and my rsd is my right wrist and thumb from my injury.I had surgery and now I have no use of thumb and very little use of my right hand thumb and it goes up my arm to my right shoulder.It seems like it may be spreading to my right hip,thigh and knee also.I feel really bad for all the pain that you are experiencing.I hope you have a good PM doctor who will try to see if you can get this reversed for you or at the very least to be able to help you be able to cope with the pain.Try to stay in touch with all of the people in here.It is a wonderful feeling to know that you are not alone in your fight and I will be cheering for you hoping that you can get the relief that you need.I will talk to you soon.....Mama


12/07/2011 11:59 PM
ghostofpast
 
Posts: 10
Member

I'm having bad day today, but reading these posts here make me realize that a whole lot of people have it much worse than me. That's when I start crying for being such a baby about my own.

12/08/2011 01:46 AM
maddiesgram
maddiesgram  
Posts: 2330
Senior Member

Hi ghostofpast,

I do the same thing. I will cry and cry about my pain and situation, and then realize that my situation could be SO much worse. I'm sorry that you're having it bad today, though. Just because someone else might have a worse situation, it doesn't mean that you are wrong to hurt or be sad. I'm sure you have losses and things that have been really painful. We all have here which is why this group works well because others can understand.

What's going on to make your day so bad? Are you OK? Keep coming here and talking to us, OK? We all need each other and we can get through this together.

Sending a hug,

gail

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