Loosing my battle with CRPS?
 

It has been 15yrs since my initial accident. It only took the V.A. doctors about 14 1/2yrs to diagnose me with CRPS. They finally snet me to a pain management center who claim to be one of the best with treating CRPS. A plan of action was set and everything was a go and I was on board. However two months later everything has stalled and they are unsure what the next step they should take is going to be. I have been on medications from the start, and they have tried the nerve blocks with no success. I am really considering amputaion to get rid of the nightmare, am I wrong in thnking this way? Or do I stay the course of pain and misery and medication? I am lost and lossing hope and so is my family who is also struggling in this nightmare with me.

I'm sorry to hear of your pain and frustrations.... :(

I have been dealing with this MONSTER far less than you... me = 7yrs.

I have like you, considered amputation... actually I have BEGGED and PLEADED with the doctors to amputate. I was told NO!!

Neurologists have told me that the limb would be gone but the pain would remain as this is really not a problem in the limb itself but in the sympathetic nervous system and the brain. The limbs affected are the place where the symptoms and affects of this monster present.

While I don't know the medications or other things that you have tried... I sincerely understand where you are... Medicines and/or therapies either don't work or they do but not as good as we would like and then there are the side effects. All of this is VERY frustrating!!!!

One would think that something as PAINFUL as RSD/CRPS, that was first diagnosed during the Civil War... would have a cure fould by now...yet, there is very little that can be done in the big scheme of things.

Ever feel like a guinea pig being tested on... kind of a let's try this or this or this..... or so on????

I am seeing a new Neurologist (2 visits so far) and from what he has told me there are things for RSD/CRPS that are being researched and either are just starting the trial process or will be soon.
(As these are new things and not made public yet he was unable to tell me what was being examined, tested, researched, as of yet.)

Please consider all factors before deciding on amputation....
Wishing you all the best.
:hug: Gentle Hug...
Abbie

I'm so sorry that the V.A. has let you down so badly. That really stinks.

As Abby has told you, amputation is not reputed to be the answer. There is a search feature on this board, you can use it to go back and read many threads about the subject.

Ketamine infusions have helped me get some of my life back. Ask your pain management doc about them.

Please take care, and good luck, XOXOX Sandy

Abaski said what I wanted to say better than I could have.....your limb isn't the problem. Your nervous system is permanently screwed up. Amputation won't fix that and could easily make the pain even worse.

I'm so sorry to hear about your pain and suffering, Navysniper7 :hug:!

I have had RSD/CRPS since I was 12 years old (i'm now 15). It started in my left leg and has since spread to both arms and my back. Like you, I had a nerve block but it didn't help and made things a LOT worse. Before I had the block, I could walk, albeit very slowly and on crutches. After the block, I couldn't walk as I had lost all coordination in my limbs. I was left wheelchair bound for 13 months and had to go on an intense PT course to learn how to walk again.

As well as the RSD, I have other conditions including Hypermobility Syndrome (my joints bend further than a 'normal' persons), Dystonia (this is a complication of the RSD and my left leg is permanently rotated out to the side), Mycolonic Spasms (my leg shakes uncontrolabley), Fibromyalgia and have recently developed Syncope (I pass out on average 25 times a day :(!)

Like you, in desperation, I begged my doctors and parents to amputate my leg. As the others have said, I was told that it wouldn't help as the problem wasn't in the limb itself but in the nervous system. I was told that i'd still have pain even after amputation and that although it was used centeries ago, it isn't considered a treatment for RSD anymore.

I know how scary it is dealing with all of this so if you ever want to talk, I am here for you! I have lost most of my friends, can't go to school (i'm home tutored) and not many of my family members except mum understand what I am going through which really hurts. Thankfully I have a great boyfriend who I have been with for 7 months who is really supportive and has health issues of his own so that has helped but it is still really lonely and depressing at times.

Please don't give up hope (I know it's easier said than done trust me!)! As the others have said though, medical research is advancing into RSD even though it might not feel like it at times. You will find a medication / treatment that will help you at least somewhat. Yes it will be a struggle and yes there will be a lot of ups and downs but it will be worth it in the end!

Take care and i'm here for you!
Alison x

It takes time to find the right mix of medications. Try to deal with the symptoms one at a time until they are controllable. This means you need to learn your triggers as well and avoid them. Try to start medications one at a time when you can so you know which one is causing the bad side effects.

Hang in there. Amputation is a desparation play. If it worked it would be the first thing most of us would do. It has only about a 10% success rate and most cases are made worse.

Hi I am sorry you are in such a bad place. Like you and others here I too at one time asked about amputation but then there would be phantom pain. Also I think you are at risk of damaging other nerves. I too have had little relief from meds and actually treatments like nerve blocks increased my pain. I agree with others about other treatments such as a temp scs, ketamine or pump. Have you went for another opinion or approach with a pain doc who deals with rsd? I would suggest that. I know when things are so bad pain wise one just wants relief but I feel it is very important to really research the procedure or what is suggested. Unfortunatly not all docs are in it for our best interest and so why one also has to do there own research.Hang in there and hope you feel better.

8 Years & Still Fighting
 

I was diagnosed with RSD/CRPS 8 years ago. I have been to doctor after doctor and all have agreed: Amputation will do no good as the pain is not actually in the limb where you think you feel it; so I STRONGLY encourage you not to even consider amputation.
It is hard, very hard, but if you can find a doctor who will work with you, y'all can come up with a combination of drugs that will help. It may take some time, and they may change from time to time, but there are drugs out there that do work. For 1.5 years Lyrica worked great for me, then all of a sudden it stopped helping. I am not back on Ms Contin (Long Acting Morphine) and Morphine Immediate Release for break through. Though it isn't perfect, it works where I can have a half-way normal life. Don't get me wrong. I take about 6 other drugs in my "cocktail" - SEROQUEL being the newest one they added......and with these, I was confident enough to have a three level, 360 degree cervical spinal fusion surgery. I knew going into the surgery that my CRPS could flair to such a degree that I could be institutionalized, but I was willing to risk it. It has been 6 months and I am no worse than I was to begin with. EVERYONE warned me not to have the surgery...as the surgeon is operating right where the nerve center is and it could cause all kinds of problems...But I refuse to let this Horrible Condition Control 100% of my life. It controls enough of it as it is.
My advice: Find a physician who will work with you with the medications. It will take several probabably, but make sure he gives you one that helps you get at least 8 hours of sleep per night because, regardless of whether you needed it before or not, you need sleep now. Combine the sleep medication with some strong pain medications and go from there.
NOW YOUR PART: As hard as it is, you need exercise. Even if it is just a small amount. I promise you it will help if you will keep it up. It is hard and many days I would rather die than even think of exercising. But on those days, I wait until I feel as good as I think it is going to get and then I walk. Maybe just 50 yards, maybe more maybe less. Sometimes I walk in my house just around all the rooms and hallways, but I try and that makes a ton of difference. Just try it. Don't do anything drastic. There is a doctor and there are medications that will help you. I know this....but I also know it may not come quickly or easily. I spent 3 weeks in the hospital just exercising my wrist because I had lost all use of my hand/fingers. BUT, today I type this email with both hands, with all 10 fingers. There is help, just fight for it.
I am not on this sight much, but I will be more than happy to give any advice I can. I went through an entire round of chemotherapy for cancer while I have had RSD. I survived CHEMO while suffering from RSD/CRPS. You can do it.

Amputation will not stop the pain
 

The only reasons a body part should be chopped off is when you're battling chronic infections that will end you life if you don't proceed with this horrific mutilation.

After battling infections and blood clots for years I was scheduled for a bilateral above the knee amputation. The day before surgery I backed out and only allowed the left leg to be taken. The right leg is still black all the way to the knee and necrotic as all get out and still needs to go - but I'm not giving it up till I have no other choice, because I to thought that at least with the left leg gone the pain would go with it. I couldn't have been more wrong. In fact I've found exactly the opposite.

5 to 10 years ago there was a small group of doctors who were actually believing pain could be chopped off. Problem was, they were not looking at the actual location where RSD is the root of the problem hence the results were horrible. The only thing that was gained by my radical pedicure is that I can't get infections in real estate I don't own anymore. Meanwhile I'm more of a gimp than ever before. Add to that more pain and even new types of shocking pain (I mean literal shocks that do blow me out of my wheelchairs), this has been no easy ride since amputations always come with the price of less mobility.

Unless you're one of the few who actually think you'll be able to handle a prosthesis afterward I'd like to know what's gained? A fake leg will still require a very secure attachment that will apply even more pressure than you're experiencing now. Unless you can cut way high enough above the damaged area and you're 100% positive that the RSD and associated damage will never spread further, then the chances of a fake leg might just be a dream more than a reality. Shoot, just wearing the socks to shape my stump so I'd have the right shape put me on the ceiling hence I stopped using them after my now tiny upper bone/stump finally stopped wobbling around in my very short leg while it healed up inside.

While I understand to my deepest core the desperation you feel so you'd finally get rid of the pain once and for all, this only proves that your pain isn't being managed properly. My betting odds is that very few doctors and even less insurance companies will now allow this procedure/option no matter how badly you want it since there just isn't the proof it really helps post chop. I understand why you're willing to do it, but the sad fact is the odds of it working are slim at best and worse yet I know firsthand like in my case actually make things worse. Now that really scares me.

Please take care and let me know if I can help. Bob.