It is nice to see that someone is using the information I posted to start a discussion.
(see the thread- "Visualizing the pain of RSD" originally posted on 9/2/03)
To get this discussion started, let me say that when I first saw the Index a few years ago, I was blown away that RSD pain-causalgia- is the most excurtiating pain that a numan being can experience.
I knew that the burning in my foot and thigh was not your average run of the mill pain. It was much more intense and overwhelming than any pain I had ever experienced.
I have had people ask me "what does the RSD pain feel like?" About the only answer I have come up with that even comes close is the following. "Take your little bic cigarette lighter and light it, keep the flame burning for about 30 seconds, make sure you dont burn yourself, then let the lighter go out and imediately push the top of the lighter (where the flame comes out) onto your body part of choice." I say that this comes close, but it is not exactly like RSD, to be exactly like RSD, tht burning pain has to be felt all the way down to the bone. The entire body part has to feel that intense pain at the same time. Now imagine that pain being there constantly, sometimes for hours without letting up, then you have a good understanding of RSD pain.
Once again I am glad you got the ball rolling on the discussion of the pain. I think it is important for us as sufferers to share with others what it feels like, and it is important for us to understand what it feels like for others.
Your post about the McGill Pain Scale gave me the idea to talk about how painful this chronic pain condition can be.
Thanks so much, Terry, for telling me about the McGill Pain Scale. Because I was a pedestrian struck and injured by a car while crossing the street on a crosswalk, the lawyer defending the person who injured me scheduled an IME (Independent Medical Examination) for me.
However, this lawyer refused to tell the IME doctor not to touch my left knee/leg, where I have RSD (as you certainly know, any touch of the RSD-affected body part can cause severe pain).
This lawyer also refused to order the IME doctor to inject a short acting opioid to me to decrease the severe pain caused by touching my RSD-affected body part.
I have a letter from my doctor saying that my left knee/leg should not be touched or, if that is not possible, I should receive an injection of short acting opioid.
Because of this, my lawyer will see a judge to get a protective order for me. His main point is... guess... the McGill Pain Scale. I told my lawyer that RSD ranks #1 on the McGill Pain Scale, which means it is the most painful chronic pain condition that exists. \
So you understand how helpful the McGill Pain Scale is to me and to my lawyer. Thanks again, Terry.
Other than that, I think it is important for people to realize how painful and disabling RSD is so they are more understanding with RSD sufferers and so more research on RSD can be done and, perhaps, a cure will be found.
Your story about the bic cigarette lighter is a good way to explain how RSD pain feels like. I often tell people my RSD knee/leg feels like it is stabbed by a hot poker that cannot be removed from the knee or that my RSD knee/leg feels like it is put in a fire and cannot be removed from the fire.
I used the McGill index to show my friends and family what I was going through. Most of them were shocked and later horified that RSD is the most painful of all pain experiences. However my ex-wife thought I made it up. That just goes to show you no matter what evidence you show to some people, they are never going to believe you.
My x told me that in no way can RSD be more painful than childbirth. She had been through childbirth and it was the most painfull thing ever! While I agreed that I would never personally know the pain of childbirth, I was hurt that she would trivialize my pain. I never once trivialized the pain of her childbirth.
She also told me that chronic pain was a crock of #### and that people who claim they suffer from chronic pain are just seeking attention and pity. She said instead of seeing a pain management doctor, I should see a shrink because it was obvious that I was a I hpochondriac and I was using my diagnosis of RSD as a crutch to not have to face the real world and get pity from others.
Well, there is a reason she is my x. I finaly told her that she either has to stop belittling me and my condition or we were not going to remain married till death do us part. She said "fine, I am sick of living with you and all your craziness. Move out and take all your bagage with you." She also sontneded that I was a drug addict and that I was not fit to raise a child. Sorry I am rambling here, but it just makes me so mad, to be accused of all these things by the person you thought loved you most and from whom you relied upon most for support.
I wish that everyone I knew, doctors, lawyers, parents, family and friends could be afflicted with the kind of pain I suffer for just one day, one day! Then they could better understand that CP is real, and RSD is extremely painful.
This is my first post on this or any other forum... I'm not sure I have the format right or even if there is one.
Reading about the Pain Index at another site is what started me looking for support. I have had RSD for 11 months, was diagnosed and began treatments within the first 2 weeks. The constant 10 pain has never come back and I feel myself lucky that it generally stays at about a 6 or 7. But when I read the index- it put into perspective just how awful that is living with that kind of pain. It lifted the curtain of denial-
I have a ridiculously high tolerance of pain, as I'm guessing most of us have. The index has made me look at what my expectations are of myself more closely. I am a doer and when engrossed in a project or a passion I block out the pain- and then of course pay for it heavily after. The index has helped me be more realistic. It isn't easy to be realistic, but it will make my life easier in the long run.
I describe the pain to people like a spinal headache in your foot and up your leg but it will never go away.
What do you think about sharing the index with loved ones?
I am glad I found this site/forum. It has been a lonely 11 months.
Just for today.........
[This message has been edited by dragonC (edited 09-06-2003).]
Just for today..........
The following user gives a hug of support to dragonC: kittykitty1 (11-03-2011)
Terry, when I showed the McGill Pain Scale to people, some of them told me it was not reliable and that they did not believe what it said.
Your ex-wife is just stubborn and has never been in your shoes for even a day, so there is no way she could know how you feel. She cannot say childbirth is more painful than RSD because she has never experienced RSD. Many women who have experienced both childbirth and RSD say RSD is more painful. It is obvious that your ex-wife did not care about you like you cared about her. She is the kind of selfish person that believes only her pain could be bad, not yours. Some people should experience RSD for a day to really know what it is like.
Cathy, I think the McGill Pain Scale should be shared with everyone: family, friends, coworkers, doctors, strangers, etc.
The screen of the computer showed something like "we have flood control activated and you cannot post within 30 seconds of your last message" and posted my message twice, so I erased the 2nd version. I see "flood control activated" all the time. I wonder what that could be. It is sickening to see this all the time.
[This message has been edited by SFangel (edited 09-06-2003).]
[This message has been edited by SFangel (edited 09-06-2003).]
Hmm, I have no idea what all that stuff about flood control means.
You are right, she did only care about herself, which is really quite sad.
Welcome to the RSD board, I am fairly new here myself, but already I feel like I belong and have learned so much from others. I have been living with RSD for 10 years, and I wish I could say it gets better, but that would not be fair to you or me. I have found that after living with it for a while, you learn how to cope with the pain, and how to go about doing the things you want to do. Experience is the best teacher of all. For me, life became much more bearable when I found a pain management doctor I could really trust. One who did not look at me suspiciously or speak to me in a condescending manner. He has helped me control my flare ups of level 9 to 10 pain.
Where is your pain, how did you contract RSD? Are you being seen by a pain management doctor, and if so, what sort of medications and therapies are you using to manage your pain?
Once again, welcome aboard, and anytime you need to talk, drop a post onto the board and I will try my best to help or just listen.
Terry, I'm sad to say that I think your ex was an extremely self-centered person and your illness just brought it to the fore. When you truly love someone it means you put that other person's happiness before your own. Obviously she wasn't capable of doing that.
Unfortunately it works both ways in both sexes. I think you're probably in the long run better off without her.
Please don't me angry, just an opinion from Texas way....
I am not angry at all, I believe that you are right. I never was angry about the truth of the matter, just really, really hurt. If they had a pain index for broken hearts and emotional hurt, I would be at the top of that chart too.
I believe that you were not a less wonderful husband to your ex-wife just because of your RSD. You are a good father because you love your daughter and I am sure she knows this and loves you.
Yes, you learn to live with RSD and its pain as time passes. Experience is indeed a very good teacher.
I also found a wonderful doctor who saved my life by not being afraid and unwilling to prescribe Duragesic for me.
If there was a scale for hatred, I would be at the top because I hate the woman who hurt me so much! Some people tell me: "It was just an accident! She looks like a nice church-going lady!" This woman's hurting me by accident does not excuse it in any way. I also say not to "judge a book by its cover." She may look like a nice church-going lady but she still hurt me and is trying to commit fraud by hiding her assets.
Thank you for the welcome and hello. It is so nice to be in communication with others who live with RSD.
I agree that childbirth is less painful than RSD. Having had two difficult labor and deliveries, RSD has been worse, physically mentally and emotionally. What a strange comparison. One is a healthy life giving process and the other..... I don't know how to define this yet. I find it so bizarre when people try to get into a suffering competition. Maybe that is where the pain index is helpful.
Terry- I appreciate your honesty. Coping is better than not but I still hope for a cure. I have been fighting other kinds of pain for a long time but the RSD has hobbled me. I was (am?) a dancer and the RSD is in my foot and up my right leg.
I was diagnosed in the first 2-3 weeks and began the treatments- epidural treatments, spinal blocks, lidocaine patches, Neurontin, duragesic patches, demerol, yoga, vitamin treament, healers, PT, pilates, procaine, acupuncture, OMT, cranio-sacral massage, ketamine cream compound, lidocaine compound and antidepressants. I am looking into low dose ketamine treatments in AZ. Have you heard anything about these?
The epidurals and spinals took the pain down to a 8-9. The PT and yoga helped reduce it further. I have times of the day where the pain is about a 4 and other times its at an 8. I use the lidocaine compound, darvocet and vicodin, wellbutrin and exercise and vitamins now. Is there a treatment that has worked for others that I missed?
I am lucky in one way. I am married to a family practice doctor and becasue of his contacts I have worked with very caring, understanding doctors who have never once told me its all in my head. In fact a few of them looked so helpless and hopeless for me, it made me want to jump out their window.
I have been really struggling lately and keep thinking about another RSD sufferer who killed himself in my community about 2 years ago. I sincerely wonder if his wife and children are better off.
I have tried everything I could possibly find out and some experimental stuff my husband and I reasoned out. I can share my experience with what treatments and the whys but I may be wrong on some of the "facts". This going top be a very long posting, sorry.
1. The epidural is done by an aneshtesiologist (sp) where they inject an anesthesia into the spinal area and numb the lower body. My understanding is that it is like restarting a computer that has locked up. They try to shut the nerves off for a while and see if they come back on line more "normal". WHen I said Spinal I meant Sympathetic Nerve block which I believe is similiar in theory to the epidural except one nerve grouping (the sympathtic) is targetted. (I hope I am close to coherent or even accurate) They both helped- the burning has never been as bad and the sensitivity to touch was lessesed greatly. I had 5 epidurals in the first month of diagnosis and 3 Sympathetic blocks in the first 3 months.
2. Lidocaine patches work well for me, not on their own but when I have to be alert and need to cut down on pain meds.
3.Neurontin made me crazy. It stopped the shooting pain but it seemed to have lowered inhibitions and O was a raging maniac.
4. The duragesic patches made me sick to my stomach though the pain volume was turned down low. I can't stand being nauseous.
5. PT hurt during and after but has helped keep the joint healthier. I continue a PT routine at home and do yoga but I have to take pain meds before and after. The rest of my body suffers from clenching, do you know what I mean? so I have to find some way to keep it stretched and able to relax. I also have back and neck injuries from a car accident and have to continously strengthen and stretch. Otherwise, between the RSD and the back I would never be able to get out of bed in the morning. Pain flares my RSD up so I have to keep a balance. I must keep the healthy parts of my body strong to carry the load for the damaged parts without causing a terrible flare up.
Pilates is similiar to yoga but the focus is on keeping proper alignment while doing exercises, not so much the exercises in themselves. I founf it helpful to work with someone one on one for 2 or 3 sessions so she could point out miniscule adjustments that made a huge difference in my overall health.
6. I think procaine is similiar but I don't know.
7. The acupuncture is probably what pushed my "injury" to RSD. Other docs have recommended it to me but no one is coming near my foot with a needle ever again.
8. Low dose ketamine treatments are pretty experimental. There is one doc in AZ that I know of that does it. I have been in contact with him, but might not be a candidate. They hook you up to IV ketamine (anesthesia- actually I think it was originally animal tranquilizers) for 3-7 days inpatient. It effects the sympathetic nervous system - I can send you a link to the site I researched it at.
I did have great, I mean great results with a cream compound that contained ketamine. Unfortunately, I couldn't deal with the side effects, but that isn't everyone's experience. There are a few pharmacies that make compounds for RSD, fibromyalgia and neuropathic pain.
That seems like a very long reply to your questions, but I hope it was helpful. Is there something you have tried that has or hasn't worked for you that I could look into?