my last few months of hell - have to ventPosted by rekha on 4/23/04 at 19:38 (149445)
In January, I was pregnant for the first time in 10 years, few days after finding out, broke into new pair of orthotics for pregnancy, worrying about foot problems coming back. after two days felt some tingling, burning pain in front of foot, podiatrist suggested I ice the area, cuz he couldnt give me a cortizone shot during pregnancy.
I vigorously iced the area and burning started to increase, I kept on icing icing icingg.....burning started going up the leg, the more the burning spread, the more I iced. I finally stopped after I felt burning in my other foot and hands..the burning fire rapidly started to spread up my legs and arms...couldnt figure out what was happening, my family thought I was over reacting...'it's pregnancy symptoms' My psychiatrist uncle told me I was a hypochonriac. My hmo couldnt figure out what was wronng.....I couldnt sleep at night at all...My whole body felt like I had been set on fire....I couldnt believe it....I couldnt take any med's...
Finally went outside my hmo to a pain specialist and she dx's with RSD. apparently ice causes rsd to spread. I was in so much pain that I at one point became suicidal. (suicide rate for rsd is very high)
I have full-body RSD and am having blocks, lidocaine infusions, and am on 22 med's per day. I lost my child in march, and doctor says I shouldnt ever think of becoming pg with RSD. so that dream is gone, and now I will live a full life with full body rsd and chronic pain. I am only 34
It took a while for me to accept this and other things, but now I have accepted my life.
To top it off, my heel pain returned with a vengeance. in both feet.
just had to vent. it all started in 1998 while running which started my foot problems and has culminated to this horrific disorder. Oh, if I could do things differently
unfortunately there are no second chances in life.
Re: my last few months of hell - have to ventjohn h on 4/23/04 at 19:54 (149446)
Rehka it seems you have reached the bottom and there is only one way to go from here and that is up. Take it one day at a time and do not try and think to far ahead. It can only get better but will take patience and venting and more venting. Form a plan in your mind with your Doctors advice and follow it. Others have been where you are and have posted on this board. I have seen them rise from the depths of hell to a near normal life. Do not give up. Your fight to get well begins today.
Re: my last few months of hell - have to ventPauline on 4/23/04 at 20:39 (149447)
I don't think anyone can respond with better advice than the words in John's post. Please know that your part of our heelspurs family and we will always be here to listen and provide encouragement.
As John said 'don't give up' Work closely with your doctor and follow his advice. I'll kept you in my thought and in my prayers.
Re: my last few months of hell - have to ventSuzanne D. on 4/23/04 at 21:36 (149452)
I hurt for you as I read your post. What an ordeal you have been through! I am so sorry.
John and Pauline are right: don't give up, Rekha. You have done a very good thing by telling your story to us. Keep telling us whatever is on your heart and mind and know you will be met with acceptance and understanding.
I hope Tammie and Wendy and others with RSD will see your post and respond to you. They can help answer questions and guide you in areas that they understand through experience.
You are in my thoughts and prayers.
Re: my last few months of hell - have to ventEd Davis, DPM on 4/23/04 at 23:54 (149457)
I feel sorry for what you have gone through. I am unsure how a doctor could make a comment that you should not become pregnat with RSD as I assume you were not informed of your diagnosis before pregnancy. Are you being seen by a pain clinic? Is a spinal stimulator being considered? How did the RSD manage to spread so far? - it had to start somewhere?
Re: my last few months of hell - have to ventrekha on 4/24/04 at 00:16 (149461)
Pain Dr's think that I had a form of neuritis in front of my foot (metatarsal area) and icing along with pg hormones caused the rsd to spread fast. RSD can spread with ice. If only I had known. They say I am the fastest spread they have ever seen.
I found out during my pregnancy. when my pregnancy ended, I was a little relieved cuz I could take something for the immense pain and something to sleep. RSD patients are advised not to try to get pg. Especially with full-body RSD.
I honestly dont think I can go thru the pain without anything for 9 months. At one point I was praying for death. I have been to hell, literally, hell would probably feel like your body burning like you have been set on fire. Sensitivity to a breeze, cold, the air conditioner. I cannot even go into the theatre to watch a movie anymore due to A/C, can't go to the store with A/C. I dont know what I will do when winter rolls around.
Life has not been fair. what dreams I had. all gone
Re: my last few months of hell - have to ventMax K on 4/24/04 at 01:23 (149468)
Wow. Rekha, a valued friend of mine has RSD. I have been looking for a cure on the internet for the last few years. The most promising treatment that I have found is low-dose ketamine, read about it here: http://www.rsdhope.org/ShowPage.asp?PAGE_ID=82
Unfortunately, there are only a few doctors in the world who do this. Dr Harbut is trying to get it FDA approved and is doing a grant - study, he is not accepting any new patients right now. Dr Schwartzman in Philadelphia does it, but there is a long wait, also Dr Kiefer in Germany does it (low dose, and also the high dose coma technique that is not allowed here). I think that there will be a breakthrough soon. Consider that Keith Orsini had RSD for 29 years, and now, after the treatment, his pain level is at 2.5, down from 8. That is amazing after 29 years of level 8 pain. Luckily for you, you were diagnosed early, perhaps still within the 'treatent window' of 3 to 6 months. There is a real chance of remission for you, but you'll probably have to learn more about RSD than your doctor knows, RSD patients commonly complain about doctors who have never even heard of RSD, much less were they familiar with the latest treatments, so that's what you're up against, I hope you are able to read a lot despite your pain.
Here are some links for you:
RSD National Awareness Campaign, founded by a ballerina whose career was cut short by RSD: http://forums.delphiforums.com/forgracenac/start
RSD message board: http://brain.hastypastry.net/forums/forumdisplay.php?s=&daysprune=&f=221
Re: Rekhawendyn on 4/24/04 at 14:02 (149483)
Rekha, I'm glad you took the time to vent - sometimes it can make us feel a bit better. I'm also glad that Suzanne posted with my name, so I got a chance to read your post.
I've also been diagnosed with RSD (although my doctors are arguing about that diagnosis now). I also iced a lot (because that was the only thing that seemed to relieve the pain) and the icing did in fact seem to make me worse (I never ice any more).
Rekha, if I'm remembering right - you and I emailed each other for a while a few years ago...is that correct?
I'm very sorry to hear about your RSD diagnosis, but I am happy that they identified it and that they're treating it agressively. Is the treatment helping at all?
Re: Rekharekha on 4/24/04 at 15:40 (149486)
yes Wendy you are right, we emailed each other few years ago re my possible tts, which turned out to be wrong, my tts-ish symptoms dissapeared, it turned out to be temporary.
I am very devestated with this RSD, especially cuz it spread so fast due to my icing. no one believed me in my family, and I will never forgive them for that. When I was diagnosed I felt vindicated.
when I was at the high point of pain, the RSD burned every part including my head, I swear I wanted to die. Things have drastically improved since then. The med that really helped was percocet - a narcotic. I am now going to try oxycontin. Dr's say if I get addicted to these drugs, so what at least if it can give me some part of my life back. Most rsd patients take narcotic type med's
Wendy, where is your rsd? since both of us have foot problems in addition to RSD, maybe we could become online support buddies.
Re: Rekhawendyn on 4/24/04 at 16:54 (149487)
Rekha - I have RSD symptoms in both feet/lower legs. They are NOTHING like they were a few years ago.
At it's worst, it was like you describe...horrible, intense pain. Sheets hurt. The slightest touch hurt. I told my son (who was 6 or so at the time) that it hurt when he looked at my feet. I was only half kidding.
For whatever reason, the intense pain started to let up. Maybe it had something to do with the acupuncture, maybe it was just time.
Now, I have periods where I do not have any RSD symptoms at all. Then, (sometimes for no apparent reason) my feet will be very hot, red, and puffy. It always lets up after I've slept. It's a nasty reminder of what that pain was really like. I always say that I'll take the TTS type pain, I'll take the aches and arthritic pain, but that burning is just something that I CANNOT stand!
It is only about a 3 or 4 compared to the 8 or 9 that I went through 4 years ago.
The surgeon I saw in December is not sure if I have RSD, although she feels it sounds like RSD symptoms. She believes it's some type of vaculitis/rheumatoid arthritis pain.
I no longer really care what it is, but it would be nice to know for sure.
I'll always be around the board on and off (lately more off than on).
I have a trigger word set up with my name, so the board fires off an email to me with any posts containing my name in the text.
Take it easky Rekha, and please keep in touch.
Re: been there can I help?Tammie on 4/24/04 at 17:59 (149489)
I have to post to you but this has to be quick as I am in a flare myself, but I need to tell you I understand what you are going thru . I felt simply awful to hear about your expierance as it is such a painful diease for some and some just dont have all the symptoms and get caught early enough to treat! But there is HOPE!!!!! I have been going thru this for some time I dont know if you have followed me at all but have been threw alot myself.
I have a spinal stimulator ,like Dr. Davis I believe was sugesting to you, It is something that can work very well, but it also sometimes doesnt work exactly how you anticipate it to and NOTHING cures this as I have found.But the whole idea is to contain it to as little space as possible!!!! I seen you over on the rsd board and had been reading about you ,I am glad you are there as it is a wonderful site to learn and get some support threw all of the tests treatments and turmoils ahead! The one thing I want to say tho is YOU YOURSELF have to keep a positive outlook and not give up as it to makes a HUGE difference in treatments and learning to live with a chronic illness.There is so very much I would love to share with you ,as I have just made this trip and continue trying and trying to find out what it is that my body needs to help me live a more WHOLE life. I spend alot of time in pain and confined to bed or a couch or chair and unable to do simple things like cook a meal,do laundry,dress my self some days and even shower myself.I must say I am not lazy and I am not having problems with all of this because I DONT want to do thease things it is because my body has not found the BEST treatment yet to allow me YET.
The good news is tho I have made PROGRESS and it may seem very small to some but to me every little bit is SOMETHING closer to returning to productive life! There are so very many things that are out there to help and it takes time effort and patience and most of all SUPPORT from anyone you can get as it can be the most lonely time of your life! Thease message boards are gifts from God for us.I would be no where and maybe that word you used sucide I was there also. Actually If those times when you get that low means to get on line right away find a friend it helps so very much . Please dont give up, and feel your life is never going to be as You can and will have it back . Maybe not in same capacity you once had, but still something you can deal with and live happiely with and not the fear of the ugly words of sucide in your life.Remember you have to fight if not RSD wins and noway can you let that happen.
I am sorry to hear about your loss, I really am I did not loose a baby from this But I have lost a baby and so I do know how it feels somewhat.But Everything my Dr.s and specialists say say that women CAN have safe pregnancies with RSD. It just means you have to take time FIRST to get it calmed down and in a area of containment so that it can be possible for it.I understand about the ICE and oh yess badd for RSD but then again people ARE different I have had some with RSD tell me that it is bad but it helped them ,not me it is poision to me and my body.Heat is my friend,but at other times heat is bad to so you have to work and understand YOUR body and know no two cases are alike.
It takes a good Dr. and staff I (found pain management Dr.s) seem to be well equipped with knowledge and care of how to try and keep me comfortable as can be. They are my lifeline between Pain and saneness! I kid you not. YOU have to find a Dr. or DR>S that you trust and know about RSD so that they can make a plan to work with if they dont have a plan get going find another as most likly you will fight for everything. Please I do know about this.Never give up as there is always hope.With this you will find you may have to have some help with emotions such as antidepressants, they to are wonderful and I hate pills. They have made a differance in MY life and my feelings tho nothing is perfect and I still fight EVERY day .I am a fighter and I will keep on .I want to talk more with you if you like email me or post me yours or we can talk here if you like.
This is why i had hoped Scott might have added a area for this RSD , as it seems to go with this foot stuff! It is something that needs more attention as it mimics so many other things and is mistaken for other things and even it is mis diagnosed ofton so it needs to be talked about also!I keep hoping someday it is added here. Hang in Rekha you will get through this.If I can help in ANY way please ask.Id be happy to tell you any test I have gone through or any treatments and about the spinal stimulator, meds that I have tried and what else there is.I also can be a ear or a shoulder with support and understanding of knowing what you are going through. But you never have to be alone with this as long as you can be ONLINE. There are the best areas to learn and make friends.My Dr. even knows about some of thease areas and he is the first that ever told me that it is GOOD to do.Not threatened at all.
My heart feels for you my friend and I do hope that the burdons you feel will someday be lifted and you to will be looking to help others with your knowledge as it feels good to share and help someone who you see has felt just like you.Take care and get your rest and keep the stress down as it contributes to the cycle of pain. Tammie
Re: my last few months of hell - have to ventTammie on 4/24/04 at 18:01 (149490)
Thank you for the alert of someone in need, I hope I can help in some way. I still wish we could get a area here about RSD. Thank you and hope that sun stays out I was in Ky with my son last weekend.Now the revcovery from the trip lol! I thought about you while there.
Re: my last few months of hell - have to ventmarie on 4/24/04 at 18:10 (149491)
I am so so sorry to hear all that you have been through in the last few months. My heart just aches for you. You are in my thoughts and prayers. Please know that we all are hurting with you. Do not hesitate to vent....chat or cry if you need too. Let us know if you need anything.
best wishes marie
Re: my last few months of hell - have to ventKathy G on 4/24/04 at 19:29 (149495)
I'm so very sorry to hear of your pain, both emotional and physical. You have had a horrible time and I hope that you find help soon. Tammie gave you some valuable information and Wendy is also a great source of information. They're also very nice people!
May you find strength and comfort and relief from the unrelenting pain. We all care about you so come back often and vent whenever you feel the need.
Re: Rekhawendyn on 4/24/04 at 20:23 (149496)
Sorry - that should have said 'vasculitis' not 'vaculitis'
Re: my last few months of hell - have to ventbrianh on 4/26/04 at 07:29 (149544)
There are those who believe that a contributing factor to RSD is a severe magnesium deficiency. The following web site indicates that magnesium replacement therapy has helped those with RSD. Perhaps you can discuss this with your doctors.
Re: my last few months of hell - have to ventEd Davis, DPM on 4/26/04 at 14:27 (149568)
Interesting link. Topical Ketamine has been used for a while for CRPS, type 2 AKA sympathetically mediated pain syndrome. RSD is more commonly called CRPS, Type 1 and is treated, most commonly via lumbar sympathetic blocks.
Re: my last few months of hell - have to ventNecee on 4/26/04 at 18:48 (149597)
I hope it comforts you to know that I'm praying for you, and keeping you in my thoughts.
Re: thank you to everyone!rekha on 4/26/04 at 19:18 (149603)
thank you to everyone who has given me comforting thoughts and keeping me in your prayers. I need all the support I can get. I am feeling much better, but I am very scared about the future. Max: I am aware of the ketamine....I spoke to Keith on the phone about it. Dr Harbut will be conducting FDA trials in the fall. My Dr is also aware of that treatment. I hope there is a breakthrough soon.
I currently had one nerve block, but when my rsd went systemic, they started doing full-body lidocaine infusions. It has helped. I am scheduled for one next tuesday also.
I am on a lot of med's but neurontin didnt help, percocet which is an opiod did the trick. The burning pain is horrible. I am praying it stays away.
thank you to everyone!!
Re: What about Topamax for burning?Tammie on 4/28/04 at 00:33 (149684)
I am glad you are doing the blocks , they tell us that the sooner the better. We were to try the lidocain infusions also,but we did a few things before and they determined it was not my answer. But I also had trouble with the neurontin and had no luck .So they tried Topamax. Have they tried that for the burning? It also helps with sleep they say,tho my body it has'nt proved it yet but we keep upping dosage and back and forth with it.Maybe that may help???
Are you just using the percocet? or just as a breakthru med? Please watch as it has the acetaminophen in it.I was taking to many so had to change it a bit for worry over the liver they said. I use something similar but without that in it so I can take more ofton without worry for breakthru meds. Just a caution,but I am sure your Dr. knows.Just in case you take more then told.Please ask him about the Topamax!
You are doing so well! You should be very proud of yourself, you are researching along with keeping your mind open.Also working with your Dr. to find the right plan that works for you! Keep it up! You are alot more stronger then a few weeks ago. As time goes on you will find out that you will be even more able to help keep your search to find what your body needs along with making sure you are getting the emotional side help also. Feeling a bit more in control over that aspect helps somewhat with understanding that you are NOT alone ,nor did you cause any of this yourself. I am so proud to hear you sound so much better over things! Good Job and don't forget we all care a great deal about you and the support is a great part of the treatment plan.
Keeping you in my thoughts & prayers,a friend.
Re: What about Topamax for burning?rekha on 4/29/04 at 18:19 (149793)
yes, I did mention tegretol and topomax....Keith orsini said he swears by Tegretol, and other people have mentioned topomax. My Dr will probably try one of the above next.
I am doing better, thank god, because I swear, at my worst point of pain, I wanted to kill myself. I seriously started making suicide plans, the pain was that bad. I thank you for your kind words, and hope you continue on your journey towards becoming pain-free.
I am not going to let this disease get the best of me, I will fight it tooth and nail! I will survive!