Hi Fat cat
we all have a multible selection of issues with rsd,,we have pain, depression,aniety,and are losing our hope at times,,My hope is in the lord,,he said he will heal me and i Believe in him,ive just got to learn to be patient,,i struggle with this,and i like others get bitter,fits of rage at times,,anger and sometimes i dont want to live anymore,,but God has his purpose for me,,i must continue on,,i want to live,,and not just survive,,But pray,pray and pray,and wait patiently on the Lord,,we all have good and bad days,, i want to enjoy life again,,,my wife is grieving and stressed over me,,,i dont want to let her down,,ive somehow got to be strong for others,,,God has to give me this strenght,because I cant do it without him,,,,,,,,i wait on his mercy,,,theres alot of people here who will encourage you,,and so will I,,, ask antthing on this blog,,,one or more of us can relate,,,,,,your friend in Christ Jesus our Lord,,,,,,,,,,,,,bobber ,,,phillipians 4:13 we can do all things thru him[Jesus]who streghtens us

Look for the happy endings
 

Although few and far between there are a few folks on here who have had success stories, whether it be from ketamine or something else. I personally think that this condition will be cured within ten years, dunno why, just a feeling. I have learned to trust hunches, for some reason they seem to work out. I know it sounds nuts, but if nothing else, it helps me get through the bad days. Give it a try. Later, Smoke

Hi FatCat,

I hope you "visit" this message board again and stay !!! ..you'll have a support system that is here for you to find information and share tears as well as positive experiences. The fear, isolation, pain, and frustration has a place here to be heard and understood :hug:

FatCat, I hope your ace bandage isn't too tight as you don't want to constrict your circulation, and ice is not a good thing for your RSD limb!

I'm in the flip-flop club, too !I used to wear crocs but even they are impossible for me to walk in, as the nerves in my left foot and lower legs are on fire, especially the bottom of the foot. I work in an office and wear socks with my flip flops ! I can only walk a few yards ..life has surely changed for us..this board is a safe and understanding place to talk about those changes and get support and friendship. :grouphug:

My doc ordered a pair of special of shoes and/or inserts to be made on March 6th !!! and due to Worker comp 'stuff', I still don't have them!! maybe I'll get them by Christmas!!
There is only one pair of flip flops ("Mush" by Teva) that I can tolerate..other than that, it's the rubber zories ya wear to the beach..

The shoes that Mrs. D suggested sound like a good possibility..especially the one with the knitted, flexible top and removable inserts!!

Hopeful is right..it seems unreasonable and illegal for you to get 'fired' for wearing shoes that you must wear because of a disability! Check into that, or have someone help you with the research so that it doesn't happen again..

Congratulations on having your B.A. in Criminal Justice..There could be a job for you in that field on the horizon which doesn't involve a lot of walking and which would give you a lot of satisfaction!

Please try to take it one day at a time....I hope you are getting some kind of emotional support from a therapist that you can vent with and who is truly there for you...in the meantime, we are here for you!!

Hope4thebest xoxox

Hi FC,
I'm so glad you have contacted our loving family, so we can welcome you and offer any kind of support, listening ear, or experiences we have had that has either helped or hurt us.
I, like yourself, got RSD following surgery. It's a tough blow, for anyone, but being a Mom, I especially have a warm place in my heart to younger ones getting this monster. I'm 61 and have had it 14 years. Before RSD, my daughter and I were playing tennis 5 days a week, water skiing, snow skiing, traveling, aerobics, we were on the move. It was tough losing all of that, but now I'm just so grateful we got to do so much together. Our family traveled a lot, and Laura and I were enjoyed so much together, hubby too, but he wasn't into sports.
I went right into physical therapy, although wasn't diagnosed for 4 years. Had frozen shoulder and 100 therapy sessions and 100 massage therapy. torture Then remission, got full range back. I was even back to tennis and skiing, then other shoulder, more therapy, torture, and a 2nd remission. I'm so grateful as it allowed me to feel normal, planning her wedding and enjoying all that entails. We even traveled-the 4 of us after the wedding.
Laura graduated with BA also and has been a court reporter going in her 10th year. Have you ever thought of being a scopist? Laura doesn't work full time for a judge-she does depositions for various attorneys. She takes home her deposition and does the transcribing at home. A lot of reporters sub-contract that part out. So you need to learn the language of a stenographer. A lot of it is realtime. So you just need to proof it for grammar and make the transcript. People that do this have several reporters as clients and the e-mail back and forth the depo's and finished product. Laura has a proofer for grammar that goes over her work.People that do this work get paid by the page. If you are interested in this type of work, I know a couple ladies that do this work. I have no interest for myself or my daughter, just idea of work that people can do at home, and at a pace that matches your ability pain wise.
My daughter likes the freedom of the work. She works for a firm that has about 20 reporters. If you are interested in speaking to someone who does this work, I can get a phone number for you. Again, there are certain jobs that you can be at home and on your bad days have the freedom of not working. Regular jobs have a turn around time of 10 working days, Then there is the 5 work day turn around then there is the next day job.
On one of our trips, I bought a shoe called mephesto. It's a sandle type shoe that we walked everywhere on. They are a wonderful walking shoe,@$200, but that's all we wore for 3 weeks in Europe-before RSD.
I going to try the HBOT as soon as I grow our business back. The economy took a toll on us, so I need to build it back up. My Dr. just built two clinics and each has a HBOT in them. When we get our finances back up, I'm going to go thru the series and maintenance schedule. It's about 5 minutes from my house.
Do you have a Dr. that you like? This is the best I've had. He is a neurologist, psychiatrist, and pharmacologist. My meds are regulated now and I'm sleeping. I also have fibromyalgia, and Trigeminal Nerve Disorder. Some days a pretty tough.
For me, swimming has kept me mobile. My toes were curling up off the floor, and my Dr. had me dailey exercise them and in about 4 months they touched the floor again. Massage therapy has been really good for me. I'm not saying it wasn't torture to begin with -it was. I went thru desensitization also at the hand therapist and home. I was misdiagnosed before I was correctly diagnosed at the 4 year marker. So I have a partially crippled hand. But I took 5-6 plastic bowls and put cotton balls in one, sand in another, coffee grounds in another, rice in another and so on. just different textures. Very slowly would put my fingers and toes thru the bowl. It's a slow process, but pays off. Swimming, or just moving around in a pool-the water should be 86 degrees. no problems here it was 114 degrees today. Night temp is in the 90's. We need to throw a few ice cube bags in the pool!:D
You'll find so much love, humor, kindness among our group, please stay with us.we really do care and don't want anyone to feel alone. We all have our sad days so never feel you can't tell us how badly you feel.
I've been seeing this counselor 5 years now and back in the 80's when my parents died, I went into counseling for a couple years that helped me a lot.
He wasn't the first one I found, but he was a wonderful counselor. I learned the value of journaling. It is such a release of emotions while writing, and even discover feelings you weren't even aware you had. One of my girlfriends went to school and became a counselor, she and her hubby come to visit us here in the desert. We live in Arizona now-moved from Oregon about 11-12 years ago. We have other friends that come every year too. Now these are friends that now I'm not up at the crack of dawn, fixing the farmers breakfast- they just want to be by the pool and swim and read and visit. They love to cook FOR US!
Please stay in touch, and let us know how you are doing. It's wonderful you family and boyfriend are supportive. I agree with the person regarding an employer not being able to fire you for shoes due to handicap. Legal Aid should have some information. I don't think it's something I'd put on my resume, but if it comes up, you could have your Dr. write a letter stating the limitations of your feet and footwear. Take care, soft hugs loretta:hug:

Hi Fatcat,

Welcome to NeuroTalk! You will meet many great people here who i'm sure will try and help you in anyway they possibly can so please feel free to ask any questions you may have - were all in this together!!!

I'm so sorry to hear about everything you have been through and are continuing to go through!:hug: I really hope you are able to find something that will help you real soon.

I'm 14 so understand how difficult it is living with a chronic pain condition at such a young age. I was 12 years old when I got RSD. It started in my left ankle, then spread to my right arm after I fell and to my left arm in the beginning of this year. Like you, I have tried all sorts of medications and therapies and none have helped that much.

When I was diagnosed with RSD, my doctor did a Guanethidine Nerve Block to try and get rid of the pain. He injected into my foot that has RSD and unfortunatley, I suffered from complications which put me in a wheelchair for 13 months. I lost all coordination in my leg and would keep falling over everytime I tried to walk. I had to go onto an intense Physical Therapy Course to learn how to walk again which was REALLY hard and painful but it did help a little and i'm now able to walk short distances.

Like you, I have difficulty finding shoes that don't hurt me. I went over a year without wearing any shoes or socks. It was only when I went onto the intense PT course that they made me try and wear socks and shoes again. I am now only able to wear Ugg boots as I have Dystonia in my foot (a movement disorder). I still have lots of hypersenstivity but thankfully, it isn't quite as bad as it was.

I'd be careful about wearing the ace bandage. Most people don't advice wearing them with RSD as they can make things worse. Of course, everyone is different though and what works for one person, wont work for another.

Have you seen a Psychologist? They can be really helpful sometimes in helping someone come to terms with a chronic pain condition. My first Psychologist was useless so I stopped seeing him. I now see a lady psychologist who is really helpful. Unfortunately, she is in London which is 3 and a half hours away from us so I can't see her that often but I can email her anytime I feel down or just want someone to talk to etc.

I'm glad you have the support of your boyfriend - I know how much it helps having someone that understands! I don't know what i'd do without my mum - she's been my rock through all of this and never left my side. My dad refuses to understand RSD which REALLY hurts and my mum and dad have had LOTS of arguments over it. I just wish he'd understand and come to the hospital appts with me but he wont - he's only been to the hospital about 3 times in the 2 and half years that i've had RSD!!!!

I really wish I could help you more. I know it's really hard but please, try and not give up hope - without hope, we have nothing, right?

If you ever want someone to talk to, please know that I am here for you always and will try and help you if I can because I DO understand some of the difficulties you face unfortunatley!!

Take care and I hope you feel better soon!
Alison

hey i am 27 and have had rsd since i was 16. i have it full body and internal and like you i very rarely get to a 8.. i had a morphine pump put in 5 yrs ago and it has been awesome. i am able to work part time. i am also married with 2 kids. the pain is still bad but i am able to keep mobile and do things hang around with us .. your not alone.

carrie

Welcome!

You got some good shoe suggestions from many others, so I will try not to be too repetitive, but I have two points to comment on.

If you are wearing the ACE bandage for ankle support, maybe there is some type of prescription brace that would be more comfortable. If it is for swelling, compression hosiery might be an alternative that is a bit more attractive, easier to put on and could even be more comfortable. I had some foot reconstruction surgery 9 years ago and used both of these.

Someone mentioned invoking ADA to force your employer to allow flip-flops instead of shoes. As a manager, I want to let you know that the ADA rules do not mean that an employer has to accommodate every need. The law (and judicial interpretations over the years) clearly states that the accommodation must be "reasonable." If there are safety issues or other legitimate reasons why an employer cannot allow your preferred footwear, they might be allowed to enforce their rules, no matter what.

This does not apply in your case, but another example is an ADA request that would be very expensive and would disrupt business. A large business might have to spend the money, but a small employer might be able to show that the expense in unreasonable.

If you need to go down that road, be aware that the court will weigh both sides of the issue and decide what a “reasonable accommodation” is. Also, if you are talking about a smaller business, do you really want to work somewhere where you had to take the boss to court to get a job? At the least, that would be awkward. You might be better off looking elsewhere.

Good luck to you.

Mike

Desensitization therapy
 

Hi, I don't know if you have had desensitization therapy. My husband has one foot severely involved and our last doctor agreed to prescribe the therapy. It takes a long time, but you can do it at home after getting instruction from a PT that specializes in it. It involves introducing the foot to neuro stimulating objects - silk scarf, dried beans in a foot sized bowl for only a minute or less. The first time my husband did it his whole body went into total uncontrolled spasm with excruciating pain. Now the pt can rub his foot with lotion and do some lymph drainage to reduce the swelling in his leg. the idea is to teach your nervous system that not all sensation is pain. this has helped the skin on his leg look tons better. He has far to go, but is definately seeing progress. Take care, Sweetheart.

What bothers me about the thread is fatcat11188 only posted once and that was back in 2009.