[jayminda]

MY WIFE HAS BEEN DIAGNOISED WITH CRPS AND I AM JUST BEGINNING TO REALIZE THE SEVERITY OF THIS CONDITION IF ANYONE OUT THERE HAS A REFERRAL FOR A DOCTOR IN THE LOUISVILLE KY AREA PLEASE PASS IT ON

THANK YOU
JAY MINDA CONCERNED HUSBAND

[reruho]

Dear Jay,
I don't have a name for you but can I ask who diagnosed her. the doctor that diagnosed her shuld be able to help you find someone. Or try your family doctor as a good source of information. Do you a teaching hospital near you?

I am sorry to hear this monster has invaded your lives. Please become as educated on this topic as you can to protect your wife. There are many well meaning but uneducated people you will come in contact with in the medical field. Trust your gut and do not be afraid to ask questions. Do not allow the to mistreat her because of her pain issues and medication.

I would recommend putting together a health notebook for your wife. You will see many doctors and having your own copies of labs, tests and procedures can be a lifesaver. And sometimes the information does not get into your records. I would start a log of her medication with start/stop dates, side effects and effectiveness. I am in the process of putting mine together on a flash drive some they can download the information they need.

I want to thank you for being so supportive. We have many on this forum with family members that are not supportive and it adds stress to their lives. Stress is a big pain trigger. Please come back and ask any question your have. We are all here to support each other. This can be a very isolating disorder.

Reta

[jayminda]

thank you very much for the advise
she was diagnosed by a foot and ankle doctor he was the 3rd one she saw after about 12 weeks of pain in her foot she injured and it was confirmed by another doctor i beleive his name was dr.whitney now she has started physical rehab and she gets her first pain blocker shot on the 27th of jan. i have been trying to educate myself on her condition but everything i read is just so awful is this condition always as bad as it seems online as of now she only has problems in her foot well and in her mood she has been very moody from mad to sad to upset but from what i read this is normal right

i have seen where if cought early there has been success with minimizing the symtoms is this something that anyone can confirm or should i be prepared for this to go on for a long time with this condition effecting her foot will she be able to walk normal again we are very active people we play pool,softball,golf,and bowl all of which you need your feet can you give me any idea on a average time frame people have this condition

sory if this doesent make sense i am a scatter brain lately my wife is only 28 yrs old i cannot imagine her having to deal with this thing long term she has already been on crutches for about 12 weeks and i can tell that she is becoming overwhelmed and i don't know how long i can keep her spirits up

again thanks for your advise and good luck to everyone

jay minda

[reruho]

Whoa! Please don't assume that everyone is so severely afflicted from what you read. I am one of those that has what is classifed as mild to moderate case. I am still able to work and function quite normally. I attribute that to an early diagnosis, aggressive phyiscal therapy and the proper medication.

I am very happy to hear your wife is in PT, it is one the best things to help with this. How is desensitizing her foot going? That is very important. I did mine with touch. I would just stroke my arm repeatedly all through the day. I continued until I was able to put lotion on and scratch my arm. Her PT may have her work with different textures. This will be a constant battle. Self driven desensitizing is the most effective because you don't have the time delay between the pain threshhold and saying stop.

A word of warning about PTs. Find out if they have any experience with RSD, this is very important. We have very different needs and precautions. #1 is NO ICE. Ice will cause more damage to her RSD limb. It may make it feel better initially but it is actually doing damage to the myelin covering on the nerve. Dr. Hooshmand's website (www.rsdrx.com) has an excellent explanation. #2 NO PAIN IS ALL GAIN. We walk a fine line between doing too much and too little. It is a very fine line and sometimes it is very hard to see. I am an advocate of doing smaller amounts more frequently. I did my PT routine 4 times a day. I did enough to work the muscle but not to exhaustion. If her PT is causing her pain afterwards then she maybe doing too much.

Another thing that is important is a healthy diet and proper sleep. Sleep is often a problem because of the pain. Many of us have chronic insomnia which can lead to bouts of depression. Please remember the RSD CAUSES DEPRESSION, DEPRESSION DOES NOT CAUSE RSD. You said your wife's mood has been swinging, that is another part of the disease. #1 this disease affects the limbric system of the brain. This part of the brain regulates moods, sleep and many other things. And, #2 Your wife is in mourning, she has lost her old life and she is looking at a life of disability and pain starting at a very young age.

I urge your wife join a forum. A forum like this one can help with your sanity. The support is wonderful. She can ask questions about any part of this syndrome. She can vent about her life, her doctor or her mood to people that understand and have been there. She can learn about research and treatments.

Reta

[dancingirl]

Dear Jay Minda,

I also was recently diagnosed with RSD, approx 10 weeks after surgery on my dislocated little toe. I felt like you after reading posts on-line, disbelief that I might eventually be going through the hell that so many experience. But knowledge and an early diagnosis is really in your favor. I might be fooling myself, but I think I've gotten better already. I am doing daily stretching, massaging, yoga (easier stuff than I used to do). I am seeing my massage therapist and chiropractor regularly. I was reluctant to take too many drugs, but I have gone on Elavil (antidepressant) to help with the anxiety, depression and insomnia. Approx 1 week after going on this my intense spasm-like pain subsided. Now I am walking much better, albeit slowly. At night I still have swelling and burning, but the Elavil helps me to get to sleep, and in the morning it's much better.
I am also remembering about 20yrs ago that I twisted my ankle, and it took a very long time to heal (almost 3 yrs) I think in hindsight it may have been RSD, but eventually I did recover fully.
I just felt compelled to post, because like you and your wife, I was overwhelmed at first, but now I have hope that I will be able to lead a fairly normal life.

[reruho]

Jay
How are you and your wife doing? I hope she is doing better. Post and tell how things are progressing. This cold weather has been taking a toll on all of us.
Reta

[hipnochik]

Hello, Jay and welcome!

Your wife is lucky to have a husband who is so obviously caring and supportive. My husband has been my rock since I was diagnosed 6 months ago. I had it in my left leg following an injury while working as a health care aid, it has now spread to my right leg.
I can tell you that I understand your sense of fear and helplessness, and the best thing that you can do is exactly what you have been doing. . . educating youself, (knowledge is power!) and to be supportive as you are.
I know that it makes a world of difference to me to know that my husband is on board and has my back.
Unfortunately, the mood swings and depression are all a part of this crazy disease. As Reta explained, the disease affects the limbic system which can cause so many mental side affects on top of the physical hell that anyone with this monster experiences. As Reta said, (and she is an awesome lady who knows her stuff!) The limbic system controls mood, sleep, self- motivation and pleasure responses, which would make sense if your wife's emotions seem all over the map.
I know from my own experience, that I couldn't fight this thing without Chad's love, support and PATIENCE!! LOL I don't know how he puts up with me some days when I am having a bad pain day. . . It's hard to watch somebody you love suffer, my doctor wisely said, "If the situation was reversed, you would gladly take care of him. . . this is where the 'For better or worse," comes in!
You can be a huge comfort to her just by assuring her that no matter what, you will stand by her and love and comfort her always, simply just listen to her when she is hurting or depressed and I get the feeling from your post that she has that in you, which will be the most powerful medicine she could ever ask for : ) I go through periods where I feel like I am a big burden to him as I can no longer work. I worry that he will be less attracted to me because the woman he married 7 years ago was ambitious, successful and fit and now I am forced to use a walker in the house and a wheelchair when we go out, which isn't very often anymore due to my pain and imobility. The meds have caused me to gain weight also, and you know how we women are about our appearance! But. . .that being said, he always makes me feel loved and adored, which makes all the difference in my world and in my battle with RSD.
As Reta said, cases vary and so do symptoms. Truthfully, and I don't want to discourage you but this is a chronic, progressive disease and I don't know that it is ever completely cured but that doesn't mean that there isn't hope! Some go on to lead productive lives.
You are fortunate that she was diagnosed early, so physiotherapy and the proper meds are crucial. As far as finding a doctor in Kentucky, I would try googling and asking the doctor who diagnosed her for some direction.
In this support group, we are by no means doctors, but I can assure you that some of the best advice, information and support is right here and you will find youself in the good company of kind and loving people who are always happy to share their advice and support, so stick around!
One last piece of advice. . .Be good to yourself and take good care of you too! This is happening to you as much as it is to her!

Take care,
Kelly

[reruho]

Great advice Kelly. Caretaker often forget about taking care of themselves.
Reta

[hipnochik]

Thanks, Reta

How was your day? Church is definitely a nice way to end/start? a new week. I hope you are feeling better and recouping from your fall.
Yes, caretakers often get washed out in the mix and yet they deal with so much. I learned this from my doctor who makes a point at our visits, Chad comes to all my appts. and my doctor will always ask him, How are YOU doing? Sometimes, when I am unable to get out of bed and I have a scheduled appt. to refill meds, Chad will go in my place and is able to vent to him. He has broken down more than once and my doctor will spend a half hour or so just listening to him. We are very fortunate to have the medical professionals on board that we do.
I am so happy for you that you are able to drive and work. I can't drive because of my jolts and just getting in and out of the car is an effort because Chad literally has to help me get seated and then pick my legs up and "swing" them into the car. I still can't figure out whether the jolts are from meds or RSD. What do you think? It is the strangest sensation! If I am mentally active, it is fine but as soon as I just relax and say, stare at the TV or computer, BAM! arms and legs shoot out and I feel like I have been electrocuted, not painful, just jolting.
As far as the neuro I saw last week, I am not going to let him get my hopes up that this is not RSD because I know all too well that it is, but if he wants to continue to test, I'll do it. . .got nothing to lose, right?
I am dealing with a new issue, maybe you can shed some light. . .remember I was telling you that my left arm was numb/tingly, can grip a coffe mug, but can't get the lid off of the toothpaste or pick up a pill. Well, we mentioned this to the neuro last week who examined my arms and hands and told me I have (get this. . .) "Ape hand!!" Sure enough when I look at both hands, the left is different in that my palm is protruding and my fingers are slightly bent. . .like a monkeys! Great. . .what next? I wonder if anyone has heard of this and is it RSD related??

As always, I appreciate any input!
Take care, gentle hugs to you all.

Kelly

[reruho]

Ape hands?????? That is a new one for me. I guess I will have to do some research on that.

I have been having problems with my left hand. My thumb has been hurting at the joint and has that lighting bolt sort of pain. I noticed today that hand is swollen, it isn't a large amount. I lost some of the wrinkles in my hand. I am watching it. I know my husband was worried because he asked me If I neded to go to the doctor about it. I don't know if I hit it when I fell and this is a delayed reaction.

Church was quite nice, even though I was exhausted. I came home and went to bed for 3 hours. We had a 40 member choir in doing a special concert (Requiem Mass) this evening and we were hosting a reception. I was just too tired to go. I took some platters in and stayed for 30 minutes. One of the guys was going to drive me home but I protested. I live about a mile and half from the church. I came home and put my nightgown on. It is really a beautiful church. You can see it at www.goodshepherd23.org . I think we just celebrated the 70th anniversity in this building. Our church has a pool and if you grew up on the westside of Jacksonville, you learned to swim at Good Shepherd pool. The kids from the middle school would walk the 2 blocks to the pool.

Driving has not been a problem for me, riding for more than 30 minutes can be a problem or rough roads. Wednesday, I noticed a tremor in my hands while I was out thrift shop shopping with my daughter. She was a little nervous about me driving with a tremor. I have to remember to put that note on my calendar so I can remember to tell my PM when I see him next.

I am actually what you would classify as a mild to moderate case, according to my doctors. On medication I ca live a pretty normal life. I have noticed a decline in the lasr few months, very small things. But small things have a way of adding up. Like my hand, I never had any problems with my hand. The RSD started in my wrist and went up my arm and stopped at my shoulder, never down.

I tried writing earlier today but my brain was numb and it was so hard to even think. I have had very serious insomnia. I am sleeping every other night and I think the numb effect was the long term effect. I have never had it this bad. It is usually once a week.

Reta