thoughts and prayers please
 

I have been feeling lonely (much on my mind) of late and want to talk to others who understand...

I developed RSD following a car accident. Had surgery, ended up leaving permanent nerve damage. I have been around the block and back with all forms of CRPS treatment. I had a 1 lead stimulator trial that was unsuccessful (I got sensation in my entire body. sometimes only in limbs that did not even have RSD. My Dr. did check and verify the lead did not move). Soooo insurance finally has approved a second trial for me, with 2 leads this time!


My 2nd stimulator trial is July 10th. My 21st birthday is July 12th. I am finding each day approaching my birthday i am increasingly more depressed. (I have dealt with depression for many years- not seeing a therapist but will be going back soon).

This has been a birthday i have looked forward to for years(as most all of us did/do). After my RSD began, as you all know too well, my life completely changed. The pain leaves me unable to move hours at a time many days. I no longer able to work or attend school. My social life is hardly existent. ( RSD combined with multiple other health conditions all created/worsened by the MVA have overtaken me). This month one of my best friends committed suicide. It all feeds into my depression which hasnt been to this degree in a few years.

Smaller issues have also put a damper. I am very frustrated from gaining weight(heaviest in my life). SO, now my clothes are too small, and they say it's part due to meds. i'm on but no matter what, its hard to accept.(just not high priority right now). I have a hard time working out (i pass out multiple times a day,and after my RSD will leave me frozen and unable to move for what can be long periods of time).The pain keeps me up many nights. As we share the daily difficulties that others don't give a second thought to.


i know my problems aren't ^$@! compared to many of you on here(and I truly apologize for seeming so gloom). I really thank you all for being on here. Reading posts helps me feel connected. If you happen to think of me please send a prayer my way.

Love and peace

Leggies

Yes, I will pray, and keep you in my thoughts
 

Living with CRPS is a nightmare and each medical failure makes it worse. I understand. In March a brain aneurysm was found incidentally, so the doctors want me to have it coiled and stented. One third of these coiling procedures have to be re-done, plus there is continual monitoring. The stent and the coils are metal! I have made myself crazy going over this, but the fact is worry and over thinking doesn't help me. It only makes my situation worse.

I am trying to move forward by going through everything in my house, not all at once, but small goals at a time. It is a slow and often physically agonizing process, because I cannot carry much. But even though I move at the pace of a tortoise I have made my possessions fewer and my life lighter.

Try watching some YouTube mediation and self hypnosis videos. Try chanting or singing. Watch funny movies.

How do you occupy yourself?

Yesterday I had a PT consult. She was CRPS knowledgeable. Her plan includes mirror therapy. Have you heard of this? As I said in another post I am willing to try anything.

My husband bought me an InMotion pedal/elliptical which I use sitting. It is a versatile item that can also be used standing with a cane or walker, it has a small footprint. I am also waiting for a gizmo called WonderCore Smart to be on special. It looks like something that could help me regain strength. There is little exercise I can do,because most of it makes me sick, especially anything with rapid head movements, so I am constantly looking for work arounds. Have you tried isometric exercise? Or gentle Hatha Yoga? Massage-self massage?

You must not let yourself despair, because your youth is going to help you beat this. Young people recover from CRPS.

Do you get out? My husband pushed me in a wheelchair through wegman's yesterday and it was exhilarating. I avoid going out, because I hate how I look and because I get exhausted walking with crutches. But now that I have a handicap placard and there are wheelchairs and scooters in stores I can do more.

Have you watched the Pradeep Chopra videos on YouTube? He is an authority on CRPS. I am going to use low dose naltrexone, the drug Chopra discusses. Tomorrow is the day I begin. I will let you know if it helps.

Is your CRPS cold or hot?

Please write back.

Oh dear one....to go through so much at such a young age.....don't beat yourself up for feeling down. We all need a lift once in awhile and you are smart to reach out.

My prayers are definitely coming your way and one piece of advice....find just one thing in your day that makes you feel good. There are volunteer jobs where you can call homebound elders who live alone. I did this for years and had an adopted "Grandma". I called her every day for 5 yrs just a few minutes to say hi. I got more out of it then she did but it made us both feel less alone.
It was yrs ago via the Red Cross and it was called the "R U OK" program. Do anything, write poetry about how you are feeling and post them here....so many folks can relate. Do meditation...many guided imagery meditation on you tube.

Thinking of you and sending prayers,
Diandra

Dearest Leggies,

You have every reason to feel sad, let that come on out. There is no shame in having a hard time. What you are going through is hard on anyone. Feel it, breathe deep and let it move on through. I am glad that you are planning to get back to therapy. Having that kind of support will help you cope with this. And We all need help coping.

I too remind myself all the time that it could be worse. Of course it could be worse. But that doesn't negate the loss that you have and that you feel. It is still a loss, even you get 100% better, it is a loss of right now. Who doesn't expect to be carefree, on their feet having fun on their 21st birthday?

I am sending prayers for your healing and for your heart to be held in love throughout this time. You do not suffer alone. We understand and share your feelings. Be kind to yourself and make all the allowances for yourself that you would make for a very young child. Hold yourself in love and sweetness. Try not to despair, knowing that spiritual help is on the way. Many will see your post, who even if they don't respond will send a prayer your way.

:grouphug:

Hi Leggies,

My battle with pain started in the '70s when I was a teenager - due to an MVA. Got smashed up pretty badly there, and have been unlucky with accidents and illnesses since.

You are brave to admit and confront your Depression, and I do urge you to return to Therapy at the earliest opportunity. Your Birthday, and being unable to celebrate it as you should, is a big non-event which could cause long-term damage to you, being in a Depressive State. I would try my best to make it a special occasion, even a managable restaurant meal with family/friends if you don't feel up to a party. You are only 21 once!

Any time you feel like talking about your Depression, or just want to vent, I am always about. I know what Depression does to pain and the general outlook one has, I live with a Personality Disorder.

I will keep you in my thoughts.

Dave.

Hi Leg and welcome,
I wish you a happy (as it can be) birthday.
I will think of you this weekend. I am native American and I'll be at a ritual of prayers and meditation at the Cherokee rez.
My wish is for us all to win this fight we have :grouphug:

Be well...

Leggies,
I'm sorry you are hurting so much right now. I too will be thinking of you.
Missy

happy early birthday!!
 

Leggiesmcb--- happy early 21!

I'm in the poconos area of PA and we've had soo much rain lately. I bet you've had it too. Rain rain go away come again another day...remember that nursery rhyme? This weather is so depressing.

Can you have an early birtyday celebration, before surgery? Pick some place special that you wont be able to go to for a while post-op. A nice picnic, visit a museum or zoo, river cruise, isnt there a dave n busters with cool arcade games? How about a make over day--new haircut, manicure, pedicure? I wouldnt worry about your weight. Once you feel better you can tackle that later. Do you have a pet? I am so thankful for my cat and dog. They make me smile and keep me company. I wish you well and will be sending prayers your way :)

hi leggies. i will pray that your second trial scs is successful and that you have a happy birthday. as i read your post i felt everything your feeling and completely understand how hard it is to live each day with rsd along with other health issues. though i have not tried the trial scs (as of yet) i am on a lot of meds to help manage my constant rsd pain and depression. i hope that you know that you are not alone because there are so many awesome people on this forum who make dealing with rsd a little easier and a lot less lonely. sending many soft hugs your way.

Hi leggies. I know how you feel. I contracted RSD at 23, diagnosed a few years later. It doesn't matterr much if things could be worse when you're feeling depressed. Just know that the depression can pass, and it often does. I have had this terrible disease for 20 years, and sometimes the pain is too much to bear, then just when you think you can't make it another day, it subsides a bit.

Know that you aren't alone, we know how you feel. Find something you enjoy to help keep your mind off of the pain, even if it's just for a short time. It's possible to feel better, even if you don't get remission. You just need to find the treatment that works for you. I'll keep a good thought for you.