Hard to stay in the fight
 

Background: Had an injection for treatment of migraine when I was 24 and the shot hit a nerve which caused the CRPS to start in right hip. It has been 3.5 yrs that I have been fighting CRPS and my case spread to both legs from hip to toes.
I feel like I'm losing this battle and I must admit in my opinion I gave it a good fight.. Was a tom boy growing up and extremely athletic until the nightmare started. I used avoidance and denial for a long time, as I finished my MBA in record time and got my dream job at one of the top 100 public accounting firms in the US. I loved my work but came with long hours and a lot of stress (My specialty was auditing local governments and trust me that job comes with a world of issues to ensure there are no material misstatements....)
As my CRPS worsened I had to go in for numerous treatments (intensive pain programs, nerve blocks, radio frequency injection, and ketamine infusions.) Each treatment came with their empty promises as they provided little results but each treatment took time away from work... Let’s just say once the company I worked for found out my disease was not curable, my career ended 2 months later which was last June.
Having a difficult walking (even with my intensive medication routine) and I don’t see how I will be able to live that I worked so hard for while fighting this unpredictable, un-relentless, piece of s*** disease. I fought so hard and am disappointed that it all was for nothing. =( I guess I feel defeated this time and was wondering how do I pick myself back up this time??????

Oh dear, Swatgen..allow me..
 

Iam so sorry for your sad heart... This is a relentless, thankless battle... We have all been in the trench of "whats the use" before..I think it is so normal and common for us to feel that way.. My most heartfelt apologies to you at this time..My thoughts are.. well, no regrets..you have tried and given your all...Not changing one option of how your handled yourself in your treatments.....our livelyhoods are our glue. I find that others who are still healthy and working just can't feel the depth of our pain.... The pain of loss of our purpose.. I, too had to leave my work as a research scientist after 25 years service, plus I was a tennis instructor for many years..sports was my gig! I loved what I did only to surrender to RSD.. beginning in my rt. knee/leg now whole body in just 3 years.. But can I give you a warm tip?? One day you can re-pay me when I am where you are today...(trust me it will happen)... Find the love in your heart... Let go of what we can not control..We still have others who love us for who we are today..Listen the the birds chirp outside, share a smile with a stranger, it will come back to you... take a refreshing nap in the warm sunshine..allow yourself to feel good once you validate the sad heart feelings.. try not to place stress on yourself for what has happened or what we can not control...life is still wonderful, we just have to clear away the merk and weeds so we can see and feel it..

Hugz for you so that your day will be brighter... You have done really good and you will continue to once today passes...

Kathy:grouphug:

I sent you a PM - but no one says it better than Kathy. She is just wonderful at this!! It takes a village...

Please never, ever give up. And in the meantime, please give yourself a break. Relax. That in itself may give you a surprising amount of pain relief and a chance to start healing.

We all care. Keep in touch. XOXOX Sandy

Dear Sandy..
 

You are adorable, Thank you!

Hugz, Kathy:hug:

First Swatgen

I am sorry for your pain. I don't know what to tell you other than keep fighting. I don't have RSD, but my little girls does. And I don't know what I would do if she ever felt the way that you do right now. All I can say is that you have people that LOVE you and care for you and I am sure as I do CRY for you. I want you to hope and pray and know that there is always a light at the end of this tunnel...It may not seem that way, but there is. My heart breaks for you right now. I am praying for you and you should talk to someone to help you though this.

Keep posting here. You can always send us your number and we will call.

Keep your chin up my friend and I will be praying for you.

Love Sandy

One of the hardest things for my was to accept my new RSD life.A life of limitations-Sucks. I too lost my occupation,dream retirement etc etc. But over the years, it has gotten easier-not that I like it- but I have no choice but to do this and accept my limitations and learn to do new things that I never thought I would enjoy.I am fortunate that I have the most loving and supportative husband and family. I have become an active advocate for RSD-started a Support Group, raised funds thru Ky Derby Mini Marathon. I will NEVER give up searching and praying for a cure and awareness of the public and ignorant Medical Profession that we RSDers have to deal with. Thanks for letting me vent too- Fondly- Carol

Hi, I totally understand what you are going through right now. I had to give up my career of 30 years when this monster hit me. You do have one great advantage right now and that is your education. While you may not be able to work the long hours required in a big firm, you may have other options available to you that you have not yet thought about. But right now, you may just need to give yourself time to grieve and to grow used to this new you. One thing that I found to be helpful to me was that I now have time to attend church and become involved with some of the activities there. When you are working long hours, and weekends you tend to not take the time to care for your spirit in the way a church family can care for you. I would also think that perhaps your abilities could be of use in many ways that could accommodate your disability now. Perhaps teaching, volunteering at your library or senior center. I do hope that you have looked into SSDI as this can be a very long process, but if you do qualify you will be eligable for Medicare. To know that I did have insurance was of great relief to me. Of course I do agree that nobody says it better than Kathy. I really hope to hear more from you soon. Blessings, Lisa

Hang in there
 

Dear Swat,

"Hard to stay in the fight." Hmmm....you may have lost the battle but not the war!! You see in this war of rsd and throughout it we have to go back to the barricks (sp) and reexamine our strategy, maybe things have changed, maybe we need some new equipment, maybe a rest, maybe a new plan. You have to build a toolbox of things that work for you. I call it my strongbox, it is built with amunition to fight the enemy (rsd), in it is my faith, my family, relaxation tapes, yoga, TENS unit, heating pad, medication, many other things and then of course, last but not least my heart and soul (rsd will never win that) PERIOD. These are all things that I use to fight my battles, some I win, some I lose, but I have no intention of losing the war. From the heart, I tell you...you will lose some things, mourn them and then let them go and then begin to fill your own toolbox with things that support YOU and the disease. Like this forum and the wonderful group of people, (family) who truly care, understand and support each other through good and bad. When I am going through a bad flare or maybe just a bad day I always look to learn something new from that experience and I do. For today rest, rethink your strategy, and then give it hell!!! You got this... if not we will help you fight the fight until you regain your strength. God Bless You!

Jeanie

Dear Swatgen27, YES, you can pick yourself up, just know it takes time. You are dealing with not just a painful disorder, but a huge LOSS. Loss of our health, loss of your job, loss of your dreams, your financial stability, all these things are huge. It's grief we feel-we go thru the stages of grief. The support and compassion here on neurotalk is something, if you continue to reach out to us, we would cherish the opportunity to be 'here' for you. The emotional pain is something I believe we can't do by ourself.
When I was diagnosed with 'full body' or generalized RSD 6 years ago, my neuro suggested I see a psychiatrist to help me thru it. He gave me two names. I didn't like them, so found one myself. He not only is a psychiatrist, but a neurologist, pharmacologist, internist, board certified is all areas, but just opened a clinic with HBOT. Went to Cornell, NYC, Mt Sinai, 25 years of practice in NY, Talk Radio too, and served in Viet Nam as head of severe burn patients. He lost his wife to cancer and daugter-age 23 to carbon monoxide poisoning while visiting an aunt in Florida, who had just moved into her new home and turned the heat on for the first time. No one woke up. He has seen pain, and felt pain, and has helped save my life in an emotional sense and I found him in the yellow pages. I don't think that was an accident.
I also spent 2 1/2 years of counseling when my parents died when I was 25-cancer and heart. I cared for both. The grief counseling prepared me for my RSD following surgery 15 years ago when I was 47. Our daughter was 15-we played tennis every day, water skied, snow skied. Our family of 3 traveled
to many countries in Europe, Mexico, Hawaii every year, I loved loved our family business of building residential and commercial developments. Then we moved to Arizona for our daughter to finish college-court reporter-. We bought a coffee business and I loved it too, tripled the business-but now haven't been able to work the business for years. When the economy tanked so did much of our business. I want so bad to get out there and get new accounts, and am going to try this winter. Summer of 110 degrees doesn't like RSD. It's been 107 up until this week!!!
Maybe not now, but can you see yourself possibly having your own business out of your home. You have such a wonderful education, and if you had leaway of your own hours, could that be possible? I can't drive for 4 hours after taking meds, so I have a window of time in the afternoon I can go out to solicit new accounts. We have run our own business for over 40 years. Love the freedom it offers, and now it is only possible to work a limited time, and can work around flares etc.
I attribute my present mobility to physical therapy, massage therapy, and swimming. Water needs to be 86 degrees according to RSDSA. My toes were curling up and my Dr. said to get in the pool everyday and squeeze them while swimming. After 4 months, they were touching the ground again.
I have one hand that is like a claw, frozen partially. I didn't get diagnosed for 4 years and had delay in therapy for the hand. The therapy is torture, but am so glad I went thru it. Also desensitization is so important-I don't have any sensitivity to clothing, sheets etc. I did the desensitization in therapy and also at home dailey. If you have this issue, I'll share what helped me.
Today, my new digital camera just arrived. I'm going to take a class on how to work it and make photography my new hobby. (I'd rather play tennis)
but it's plan 'B' !
Please know we care, I cried when I read your letter and Kathy's response.
RSDSA is a national organization. If you put in your zip code, it will give you the nearest support group.
Even though I have full body and internal RSD, being on the right meds has put me in a better place. My Dr. is conservative, and has used a combination of meds to deal with neuro pain. I'm on Vicodin-4 a day. used to be 6 a day. 4 lorazepam-used to be on 8. This anti-anxiety med has helped me use less vicodin. 2 blood pressure meds, sleep med is seroquel xr 150 mg. sleep 10 hrs. straight. Ambien cr quit working. He was doing a 200 person trial study of seroquel and put me in the trial-they found some people it worked well for sleeping. Cymbalta 120 mg for anti-depressant, which works on nerve pain as well. Everyone is different when it comes to meds. I used to have electric jerks, shocks, full body, lift my head right off the pillow from a sound sleep. The seizure were terrible 24/7. I was on 3200 mg of neurotin, but didn't have any symptoms of the shocks. Eventually, went off slowly and rarely have any symptoms. I'm now working on taking the weight off that neurotin and lack of exercise put on. I'm working with 1 lb. weights and doing upper and lower body exercise. This winter going to start walking dailey.
Like Kathy said, we have all been in that 'dark' place of facing this disorder, and miss our former lives. Like Kathy, I will give you my phone number if at anytime you would like to talk. Also, if you look at the upper right hand corner where your name is, you may receive Private Message. To send private message, you push on upper right corner and then look at left hand side to where it says send private message.
Please know we care and understand. One of your new friends, loretta with big warm hugs :grouphug:

Impressed as newbee
 

Wow, I am new to this forum. RSD since 1989 and getting worse with idiot HOA injury. I am fortunate as I have never had any broken bones but RSD is kickin my you know what! Was only in right knee and with this incident in March 2010 life is getting tougher. I have been reading these threads and have learned a few new blessings to try. THANKS Y'all. Question is how do I get a list of professionals in my area that can be more helpful with a specialty in RSD please? I live in Wears Valley, an area near Pigeon Forge/Sevierville, TN. I will willing to travel if necessary to get the right Dr. etc. that can be helpful. Currently I have a pain mgmt Dr., PT, primary care Dr., one time visit and going for 2nd acupuncture Monday via DR and to Neurologist who is familiar with RSD in Knoxville on Sept 27. Any suggestions? Y'all are a wonderful group! Thank y'all in advance .....newbee Kathy T.

Hi Swatgen,

I understand the dark days that RSD can bring, but please.....never, never give up that things can get better.

It might not be the live you planned on, but if you can find the right docs to support you, you can have a worthwhile life.

Are you still able to work at a lower stree accounting job ?

Thank you everyone for your warm thoughts and advice as I really took the responses to heart. The advice and warm thoughts have helped me decide that I will be taking at least a 2-3 month off from work with the goal of sorting some of this out...
I went through numerous invasive procedures and the normal treatments for CRPS. Not one treatment provided the long relief so they were discontinued but the Dr’s always provided the next course of action. So I was referred to Dr Lubenow, which is the top specialist in the State of Illinois. He gave me two options and at this point in time I will only do non-invasive treatments so I choose Ketamine (I have been there and done the invasive procedures and each time the procedures caused more pain with no lasting effect).
After 3 outpatient treatments the Dr said he wanted me to check into the hospital and participate in the invasive treatment (which was a nerve block but instead of a traditional approach. The traditional being an injection procedure vs. having them put a catheter in the spine for two weeks.
And to the part that made me quite treatments:
I respectfully reminded the Dr that I refuse to do anymore invasive treatments and he was not happy that I would not consider what he said is needed... I said well if I don’t do this treatment what other options do I have and he said none and that if I don’t do what he say then I’m a dead girl walking and that I will die within the next3-5 years. I left after that part and never looked back...However what he said still haunts me every day.
And lastly, every day for the last 3.5 years I have fought so hard but at this point I have tried everything I know and it is not success that I’m feeling. In every aspect of my life this disease has taken a toll and that is the part I fought so hard against. I may have had this disease for 3.5 years but I grew up in a household with two amazing parents in which my parents happen to be blind and in one case deaf as well. My parents don’t let their disability stop them and they work so hard not to let it define them and that is why they are my role models but see how I feel today is even a failure as to what I wanted to do to prove to my parents that I’m strong like them.
I’m sorry to bring this negativity to the group as I don’t want to bring down others. After reading the great advice and heart to heart responses that were given, I have decided that I’m going to plan to get away for a while with my Hubby because the one thing I definitely know is I need a vacation.

Your welcome-we are here for you! A vacation sounds wonderful-time to relax, plan your strategy, recharge. Time with your hubby with some good times.
It's wonderful your parents have a full life with blindness and deafness. But please please don't consider yourself a failure in comparison with them. Were they born with these conditions? Regardless, we can't compare those conditions to the pain and losses of RSD. We can't underestimate the physical and emotional pain of RSD. The well-known McGill Pain Index rates RSD near the top-I believe above amputation and near cancer as to pain levels. You can find that under RSDSA-our national organization.
What your Dr. said and did is inexcusable!!!!! As a professional-to say that to you to intimadate you to follow his plan =well, I would personally report it to the Board of the hospital, as well as the state board. It was emotion and verbal abuse to use his 'power' as a Dr. to intimadate you this way. The fact that it 'haunts' you everyday is proof> I am so very sorry this happened to you.
RSD patients live long lives, although not without pain. It's true RSD, as an autonomic condition affects our immune system, but we can counter that with healthy eating and various ways of boosting our immune system.
When I was diagnosed with full body RSD-generalized in my 9th year-6 years ago, my neuro suggested a psychiatrist. I found one that actually is my pain management Dr. He is also a neurologist, and pharmacologist, board certified, as well as other degrees. I can't tell you how much this has helped me. I had 2 1/2 years of 'grief' counseling when my paraents passed away, which also helped.
Most of us here have had physical therapy, to keep mobile, and densensitized the body from the 'touch' pain many have. I don't have the touch pain anymore because of it. I also have had unbelievable number of massage therapy, that has kept me mobile and desensitized. Swimming has also been wonderful for my mobility-water 86 degrees.
Swatgen27, please have a wonderful time and please keep in touch-we care. One of your new friends, loretta with big hugs:grouphug: