Hello everyone. First let me say thank you so much for this site and for everyone who has shared here. I have learned so much here from your posts.

I have lived with extreme pain for 6 months and have finally been dx with RSD. I had a complete ligament tear in my r ankle along with 2 additional ligaments with almost complete tears. Instead of doing surgery my 1st podiatrist put me in a cast. The nurse moved the cast before it had set which caused it to bend backwards and cut off circulation. I was in more pain then when everything tore. Long story short after 5 months of trying to get out of the boot I finally was sent to a surgeon who said I needed ligament reconstruction surgery and that surgery should have been done from the get go. He did a set of xrays to confirm something he saw on the mri. After seeing severe bone loss along with my other symptoms, he said he felt I had RSD and that treating that took priority over the surgery and sent me to a pain dr.

While waiting for next appt I started reading everything I could about RSD and am angry. Angry at the first dr, angry that I have had the symptons since they took the first cast off 3 weeks into this and noone caught it. And angry because of this awful disease and what it has done to all of you and of what I see as my future. And very very sad.

I have fought very hard to try to walk thru the pain, went to work everyday fighting back the tears. Had some hope for a minute when I thought I was finally going to get surgery and get past this. Now he wont do the surgery until when/if I go into remission. The job is looking bleak as they have figured out that something serious is going on and am in fear that I will be fired anyday now.

I had my first LSB yesterday and for the first time I have some pain relief. The burning is gone and the bone crushing pain is more manegable. The color is still not right but better. And the swelling was better until this afternoon, but I walked on it alot today as I dont know how long this is gonna last so tried to use it as much as I could. So I am trying to be hopeful, but unfortunately, it think it has spread to my hands and have noticed spasms in my face below my eye. My next appt is next week to see whats next.

I have been lurking for weeks so finally got up the courage to post. So sorry that I am not more positive right now but I am scared, live alone, support myself, and have no family to speak of. I do have some good friends who have helped me thru so far, but am afraid of leaning to much and pushing them away.

Thanks for being here.
Brenda

Were you hurt at work? If so, please try to get yourself a really good WC attorney to help you with the related benefits ASAP. It's really important to get some of that paperwork filed in a timely manner.

I'm so so sorry for how you feel you are perceived at your job. So many of us have been through the same. I have just returned after a one year LOA due to my RSD, I was a real mess when I left. But the entire time I was out I spent trying to get better so that I could go back to work. It's not easy managing a chronic illness and a job - especially when in the early stages of it when everything is new and you don't know what's going to happen next. I made it for a year after I was diagnosed, and then I took a year off.

Try to find the very best doc that you can to treat your RSD. Once I started feeling that the RSD had spread, I moved from blocks to lidocaine infusions, because they treated the whole body. And then I moved on to ketamine infusions. Ketamine has worked well for me. But it took me a LONG time to get it.

The best of luck to you. XOXOX Sandy

Brenda,

It is very nice to meet you..I am so sorry for all of your tribulations with this mean beast otherwise known as RSD!! I am glad you made it to us... We have support, such a great group of wonderful people who I gladly call family..We need eachother as with RSD and anyother illness, that is serious in nature..living with it is much different than watching it happen to someone else. RSD delivers a big bag of many tricks..first is the dxs then comes the even harder part, that is acceptance..that is a huge hurtle... That is where we all come in the help you... Anger and denial is very common..we really need to take the bull by the horns..It is crushing and heartwrenching..Allow yourself the time to be accustomed to our disease..Educate yourself but above all..be honest to yourself and honor your new set of limitations..Work is not always possible further intio this condition..That time is well spent with your energy transformed into RSD education, treatment and advocate for your best possible care..I know this is a nightmare... but finally after finding your comfort zone with a trully good RSD knowledgeable Dr...step back and love yourself..your new self..As RSD is only part of our new found self..We still have so much to offer..you have nice friends who love you and want you to do well... so days will be touch and go..good and bad but remember..life is still a gift and RSD can only consume us as much as we allow it to... Continue to move forward..hook up with your Dr. and continue the blocks, medicine for pain, warm water pT, stimulators..treatments offered and please, find someone to talk to..the are worth their weight in gold..

I will pray for you..in hope you can continue to have some pain relief with your blocks..just never give up .. always open your heart and mind to fight this disease... we remain strong even after a dip in our road but the journey is well worth your travel!!! AND you have us!!!

Hugz,

Kathy

Hello and Welcome. Just want to let you know that we are all here for you. Yes does sound like lawsuit heaven ,but only you can determine that route. In the meantime get all of the help that you can and do not be afraid to lean on your friends -that is what they are in your life for! People really do like to help others. Stay strong-you are in my prayers-Fondly-Carol

Brenda,

I have had it for 11 years now, but I think you have it worse, and you have my sympathy.

I have found that there are very few doctors who know anything about RSD, so just try to keep your cool through the struggle--and keep struggling. I think you will find the Internet will give you wisdom in this, and you'll end up smarter than the most of doctors. If I am smiling, it is because I have RSD, but RSD does not have me!

Best regards and wishes for relief--
Larry

Hi Brenda,

So sorry for your loss. I would absolutely go along with your current surgeon who won't do surgery till remission as proceeding with another may likely worsen your RSD many fold. I believe there is an article on this site somewhere about how to approach additional surgery when you have been diagnosed with RSD. I know I have it somewhere too.

Secondly, if you got some relief with a sympathetic block, that is a somewhat good sign and if your docs are encouraging more blocks, do them! I started blocks 6 weeks after the inciting surgery and it's the only thing that has significantly decreased my pain. Everyone has different results though. BTW, I was also told by several surgeons that I needed more surgery but none would be brave enough (including me) to risk it until a clean period of remission amounting to 6 months transpired. Can't go 6 hours without symptoms so I'm still waiting at 3 years post!

shapeshifter224, I'm very sorry about your dx. I agree with Dubious in that your doc seems to have some grasp of RSD do to the fact he wants to put off the surgery until things brighten a bit. As stated there are ways to head off a possible spread of RSD when performing surgery, but it's not etched in stone. Just a hunch..... ask your doctor if he thinks there maybe nerve entrapment.

thank you so much for your support and info.

I had 3 days of relief from the block. For the first time in 6 months I walked with just a brace and no cane - no boot no crutch no wheelchair. But unfortuately today the pain is back.

I feel like I am on an emotional rollar coaster. When the pain came back it was a reality check that yep, this IS RSD so I am foced to face that now.

Before I just wanted to believe that if I just had the surgery that my life would return to normal. But it is becoming clear to me that I need to be patient. Thank you for sharing as it has helped me to start to accept this for what it is.

As far as lawsuit, I will probably check with a lawyer in the future. I am going to give it a minute to see how things play out. And to answer the ? about WC, nope it wasnt at work.

So I guess the dr will tell me tuesday that I need more blocks. I will do sedation next time cause it hurt to bad without it. I will just need to find a ride this time.

I am very sad right now and the pain almost feels worse, perhaps because I have not had it for 3 days and I was so used to it. But seeing the tv 911 shows today, I should be grateful I am alive.

Big hug to everyone.
Brenda

Hi Brenda, it's truly understandable-your saddness. It's such a huge loss-to loose our health, ability to work full time, sports, if we were into that-I was dailey. And that takes time-like you said I should be grateful to be alive-we are grateful to be alive, but it takes time to accept our current state of health.
I've used a lot of things for distraction of the physical pain. I enjoy sports on tv, swimming, I did a huge amount of physical therapy and massage therapy to keep mobile. Mine started with frozen shoulder following surgery. absolutely no use of my left shoulder - arm. I got nearly all of it back because of early treatment, although I wasn't diagnosed for 4 years. When I had a nerve injury in left hand-misdiagnosed and late treatment. My fingers are frozen like a claw-but with treatment can now cut my food, type etc. I'm so grateful I left that Dr. that said I had Rheumatoid Arthritis and flew a couple of states away to sports injury well know group-1 minute diagnosis. Ordered a Tens Unit and have full mobility except left hand. Swimming helped me a lot. When my toes curled up off the ground, my Dr. had me do warm water swimming therapy, squeezing toes as swam. After 4 months, they touch the grounp. Be your own advocate- please stay with us a you will learn so much and hopefull save your mobility. Emotionally, mentally I am grateful for the support here.
Most of us have had horrible sensitivity-to clothes, sheets, wind-but I had desensitization had hand therapy, and did it myself at home. Took several plastic containers, put sand, coffee grounds, cotton balls, various textures of fabric, beans, popcorn, and run hands, feet thru the containers. Eventually I have no sensitivity to limbs.
You can go to RSDSA and put in your zip code and get the closest RSD support group with phone number of group leader. We have many professionals visit our group and give us a lot of insight.
I use distraction with Biofeedback, Visualization, Journaling, Writing to friends, Talking to friends, We have friends visit us here in Arizona from Oregon-Washington where we used to live. They understand our limitations, but so enjoy visiting and soaking in the sun after a winter of rain and snow.
The massage therapy is something I believe gave me mobility, except left hand. Physical therapy too. I wasn't able to tolerate accupuncture.
It's been 15 years-6 years of which has been full body and internal. I try to be positive and grateful-But it has taken time to feel this way. Used to be in a dark hole. I found a wonderful psychiatrist, seeing him 6 yearsnow, who also is my pain management Dr-very conserative, He is a neuro, pharamacologist, board certified and also an internist and now built two clinics with HOBT and other procedures. He left a long practice in NYC and am so grateful I know have those dark times. You WILL come to terms with this and find joy in your life-it maybe a different joy. I still miss tennis and water skiing, snow skiing, but I just bought a wonderful camera for my new hobby of photography. Going to take class. I've thought of taking up painting, but will keep with the photography for right now. I'm planning on 2-3 trips next summer and get out of this heat in Arizona.
Please know we are here for you.It does take time to adjust- I had also been in grief counseling when my parents died. That helped with this health issue too. 2 1/2 years.
There is so much comfort here and caring. Wonderful group-take care, one of your new friends, loretta