Hello All! this is my first post so here I go....

So grateful for this site and find people like myself to talk to. Have been waiting a while but could use some support...

January 2014 I was n a MVA. Originally told all was fine and dandy at the ER just some whiplash. I was having slight pain in the neck but progressively worse pain in my elbow. 2 fingers are numb and very much sensitivity down my dominant arm and hand. I couldn't use the arm. So, 5 weeks later an MRI showed my neck had multiple fractures therefore pinching the nerve (was put in a soft collar- although the dr said at that point it almost had no point). In June I had a cervical discectomy and fusion that was supposed to relieve pain. It did release it but the nerve is permanently damaged. From the moment I woke up in the surgery room I was in agony. Pain increased unbelievably and just got worse, My neurosurgeon recognized that it was most likely CRPS. Had 2 EMG's both showed negative. Anyways, I went through 2 steroid injections, 2 stellate gaglion nerve blocks, a 1 lead stimulator trial none of which proved any relief. I was doubled checked to see If any bone chips were left after surgery laying on the nerve but came up negative.


This disease is crazy to me. It exacerbated or created almost every health problem I have. It is unreal.


Prior to the accident I had heart problems but like I said the MVA did more damage. I have inappropriate sinus tachycardia along with orthostatic hypotension. Meaning, my heart rate flies when I stand and my BP drops. My BP is low to begin with, so each day I pass out, many multiple times a day. Alongside that I get seizures. When walking down the hall if I go down the stairs in the house (there are 2 decent sized windows) I will immediately pass out from the bright light. I wear sunglasses day and night- down to the shower or writing this now. Lights off, in my bed. The concern is if I hit my arm with the RSD I immediately pass out as well. if I lightly bump my elbow against anything i'm out cold from 1 minute to 15 minutes. Then, I wake up I cant move at all. My mother has quit her job because i'm a flight risk 24/7. She will run to crush up my morphine and I keep taking it while I lay still. I am unable to move my body for hours/a day at a time. It is extremely sensitive to the cold many of you know, so I always have 2 big fuzzy socks on it and these certain sleeves

(all must be loose) at all times with a blanket and jacket draped over again very loose. Always have a heater in the shower next to my arm. I do have to say I am incredibly blessed my L UE can handle some touch of the blankets .As many do, I have to be careful or the blankets will get too heavy easily. I have one of those sort of [life alert buttons] that calls people and texts them my location when I punch it (used some ribbon-makes a very stylish necklace I must say...LOL). My electrophysiologist has switched so many meds and doses to find try creating a perfect concoction for me but no such luck, We have only achieved med combo that give me a few seconds to lay on the floor( I can tell the syncope is coming). She has sent me to so many specialists for opinions but nothing. RSD totally blew these issues up.


Also due to the narcotics I take for pain I get awful dry mouth and dry eyes. My pupils are 2x as big as normal eyes, dry 2x as fast, and don't make tears. I take Restasis and 2 other sets of eye drops a day. The dry eyes bad headaches and as I mentioned, sun sensitivity This is hard because it ties also to my connective tissue disease (swelling causing no tear production). The tissues in my body swell creating - !. loose tissue damaging rolled ankle with over 2x expected healing time already{from October} connective tissue is a lovely addition to Nonspecific Autoimmune disorder I won. My Rheumatologist sent me to an endocrinologist in regards to adrenal insufficiency. My drs. are looking for a root disease tieing many problems together but so such luck yet. I am "medical mystery"; Id be willing to bet some of you on here have gotten that from your dr.'s too.


Relearning to write with my opposite hand has been a huge help. Again, I took a fall and from the strain of only using one hand I developed carpal tunnel. Got a Kenalog injection for it, and was allergic. Went to PT, each week was worse It would swell, go numb, and hurt so bad I couldn't take care of myself so i had to stop. They wanted to do surgery but with the risk of RSD spreading cant make it an option.


I also suffer from depression. I take megs doses of multiple antidepressants which help but I have found it hard to watch the world go by while I am unable to work and be in school for over a year now. I am not even able to wash my hair without the help of my mother. At 20 years old I am praying this isn't the "prime of my life". I take 72 pills a day. I am very blessed to live in Philly with many good doctors because I get almost all side effects of all medication, so I am sick a lot of the time. I have motion sickness pretty intensely so I cant travel far to see dr.s so being in philly is great. I do see doctors at least 2x each week ip to everyday as most of you may do too. My narcotics knock me out and I am unable to exercise with my asthma and a fall/syncope. On the slow road to recovery from 2 swollen, bruised ankles. I am so thankful for the people who love me and support me which gets me through the days but as you ALL know. its difficult for us out here just living day to day.I would love any stories/feedback you are willing to give if you read my "complaining fest" I apologize to gripe at you all.. Thanks fpr your time


Leggies


One question for some of you all- after I undergo this 2nd stimulator trial and IF I get bad results again, does anyone have feedback from the ketamine treatment? all I am aware of is I think it isn't approved by insurance. My pain management said he wouldn't recommend it, and I herd from one person who had it that it was awful side effects but still curious.is it a week straight or just like 5 hrs a day for the week? Any input I will take! thanks!

Welcome Leggies,

I am so sorry to hear of everything you are going through and at such a young age. It is just terrible what has happened to you. You will find support and companionship here. You are not alone.

I always recommend Dr. Pradeep Chopra's video "CRPS Diagnosis and Management". It is on YouTube or will come up if you Google it. He gives a two hour talk, loads of info on treatments, supplements, therapies. He is very knowledgable and non-doomsday.

I am currently receiving ketamine. My doctor uses a very different protocol from the four hour infusions over five days. He uses a sub-Anasthesia dose of 1mg per kg. We started at half that to make sure I tolerate it well. right now I am at a dose of 0.75mg per kg. It is done in the office and takes about 1-1.5 hours. My doc often starts people at two times per week then weans down. I am going less often because my case is not as severe as some and I am little and sensitive to meds.

I have been posting my experience. I just posted this week after dose three under "Getting Ketamine Infusions". I have not felt any distress during infusions and not had any side effects other than being sleepy the same day and taking a beautiful nap. I do feel it is helping. Though it is not super-dramatic, perhaps due to the low dose, I am getting improvement.

Are you getting any support for your depression? It is very difficult going through this and coping with the loss. I found going to see a therapist who specialized in chronic pain and traumatic life change to be an immense help to me. I found her on the Psychology Today website by looking at her special interests. She helped me move through much of my despair and helped me with coping skills to handle the pain better. We used some non-talk therapy techniques including hypnosis and EMDR. Alleviating anxiety and sadness does help with pain. There are therapists who work online of going to an appointment regularly is a burden.

I will try to post some links for you later today. I read an interesting article on Ketamine used with a patient of 6years duration treated with three infusions in Houston. They had good results. It was a low dose like I get. Obviously results vary with all treatments and this was a single study so can't be extrapolated but still hopeful and interesting.

I hope you find relief soon! Sending Healing Love,

Hi and welcome and I'm sorry to welcome to here vs a recent lottery winner site or something

I really want to know how you learned to write with your other hand? I have Crps in my dominant hand and am trying to use my left for lots but I am so right handed! Lol

Jenijojo

Thanks for taking time to read and welcome me. Lots and lots of practice. Believe me it was illegible for quite some time....still is sometimes!! You can totally do it. I just wrote randomly and trained myself like kindergarten all over again! Haha good luck!

Thank you again!

Leggies

Littlepaw

You are a God send! Iam most certainly going to check the video out! To hear these positive reviews from articles and videos helps alot.

Now, with the infusions-how many weeks do you anticipate going? And did you pay all out of pocket? I presume if you were on the stronger dose there would be fewer visits involved. I am so glad to hear you are not getting bad side effects.you said you can be sensitive to meds? I am as well so it is goid to hear. That is a huge win for you!

You are right with the counceling idea. I have been but not much sonce Tg he accident with all going on. I had not even thought of online councilng.I'm really impressed with the hypnosis results (and other non "msinstream" treatment ideas. Very interested in any links/posts you put up from experiences.I pray you will continue to have minimal side effects and the treatment with provideas relief.

Just from reading some threads on this site I want to tell you just how encouraging you are. Responding to as many people as possible with new ideas/links etc. Having you in this support system Is a huge asset and I want to thank you for that.

Best wishes and will keep in touch,

Leggies xoxo

Thanks Leggies! I enjoy giving support. It is meaningful and rewarding, so I get a lot out of it too!

I have had a challenging journey with injury, surgery, nerve injury from surgery, more surgery to fix that UGh! Then one more surgery for good measure. My poor foot! It goes on and on. 9 months crutches out of 18. So fun. There was a lot of crying, but I basically refused to give up and started making progress after much trial and error. I worked in healthcare for a long time and just naturally research the heck out of stuff. I have encountered a lot of info that while it does not apply to me necessarily, it does apply to someone else so I am often throwing things out there. I appreciate your kind words.

So Good Gosh, for some reason I am crummy at posting links. Here is the video of Dr. Chopra which you probably found already...

http://www.youtube.com/watch?v=s3LKhOZ8mAM

Here is the article on ketamine...interesting to me as it was an atypical protocol.
http://rsds.org/wp-content/uploads/2...Edmondsmon.pdf

The cost on my ketamine is pretty reasonable. It is $300 per infusion. I don't know how this is working with my insurance as I have not met my deductible. But since the cost is applying to my deductible I guess they approved it.
The plan is four sessions then a follow up visit to decide about continuing for another four sessions. After that is quarterly or so boosters as needed. I think I am having benefit so would like to continue since they aren't bothering me.

I am glad you are here. It is so important to have support with what you are going through. Definitely look at the online options or therapists who do home visits. There are some out there. I was really bogged down with sadness and anxiety. Getting help with that made the physical burdens easier to deal with. Who deals well with anything when totally stressed out?

Kudos on the re-training. That is awesome and amazing. Hang in there and don't give up on the potential for healing. They are making strides in research as far as auto-immune factors and other causes. hopefully that will lead to new treatments. Are you able to do any kind of exercise or pool therapy? Many of us are addicted to the pool as a pleasant, relaxing place to let the body be free for a change. Helps with some of the weird aches from compensating too...

I hope you rest well tonight,

You're absolutely right, she is a huge help to many of us here. Reading that made me smile, because I've thought the same thing.