New member with CRPS and herniated disc
 

Hello everybody, and thank you for this very active forum! I have been reading your posts for some time now and gatherd a lot of useful information.

My life with RSD/CRPS began about two years ago when I fell and dislocated my right shoulder. To be on the "safe" side :rolleyes: I dislocated it twice the same day... The first two weeks went by ok, but when I started the physical therapy the pain got worse and worse. Long story short, it took me 8 months to get an operation (the insurance company didn´t want to pay), the shoulder started to heal and i got full range of motion, but then about a year ago I started to notice odd symtomes like pain from sunshine, pins and needles, the pain became more diffuse... and every type of physical therapy made the pain worse. Acupuncture, TENS, laser, even lymphatherapy made it worse. By that time I understood that I had some kind of disease in my nerves, but it took some months for the doctors to come to the same conclusion :D

After getting my diagnosis I started to desentisize myself, in my own way, and actually went back to work in june, after being away for almost two years. A few weeks later something cracked in my neck, and I was told that I have a herniated disc between the 5. and 6. vertebra on the right side. Not surprisingly my CRPS-pain has gotten worse, and has now spread to both arms and both legs. I am going to see a neurosurgeon on Tuesday and I am pretty nervous... If he/she decides to operate, the CRPS might get worse, but it has gotten worse already. And if s/he does not operate, it might still get worse since I still have symptoms from the disc after almost three months. I know that none of you can say for sure what the doctor should/shouldn´t do, but does anyone here have some word of advice? My CRPS-symptoms are moderate/mild, it doesn´t hurt every second as long as I don´t use my right arm, I am able to carry and lift almost anything if I want to, I have full range of motion... and I want to keep it that way!:wink:

At last, thank all of you that read this long tirade, it feels good to know that somebody understands, well not the disease but the sufferer of it! Have a beautiful saturday!

:circlelove:

hello wreta. i'm glad you found neurotalk. welcome.

this is a copy of your post in the welcome forum.

hey wreta
 

i was injured 5/4/3, i dislocated my shouldr st work. i got in to see the work comp doc 5 days later....told him ihad a history of rsd. he said it looked fine and put my in a sling (i had already been using one i bought at the store). 3 weeks lster he saw me again and asked me to teke off the sling....i couldnt pain in my elbow was insane. 7 months following injury i had shoulder surgery and was put back in a sling, once again felt insane on the pain scale. 5/1 the did an olnar nerve transposition on me. everything got wors, i went to therapy, occupational, physical, and hydro. everything made it worse. sfter s bunch of accupuncture, i finally had a block...suprise, suprise my rsd was back

Howdy!
 

:welcome_sign:

Ouchies!
Well you found the right place to come for support. Everyone here is very understanding, and very knowledgable about RSD. I m glad ya found us, but wish we didnt have all the health problems that go with it lol.

:hug:

Hi Wreta,
Welcome to the group. you have found the right place to be. I am only sorry for the reason you are here. you will find that everyone here is so nice and helpful. Ive said before, just coming to this forum makes me feel better. Only the people here can understand. Once again, welcome.

Sue K.

Hello Wreta,

I'm so sorry that you have RSD, but you have found a wonderful place for information and support.

:Good-Luck:

Best regards,

:cool: EJ

Thank you everybody!
 

It feels very nice to bee welcomed like this! This disease is difficult to talk about, especially since it is so unfamiliar to both to the public and to many doctors too. I am lucky to have met some doctors that have believed in me from the start, this discproblem would have been undetected if my orthopedic surgeon wouldn´t have done the complete workup on me (just like you Desi!). Knowing I have RSD I myself thougt that all these new symptoms were "just" the RSD acting up. Looking back that was kind of stupid I guess :D since even swallowing sent shooting pains down my arm... I guess that isn´t normal?

Wakegirl, did I understand you correctly that your pain got worse from having your arm in the sling? So it is the immobility that triggered the pain more than the shoulderinjury itself? I am curious because most of my RSD-pain is not in the shoulder but from the elbow down to the fingers. This is also why my insurance company don´t want to understand that these symptoms are from my injury. I am so tired of fighting with them...

While on the subject, may I ask you all, is your primary pain located in the same place as your triggering injury, or am I just a freak? :rolleyes: I have my own theory about my own case, but just wondering if this is uncommon or not. I hurt my arm in 2005 when I tried to catch a sheep. I grabbed the sheep by the wool, the sheep pulled away at the same time that my feet slipped on the wet grass and I fell on the ground landing on my elbow. My theory is that I got a lot of small tears from the fingers up, but since the shoulder was badly torn I did not notice the arm. Does that sound plausible? I actually get more pain from typing, writing or eating than from carrying or lifting heavy boxes. I´m odd.

Well, thanks again, I really enjoy being in some small way part of such an awesome, strongwilled and warmhearted group of people like yourselves! :hug: to all of you!

Welcome to the forum. You will find the support sometimes is the one thing that can get you through the dark days. It's like having a cozy hammock that snuggles you close and gently rocks you to peace. Everyone is wonderful.:D

Welcome
 

I had a car accident 2.5 years ago, along with an injury to my hand and arm and a fractured sterum, I had 3 herniated discs mid back:mad:. I left them alone as I was already in enough pain. If they are not pressing on a nerve or causing other problems often times they can be left alone. At this time they do not cause me any pain unless I try to lift heavy items or try to pull weeds. My Rsd had moved from my left hand and shoulder to the right upper back and arm, also my feet. Again welcome,:hug:Carose

Hello and welcome,
Sorry you have the extra worry about the discs. I presume you have had an MRI which will give the neurosurgeon some idea what is pressing on what and whether he will be able to do something to help you.
As carouse said, if there is no cord or nerve compression then often times I believe it is best to leave well alone but if there is some compression then he maybe able to help reduce the pain you don't need to have as well as RSD/CRPS.
My sister had herniated discs between L3-4-5 and was virtually crippled by the intense pain she had, she saw a neurosurgeon who did a disectomy and she has been perfect (back to golf) since.
I realise that her not having RSD has made her recovery much easier, I would hope your neurosurgeon (if you need surgery) will refer you to an anaesthetist who knows about RSD and will know what type of pain relief and anaesthetic you need so as to lessen the chance of a flare.
Heaps of luck
Tayla:hug:

Hi wreta,
welcome! my rsd started with nerve damage in my hip area during surgery, and my primary pain is in my feet where i get the swelling and thus pain galore! so go figure! it is the joy of rsd, to watch it do whatever it wants!!!
Joan

Thank you all!
 

Well, I met my neurosurgeon yesterday and got to see the MRI. The hernia is small, however it is (or was?) pressing on the nerve root(?). The doctor (female) was not really worried about it, since most of the symptoms related to this enjury have gone away, I do get pain if I tilt my head all the way back but that I can avoid, and the pins and needles I can live with. But, oh joy, I get to have my third Enmg in two years :rolleyes: to see if there is something else compressed, she said that this disc can only give me pain in the thumb, not the other fingers. I don´t think they are going to operate, besides, its not like I´m going to get totally healthy anyway, this disc is the least of my problems..

Luckily, almost all of my doctors (neuro- and orthopedic surgeons and painclinicdoctors) are at the same university hospital so they all have the same info about me and can consult eachother. Most people in Finland are sceptical about the state of Finnish healthcare, but I have had excellent care all the way and feel really blessed for that. The taxes here are high, but the one time I had a series of blocks they costed me 6€ each :)

Septmystic, thanks for the welcome, and you are right, even these first few days here have really lightened up my life! :grouphug:

Carose, three discs?? :eek: That must really have hurt in a serious way... We have a saying here that bad things happen in sets of three, but hey, enough is enough! I´m sorry to hear about your... every different pain? But thanks for reassuring me! :hug:

Tayla4me, thanks for telling me about your sister, it was good to hear that her operation was a success, every bit of good/reassuring news is welcome here! Thanks for the good advice also, it is really important to know what oneself does not know and what that or this doctor doesn´t know about this disease, to really get the best care possible, having this ***** disease is problem enough. Thanks for the :hug: also!

JOAN_M, glad and sorry to hear that I´m not alone with this! :hug: I sometimes get a little paranoid about this, since there is no logic in the symptoms, I have wondered many times if I am somehow making these feelings up... I know that I`m not, but isn´t it scary that so many people think that you are? With a herniated disc I have gotten a lot more sympathy than before only because people know what it is...

I have to stop writing now, my arms are hurting, but thanks for caring, I hope that I can return the favor sometime! :grouphug:

Hi Wreta,
I Have A Degeneration Of L4 And L5, And Had Two Facets Blocks In My Back. I Thought It Was The Rsd Spreading Too But Took A Chance And Went To The Back Clinic In Boston And An Mri Showed It Was Not Rsd. The Blocks And Some Simple Exercises Keep My Back Usable And Fairly Painless Now ... But I Too Got More Sympathy And Concern For That Than I Do For Rsd And That Makes No Sense At All To Me. I Think Rsd Is Just Too Darn Hard For People To Wrap Their Mind Around. I Know I Still Do Not Understand It!
Keep Me Informed On How Things Go. I CARE.
Joan

HI and welcome
 

Hi , I just wanted to recommend that the surgeon not only know about RSD and be sympathetic about it.. I had port surgery the post operative pain was beyond imagination- later the surgeon said I really should have put a marcaine pump in you because of your rsd. so please make sure the are adequately prepared and willing to take care of your increased pain due to your RSD. Really dont want to scare you but my pain, post surgery, was shocking.Prior to rsd I went through surgery like it was nothing. take care, cz

CRPS W/ L4-L5 herniated disk
 

Hi everyone. My husband was injured in 2015 had a forklift fall off a Calvert with him in it crushing his right leg. He was diagnosed 1.5 years later with crps. in May they Said he had a herniated disk that was from the accident, they are doing a emg on him but what should I expect? I have been by his side threw it all and the back is what scares me his pain has gotten far worse then i have seen yet he doesn't sleep barely eats, and trying to get workcomp to approve anything is killing him, he hasn't gotten any treatment from april 2017 until April 2018 they wont pay him and he has seen the doctor twice and a mri, they sent him to a spinal specialist and he is ordering all theses test, I'm So scared for him, as its getting hard for him to walk now.
Sorry for the run on I'm not good at writing at all.

Wreta,
If it helps for you to know, I had brain surgery with CRPS, but I had no choice. I would have preferred not to do it, but we don't always get choices.

Like you I have CRPS in all 4 limbs. The only reason mine is not worse is because I take LDN, I constantly exercise and I go to aqua PT. And I rest.

I found out the hard way that this is not a disease that improves becaused you pushed yourself over the edge, just the opposite you really need to rest after activity.

See if you can get him low dose naltrexone.