Newly diagnosed

Hello Michelle,

Sorry to hear about your diagnosis. I too am still dealing with crps and as you already know it's going go be tough. Meds by themselves aren't going to make you better... rehab/physio and things in that wheelhouse are the key from my experience.

That being said. It takes a while to find the correct medication and I've been on so many different ones until just recently I've found a good combination for me.

I started on high doses of morphine/hydromorphone and it made me go to lala land and it didn't take away the pain then we tried a very low dose of a fent patch which did the same.

Since its not a common illness a lot of doctors are learning on the fly and consulting with other doctors as well

I am type 2 and the pain was so bad we had to close all the windows in the house because I was screaming so loud and cussing 24/7.

Eventually we brought in a pain specialist who specialized in cancer and patients who were (forgot the word but weRe going to die). She changed every thing and focused on nerve medications along with Cymbalta, which Is an anti depressant but also can help with pain and that with gabapentin was added to my meds. Also I was changed to some pretty high doses of oxycontin with the plan of finding the right dose and putting me on the long lasting firm when we find the right dose. I have switched to oxyneo (the long lasting form) and changed gabapentin to Lyrica which essentially do the same thing but my body took better to it.

Ideally, if you can stay away from at least high doses of narcotics and stay with the nerve pain meds that would be best.

The best thing for me is I got nerve blocks in my nerve by my spine that freezes the nervr that sends the pain signal from wherever the pain is for you, mine is right hand and foot, with lidocaine. I've done that 3 times now and it's done wonders for me I almost cried. The first one won't do much but the second and third literally instantly made me a human again where I was able to go outside and walk a bit without a walker. I'm still in recovery.

The goal of this nerve blocks is to give you the ability to do lots and lots, and lots of physio/therapy/water therapy etc. That is the stage I'm at and I cannot believe I'm able to do what in doing.

Obviously, I am not a doctor so obviously consult with your doctor but I would find a legit pain specialist and talk about nerve blocks. For the medications, they effect everyone differently so what worked for me might be terrible for you. But the nerve pain killers I believe are essential, at least to me.

Sorry for the rant, but I wanted to share my story aa well as answer your question. I hope this helps. Please excuse typos I'm typing a bit with my bad hand.

Oh dear ,what a bad place you mus in .I feel for you  I am so lucky that although I have chronic pain ,due to,a tibia plateau fracture , it was spotted early  .At three months my OS had it confirmed with a scintigram .As I was aready having physio for the knee ,started 5 days after the accident  the physio's adjusted their regime to very gentle exercises and I was told to STOP if the pain manifested !this was a year ago and have  gradually been taken off oxycontin and oxynorm but I have been doing physio twice a week since Christmas Before this it was daily Y

Sorry was cut of !!! You don't say where your pain is but I find physio in a pool wonderful ,I also have a TENS machine which is not a cure but works for me .Lyrica ,I take 1 small dose in the morning and in the evening .I would push for both physio and do try a TENS ,where I live in France they are loaned on the National health .But they can be bought over the net don't know how good they are as I notice that they all vary .

You might not know but French people are Hypocondriacs with a very big H so fortuntately for me my OP ,GP and physio were very clued up .All advise gentle physio ,especially the physio hospital I was in .All advised that to it was essential to have pain killers as CRPS "feeds on pain"  If you can find a physio with a pool it would do,you wonders and or the sea  .There are gentle exercises you can do and also relaxation techniques .When I was at thehysio centre I saw lots of shoulder injuries  they relaxed my putting an enormous ball on a bench then dangling their arm over it .There was also a machine called a Kinetec that gently moved the shoulder .Of course neither might work for you .Keep happy Marion

Hi Michelle so sorry to hear about the pain that you are in it is a difficult condition to manage and everyday is different for the amount of Pain that you suffer with.

I started out having an accident at work in June 2005 had my leg crushed when scaffolding came down on top of it the doctors at that time said that they might have to amputate my leg as it was so bad but they have managed to save it at a huge cost to me i have begged them to amputate it but only two of three consultants said yes so i have been stuck with the thing it is badly deformed and the skin goes from purple to black.I have had ten operations altogether and the last one was two months ago i have now picked up a Bacterial infection from the hospital and its affecting my Liver more tablets to take for a year and blood tests every month.

My pain is controlled with oxycontin,oxynorm,lansoproloze,gabapentin,amyatriptyline.I got referred to a Nurological consultant they carried out a lot of tests on me and they went ahead and fitted me with a spinal cord stimmulator and this controls the pain receptors and to help stop the pain signals going to the brain this worked for sometime then i had to increase the meds again then they asked me would i be interested in a Baclofen pump done all tests again and i was brought into hospital for the op they had to remove a small section of bone from my spine to fit eveything in i was in a lot of pain after the op but it was well worth it.The baclofen goes straight into your spinal fluid so there is no side affects and the pump fits just under your skin.It was like someone turning the pain off i have reduced all my meds and i am feeling great it must of cost a lot of money to have the two machines put into me but for me it was worth every penny

Hi Michelle

Sorry to hear about your crps and your problems.I am in Liverpool England and i was referred to a Nuro Consultant.He told me about the Baclofen pump were the pump is set to a certain level and the drug goes straight into the Spinal fluid and this does not cause any side affects.Ihave to go every 4 months for a new refill were they take out the old drug and put in a new refill which will last a further 4 months if i go past the 4 months for some reason an alarm will sound from the pump then i need to go into the hospital.If i have any problems or side affects i have a certain phone number to ring and i will be seen right away i do not know were i would be without it but i have no idea how much it all costs the British health service is the Best.I love your joke that you have more leg room its good to have a sense of humour.Good luck with everything Michelle and if you need any other help please contact me 

Hi ,I agree about Dr's, mine has no idea, I am haveing a spinal cord stimulator trial in the next few months, ask your dr for a referal to a pain specialist. Where abouts in australia are you, I am on the central coast NSW, my pain specialist is in Newcastle. This can be done by medicare with a pain specialist, but there is a wait as far as I understand it. I am having mine done under workers compensation. so a bit of a fight each step of the way.

Hi , Sorry to hear that it is not done under medicare, I have a friend in WA that has had one fitted ( under medicare 5 years ago)but hers was from a spinal injury. My PS did not recommed  for lidocaine infusion as I am in the not safe to use category. Keep us posted how well it works for you.

I just found this on medicare, it say they pay up to 80%

http://www.spine-health.com/forum/treatment/spinal-cord-stimulation/typical-questions-and-answers-spinal-cord-stimulation   And there is dr that wil do it a brisbane Pain clinic, I would shop arround if I was you.

Hello, I have been living with this severe pain in my right leg for over 20 years, seen about 20 DRs none have told me what is wrong with me. Now my right thigh has atrophy and have touble walking. My new DR told me to see a Neurologist and ask him abt crps. The neurologist was just like the last ones I have been to. He wants to refer me to someone else. I guess they don't want to make this diagnosis.