Hello from New Zealand!

[Andreas]

Like others here until I found this site I never knew what I had, just that others had likewise cases.I had mine fade away after I was 13 only to come back badly when I was 19.I have poor knee design so had one operation which of cause didn't fix anything.I used normal pain killers until I broke out in Hives (That was fun, couldn't get my pant's on!).Then my GP/Doctor got me to the Pain Clinic at the Hospital .I've tried pyiso, tens machine and lots of medications with some long term damage now done.I take a total of 13 meds 4 times a day with some of it every 2 hours , of couse this has done bad stuff to my bowels as those of you will I bet know.I am on very powerful pain medications which I hate having but It takes the edge off which is why we do it eh?. I had fair results with thaliaomide (Spelling), that drug that did all the bad birth defect damage in the 60/70's, they are using that for leperosy nerve damage in some poorer countries now and it worked for me but did some bad stuff too.However I am returning to it ,have too.
I have sleep apnoea too, and are on a CPAP machine at night which has helped sleeping at last too. My Pain Clinic Doctor is a very clued up Doctor who has given me great help, never pushing me or my wife and even invited me and my family to give a talk at the hospital to med students (Daunting!) Years of telling different Doctors of an itch you couldn't reach, tooth ache in the knees etc, when I read the same comments here I was rapt to know I had found others.My Doctor found another in our north island who had likewise people affected. I had knee,groin and spinal injections to try to block the signal from my legs too .It is now in my elbows as well from time to time.
I have a lot to read here and hope to learn more from everyone, hope I didn't bore you all to much! I am not working now but my 10 year old son and my wife are a great help.The pain clinic asign you a Clinical Psychologist too which has helped at times.
Karl,
Newbie,
New Zealand.

[becat]

Hi Karl,
Hello and welcome from Texas.......Glad you have found us, so sorry that you had the need.
WOW, I can understand some of the thing you spoke able so easily. The tooth ache in your knee. I didn't really believe that I could be suffering from growing pains in my 30's.....The itch you can't reach......yup, I can reach mine though and at times have injured myself trying to make it go away.
thaliaomide ( I used your spelling) is just become an issue for me. My mother told me just recently that she may had taken this when she was pregnant with me. She tried for years to get proof of that tracking down records, only to fine that they had been destoyed some years ago. I'm nosy, so I'll just ask.......Are you currently taking it and may I ask why? I find it interesting that it's still in use for anything. Just curious.....
You know, I think we all look at the medications that are offered to us and completely wish they were safer for us to take. But living with no Quality of Life can be at issue for some people. I think researchers are stuck in a hard place, right next to a rock. Help someone with a condition and keep the side effects to the greats minimum. I, for one, am always researching medications to find the least invasive.....but I admit that I would take almost anything to live a good life. Thankfully, what I need right now is very little.
I can see how a session every so often with a Phsyc can help. It's tough to live with any chronic illness. It's tough for your family and friends as well. Hopelessness is so hard to fight when you struggle to fight pain, twitches, itches, whatever the symptom is......it can wear you down.
I hope you know that we certainly undertand your plight and share your struggle. You've found a great bunch of people here. We share ideas, thoughts, and feelings.....we teach each other. Education and support can make a huge difference.
Welcome and feel free to jump into any conversation on the board.
Becat "OLDTIMER"

[Andreas]

I was on thalidomide for 3-4 months and it really helped RLS but in New Zealand you need goverment health permission to get the ok.After a few months I got burning feelings in the soles of my feet and couldn't hold things in my hands very well , the longer you are on this med the bigger the chance side effects will become fulltime for life so I stopped.
I now feel its better to go back to thalidomide which did help and &%$! the long term side effects as you know how bad it gets painwise.
Its being used in third world countries for leperosy suffer's but you can not have children safety which sadly is happening again with the same birth defects as happened when the drug came out in the 60/70's.It works on the nerve endings in a pain issure and worked a bit for me, whether its worth the risk for you to use is a hard question only you can work though.I know I was scared while using it but long term pain has a way of making you change your mind ! so I am currantly getting approval for it again.Hope I'm not sounding too negative in my posts I'm really a postive person its just this condition really! I am lucky I don't have the pressure of work still over me, I did for a long time and burnt myself out working longer hours than I wrote on timesheets to try to keep my job. I see coffee is a big no no, I drink a fair bit to stay awake but have cut down.Doctors have interestingly told me that up to 5 cups a day can help pain! Is there anyone else from New Zealand on site too? anyone reading this can they past my email details/post on to them or tell them of me? I hope to meet more US people as well as others too
Karl. (P.S my other hobbie is cars, I have an msn site called "Galeforce Zephyrs", sorry no RLS stuff there!)