[ali12]

I'm in a bad place at the moment. Really down and depressed, get teary over the slightest things etc.

Had an appointment with PM Doctor today as been having lots more pain in my back and leg. He's basically said that the RSD's spread to my back (which I already kinda knew but is still hard to hear from a doctor) and that theres nothing more he can do. I've been given a TENS machine and told to try that and go to PT.

The Baclofen Pump was mentioned a few months ago however now I have the back problems, my doctors not willing to do that. I had my hopes set on that working and now they've just been dashed !

I don't know what to do. Mums wanting to get me transferred to adult services to see if they'll help but it takes soo long to arrange here in the UK! I'm sick of being sick and tired! I wanted to scream at my Dr today when he said theres nothing he can do. I'm sick of not being able to do much stuff, not have a normal teenage life etc ... you get the idea. I'm lucky to have a supportive mum and boyfriend but the rest of my family and friends just don't understand and aren't there! I've lost soo much due to this illness and just want to go back to my old life.

Anyways, sorry for venting. Just had to get it off my chest. I know you all understand. xxx

[SandyRI]

Oh Ali...you have really had a rough time of it lately. I'm so, so sorry.

You can't give up. Please...you are an inspiration to so many of us. I hope your Mom will persist in getting you to another doctor that has more compassion.

BTW- if you already have RSD in your back, why can't you get the pump? most who have the surgery experience spread to their backs after it's been implanted. You definitely need a better doctor! one of my RSD friends just had a pump done, please let me know if you would like his contact info...(and he has RSD in his back! - and his legs, and arms, etc..)

Ketamine is also a great treatment when nothing else has worked. There are countries near you where it is available - notably, Germany. The treatments can be real expensive here in the US. But check out Europe which is closer to you and probably cheaper.

please, please keep searching for the right treatment for you. And keep in touch because we all care..much love, Sandy

[lorigood243]

Dear Ali

i think of you often and am so sorry you are going through this! i know some days are harder than others...please hang in there. Never lose hope. Like Sandy said, try other things..If something doesnt work today...it might work tomorrow. We need you here, you inspire me and give me strength we all help eachother even when we dont know that we are.

f you dont have one, try starting a happy journal. you write down things that make you happy and when you are having a bad hour. or bad minute..read some of your happy things and even just for a short while..you have happy thoughts. it could be a kitten purring or playing with string..im a cat person so thats on my list...the smell of my favorite flowers, i light fragrant candles to change the smell in my room...i have internal RSD..so i am stuck in bed most of my day..so i try to find ways to get me out of depression.
hugs and blessings
Lori

[Lisa in Ohio]

dearest Ali, I am sorry that you are so down right now. You are always such a bright light and inspiration here. I hope that your care can get transferred soon so that you can find a doctor that has some ideas on how to help you. prayers, my young friend, Lisa

[debbiehub]

Hang in there Ali ! You are always an inspiration for me. You seem so brave and full of life- don't let RSD take that away from you. There is so much research being done...They just found a treatment for Lupus!.. I don't know if you ever thought of going to the Cleveland clinic or Boston -I think Mayo- if possible?

[RUReady]

Ali , you are indeed an inspiration to many here and wanted you to know the quote at the bottom of your post has kept me going on many a dark days..... To the World you may be one person, but to one person, you may be the World.

[fmichael]

Dear Ali -

I am also very sorry to hear of your current problems. Understand that the NHS is cost-conscious and have assumed that's why ketamine infusions aren't part of the solution-set in the U.K. I also understand the bind that exists for U.K. citizens, where obtaining medical treatment for a non-emergency situation outside of the NHS (as in, anywhere in the world, if one could afford it) could easily result in a lifetime ban from receiving NHS services.

But I do have a question, which may cover ground you've been over too long, if so, my apologies. Have you been seen as an out-patient and/or participated in the full in-patient CRPS programme at the Royal National Hospital for Rheumatic Diseases in Bath, under the direction of Prof Candy McCabe, Consultant Nurse? http://www.rnhrd.nhs.uk/departments/...n_syndrome.htm

I have been impressed by Dr. (she has a PhD after all) McCabe's online talks and publications, and know someone who is fortunate enough to have her as her pain specialist. And if a physician were to submit a referral on you behalf, I would seriously recommend including some of your poetry, noting your age when any particular piece was written, so that your potential cultural contribution to this world is out there. Any health system has a way of taking care of "high value" patients.

Pending that, search the forum for Dextromethorphan. At therapeutic (prescribed) levels, it's cheap and some people have had amazing results with it. It has few side effects, and is second only to ketamine as an NDMA receptor antagonist, or in plain English, can break up the pain mechanism quite nicely. For what it's worth. Again, you may have been there a long time ago.

Finally, in light of your incontrovertible verbal and metaphoric processing abilities, may I suggest a mixture of Existentialism and Tibetan Buddhism? The person I have in mind for the job is Pema Chödrön, an American Buddhist nun and abbot of Gampo Abbey in Nova Scotia, the first Tibetan monastery in North America established for Westerners. And the specific book (although I've gotten a lot out of anything of her's I've read) is When Things Fall Apart: Heart Advice for Difficult Times (2002), widely available in paperback. From Amazon's review:

Much like Zen, Pema Chodron's interpretation of Tibetan Buddhism takes the form of a nontheistic spiritualism. In When Things Fall Apart this head of a Tibetan monastery in Canada outlines some relevant and deceptively profound terms of Tibetan Buddhism that are germane to modern issues. The key to all of these terms is accepting that in the final analysis, life is groundless. By letting go, we free ourselves to face fear and obstacles and offer ourselves unflinchingly to others. The graceful, conversational tone of Chodron's writing gives the impression of sitting on a pillow across from her . . . .

For me, I was struck by how much her treatment of acceptance in the face of the ultimately unacceptable reminded me of the hard-boiled existentialism I had read in a Humanities class in high-school too many years earlier. Then, on the last page, she finally quotes Jean-Paul Sartre in a blinding finale:

There are two ways to go to the gas chamber, free or not free.

As I understand it, we are free if we enter into each moment solely as the present. We are not free if each stimulus in the here and now just plays on a thousand strands of undigested personal history, so that what we are aware of is not the moment itself, but the reverberation of all that has come before.

I hope some of this can be helpful. Bring your talents to bear and it will work out, you'll see.

Mike

[daniella]

I am so sorry for all you have and continue to face. I wish I had words to comfort you. Are you in the program you were going to attend? I know things are different in the UK then US in terms of treatment. Is there any way your current docs could rush things for you to go to the adult like suggested by your mom?
Though the rsd may have spread I do feel there are always treatments or meds to help. I know a girl your age who was in a wheelchair and had to take I think a year off high school. Her rsd spread through her body and she had tried so many treatments/meds and saw so many docs etc. Then finally she found the right treatment for her finished school,is in college,doing physical activities etc.
I know right now it is hard to think that could be you and I feel the same for me but it just takes 1 treatment or 1 doctor to make a huge difference.
I am here if you want an email buddy too.
Sending feel better thoughts

[ballerina]

Hi Ali,

I am so sorry you are having such a rough time. I concur with Mike!! Try to get in to see Dr. McCabe. Get on line and google Dr. Candace McCabe. She is on the cutting edge of cortical reorganization which has shown great promise for intractable CRPS.

Do not give up!!!!! There are many parents who would be blessed to have a daughter who is as mature, articulate and bright as you. These qualities will help you prevail over CRPS!!!

Teri

[Sonny1]

Originally Posted by ali12

I'm in a bad place at the moment. Really down and depressed, get teary over the slightest things etc.

Had an appointment with PM Doctor today as been having lots more pain in my back and leg. He's basically said that the RSD's spread to my back (which I already kinda knew but is still hard to hear from a doctor) and that theres nothing more he can do. I've been given a TENS machine and told to try that and go to PT.

The Baclofen Pump was mentioned a few months ago however now I have the back problems, my doctors not willing to do that. I had my hopes set on that working and now they've just been dashed !

I don't know what to do. Mums wanting to get me transferred to adult services to see if they'll help but it takes soo long to arrange here in the UK! I'm sick of being sick and tired! I wanted to scream at my Dr today when he said theres nothing he can do. I'm sick of not being able to do much stuff, not have a normal teenage life etc ... you get the idea. I'm lucky to have a supportive mum and boyfriend but the rest of my family and friends just don't understand and aren't there! I've lost soo much due to this illness and just want to go back to my old life.

Anyways, sorry for venting. Just had to get it off my chest. I know you all understand. xxx

You have been such an inspiration to many (including myself, the newbie here). All of this illness and trials of med's and machines I am sure make us all have days where we want to throw in the towel, but that is what this support group is for. To let out all of your feelings without judgement. People here get it, breath it, live it, feel it all. You are entitled to some down time, but you must keep going and keep us going as well. I had many horrible days until I found this forum and even in the worst of pain, I click on here and read others postings and know that I am not alone. Please hang in there, regain your focus and determination and keep us posted!!!