Ever feel like giving up?
 

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

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

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

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

Hi Ali
 

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?

Ali
 

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.

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. :BeamUp:

Mike

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

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

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!!!:hug:

@Mike
 

You are amazing!!...

Thank you all SO much for the words of comfort and support, it really does mean a lot to me.

Things are still rough. Still really depressed and guess I am still mourning my old life and the things I used to be able to do then that I can't now. Went to a Disney show with my boyfriend tonight which was good, really painful though but it did help me take my mind off things just for a bit. I guess I just want to go back to being 'normal'. I see teens my age doing activities that I can't do and that really upsets me ... I want to be like them.

Sandy - The reason my Doctor is so unwilling to do the pain pump is because every time I have had an invasive procedure in my RSD limbs I have had severe complications. I had a nerve block in my RSD leg and ended up losing all my coordination and later had an ingrown toenail removed which caused me to develop severe myoclonic spasms. I guess he's scared that something similar will happen (like I am) but what frustrates me is that he wont even do the trial to see how i'd react. My mums said she will sign a disclaimer saying if anything goes wrong it isn't their fault but he still isn't willing to go ahead.

Mike - Thank you soo much for the info, it is valuable to not only me but to everyone else on here. You are right, the UK is SO hard to get treatment and anything seen as non urgent can take months, sometimes years to get treated. Even paying private which we have thought of doing takes a while to sort out. Every medication suggested as to go through approval so we can't get things as easy as you guys in the US can and Ketamine infusions are only used as a last resort and in adults.

As for the Doctor in Bath, thanks for the info. My mum and I actually travelled to Bath Tuesday (4 and a half hours away) and saw Dr Clinch there. My PM Dr refered me to them as he said I really need something to help me 'cope' with things, especially as I have been really depressed lately. The Doctors there were really nice, spent an hour and half with me going through my history and said they wouldn't examine me as they knew it'd cause me too much pain. They said I am suitable for their 3 week intense PT / CBT Course and wanted me to start the next program available in May but I have my big exams that I can't miss so will have to wait until the beginning of July now. The only concern my mum and I (and local PM Doctor) have is that when the program was explained to me, it sounds a lot like what I have been doing at home. It's PT based with Psychologists etc so we aren't sure how much i'd get from it. My PM Dr adviced going as he said it wouldn't cause any harm, but he is concerned as to how much benefit i'd get. I guess its worth giving a shot though.

I hadn't heard of the Dextromethorphan you suggested but will get my mum to call my Doctor about it. Interesting to read it's used for coughs.

An RSD friend of mine in the UK suggested seeing a Dr in Leeds that is very well known and really good at suggesting things most doctors don't so my mums getting me a referal to see him as soon as we can. He implanted the SCS on my friend and she got 70% relief from the pain so I guess thats worth looking into, though again it's only used as a last resort and i'm not sure if they'd be willing to suggest it given the complications I had from the nerve blocks previously.

Thank you all again for the support, it really does mean a lot. I am trying to stay positive, it's just SOO hard at times (I know you all understand) xxx

Good distraction
 

It was nice to hear you went out with your boyfriend and had some normal time. I am almost 60. I hope you get to do alot of other good things for you. Just don't give up. I did receive Katamine infussions before I had spinal fussion. It did work for a short time, but didn't solve the underlying cause of my trouble. I didn't know that it was so much harder in the UK to get these kinds of medications. Can you get into a medical study? I am wondering if it would help you to get these meds by entering a study sooner. Just a thought and I do wish you all the best. ginnie ps...do you read?, I find it helps me to wander into another adventure...helps with depression

Dear Ali -

It's good to hear from you. And it certainly sounds as though you have been working almost all the of the angles, which comes as no real surprise. And you certainly have all of your intelligence and bearing about you, despite all you've been through. Points that are not lost on those close to you, would be my guess.

And, for what it's worth, I think that staying positive is great, even just as an exercise to prove you can do it.* The important and remarkable thing you have already achieved is to understand and to large extent measure the strength of the pull for things to be the way they way you want then to be. What I suspect though is that you have absolutely no idea how rare an accomplishment that is in someone your age. And frankly, to the extent that you can name the urge - call it "pull" - when it comes up, and note it just as that, but in a kind and gentle fashion, I suspect the happier you will be.

A final thought re Bath, while it may sound like the same old thing, keep in mind that it would give you two weeks of mutual exposure to some of the best minds in Britain on CRPS, source of contacts going forward. And what Teri said about Candy McCabe (she uses the nickname professionally) on the cutting edge of cortical reorganization is important, because as it turns out CRPS has recently been found to have joined depression as fundamentally a disease involving a "dysrythmia" of the fundamental electrical oscillations of the brain. (I have a couple of very technical articles for you is you want them, one of which would probably require a First in Mathematics from Cambridge to fully understand.) But the thing is, to the extent that treatments are approved for chronic patients - as opposed to the mirror box which stops working once its become chronic - it's the folks in Bath who will become aware of them, and with whom you'll wants to remain in contact. And yes, Dr. McCabe and her coauthors were not only was the first to prove the utility of mirror box therapy for CRPS in 2003, but also the first to recognize its temporal limitations, so to speak. So these may be a good group of people to get to know.

Okay, a final, final thought. It's fine to be sad and angry. Though the important thing is that when feeling like that come up, we don’t fight them at all, but deeply feel them for what they are, sadness, anger, etc. It doesn't hurt to label them. And then when they pop up simply label them, without any intension of fighting them. And the amazing thing about it is that in bot too long, they can just pass through you. And frankly, part of an intensive 15-day physiotherapy program may be to demonstrate that the same can be done with pain itself, although I would maintain there may be subtler ways of doing that. That, and meditation alone wouldn't give you the stretching you needed, unless of course you had just the right yoga instructor. Nor are all types of PT created equally: I'm going out on a limb here, but I'm guessing that the hospital in Bath may incorporate more stretching or "nerve-gliding" exercises, as opposed to strengthening exercises which are death to CRPS, based on my experience and what I've heard.

Sorry for going on so. Feel better.

Mike

* But only when it feels appropriate.

Dear sweet Ali~

My heart goes out to you and i am glad to hear this are looking up. I know how hard it is to go out and do things...but i am glad you pushed through your pain and went out. most people have no idea what it takes to get yourself ready to go any where when you have internal RSD. i mentally have to start the day before planning my every move sometimes. getting bathed, dressed, accesories whatever you will need in your purse..pain meds ect...So I applaud you for going out on a date. i hope you will have many more.

i was wondering ....in your local newspapers do any of them have a section on health and wellness? i was wondering if you contacted a local reporter to talk about your illness and how very long it is taking for you to get help and treatment fr your painful illness??? some times exposing your health problems locally will motivate the healthcare system and local doctors to do something for you so they wont be embarrassed.

my thoughts are with you!
Lori

Oh, my cheery little Ali...I so hate this for you...I do understand what you mean. I had a really bad weekend. The weather was cold and I fell twice and sometimes I get so mad that I am not the same person anymore. You are sooo young to have go through all of this. I will pray that you will feel better.

I know how hard it is to get the medical that you need in the UK, because my cousin lives there...take care and keep that sweet chin up:hug:

Hang in there.

There's always something new to try.

...And a few of them actually help a little.

Well, nuts, Ali. That's the pits that you're having such a difficult time lately.

Here's some gentle hugs for you, cutie. :hug::hug::hug:

How are you today?
 

Dear Ali

Its been a while since you posted. How are things today? or even the last hour? Sometimes its just getting through this hour to the next, and we feel even a little bit better an hour later. I am in bed mostly lke you, I know how hard it is to stay somewhat positive. If you dont do it for your self, you try to stay up for your family. I understand depression, but i try real hard to distract myself. I will find new topics to learn about online, God knows theres a billion topics! or watch good movies, or disappear into a book for a while. I havent felt much like crafting lately...my RSD has been flaring up bad..so i do what i can to get through till i feel better tomorrow.
hugs and blessings
Lori

Hi Ali,
 

I use the word normal a lot also. I have told my Dr. for years that there is nothing normal about me.

I do hope that things start going better and you get to feeling better soon. We just have to try and keep going. Damn hard but we have to work at it.

Ada