ok, soorry if this is all kinda jumbled and stuff. need advice while blowing off steam. thanks

ok, FINALLY gonna see a pm doctor. its nice to know drs listen so well about me wanting to see one for the past few months....

idk when im seeing him/her but just wondering, any suggestions of what kinds of medicines/tx options you have found to help.

so far, i havent tried a lot bc im severely allergic to vasodiolaters which are in some meds, i dont like having to remember to take a lot of meds bc of memory, and bc of a dr (never met him exactly, long story) who believes in NO pain meds/patches and doing intense pt hours upon hours. ok, i tried that. obviously it didnt work. mom still emailing him even though i told her i dont agree w/ him or like him. and she agreed for me to receive a survey thing to fill out that she "forgot" to mention to me but she mentions to everyone else. and i find a lot of the things in there to be offensive. it doesnt help that the front says: childrens hospital etc etc, the behavioral health center. consent for voluntary outpatient mental health examination, eval, and/or tx.

i am sooooooooooo tired of being told that its all in my head by drs and everyone else. heck, my last dr told me i need to get a life and i need to that i can push through the pain if i want to and there is no reason that my hand should be contracted but i choose to have it that way and my joints feel fine and so on.

thanks for listening. just a lot has happened so quick and yeah.

nikki

OMG! *Extra Big Hugs* for you. Yeah, stress is something we don't need yet we can't seem to get away from it. I shouldn't be surprised at wat some people will do and/or say to us but geez....voluntary outpatient for mental stuff?!?!?! Trash it and forget it don't let it get to you. A lot of us are told the same thing, it's all in our head you can get better if you want to, it can't hurt THAT bad!!! Well, spend 1 day, just 24 hours in my body with no meds and no way to even dampen the pain by so much as 1/2 a point on the pain scale and then say that to me again!!!!!

Yeah, we choose to live in pain because we like it so much and those with atrophy they can't reverse or a claw hand or "stuck" foot did it on purpose and leave it like that because they enjoy not being able to live the normal life they had before this monster came into their lives. *rolls eyes* Good grief!! Oh and let's not forget the color change of our limbs, the hair loss, the temp change, we can do all of that with our minds too!! Well, if that's the case, then we should all be stinkin, rollin in the dirt, filthy rich for being the best, most supreme actors and actresses in the world!!! *feel the sarcasm rolling off the words?* ROFL

That attitude is a definite sore point with me and always has been, sorry if I rambled off a bit. It's unreal that people think that way. If you've tried to educate others with information you printed out, sent them to websites with reliable info and have generally done all you can to make them understand and they still don't "get it", then chances are they never will or don't want to. It's very sad and makes our lives more stressful than it needs to be. *huggles*


Now to answer you. The only thing I found that helps me is vicodin, baclofen for the muscle spasms and limb jerking thing and lyrica which helped lower my pain a bit and also alieviated the numbness in my legs. I take the pain med when I hurt, the baclofen 2 x's a day 1 when I take my morning pain pill and the other when I take my simply sleep at 11pm and since I do believe I found a way to get lyrica a a seriously discounted price, I will take that at night to begin with then may switch it to the morning med. I don't have such a good memory either so I try to make it as easy on myself as possible.

Having a pill box that you put your meds in for the whole day or the one that has am meds and pm meds on it is very helpful and since it's right beside you you can't forget to take them. For me, nothing else med wise or treatment wise helped me. I took just about every antidepressant and it made me have really super nasty mood swings after 1 week on it, neurontin did that to me too and cymbalta gave me sharp, stabbing pain in my stomach. What works for each of us depends on our bodies. Generally we all end up on more than one med though because one pill can't treat every symptom we deal with. It's just a matter of whether you can handle the symptom without a med or not.

I wish you much luck with the pm doc and you can find what works best for you.

Hugs,

Karen

lol. thanks karen. i couldnt agree with u more we must be magic!

yahh. educating people is pretty hard. thankfully, i have 4 really good teachers at school who are not scared to ask questions (prefer that to strange loos) w/o getting too personal. sure, they still dont "get it" but they try to and accomodate really well. haha, last year i had a teacher that didnt notice i was in a wheelchair until i said i was going homebound and needed to know if i had to drop the class.

thanks 4 the suggestions. ill have to write them down.

Nikki, First of all HUGS! Its very hard to make people understand what we are going through... many of us dont have visable symptoms all the time and its easy for them to make comments or say things that they have no idea about...

As for the its in your head comment, or just shut up and you can make your self feel better if you just tried... Sorry to say get use to it but at the same time it makes me so upset... I got this about a year ago and had to try and make people understand needless to say i dont have any friends left.. Sad deal but you also learn who is true and who isnt...

Medication ways differnt things work for differnt people... I have learned to like Opana ER however i was taking a really high does, 180 mg 2 x daily they switched but i will prolly go back to it. I am on cymbalta, nerution, busporine, serquil, xanax, trizidan, percocet, and some new pain med. it starts with an A. and i really dont like it...

There is this wonderful pill case at Target, I couldnt find a picutre of it... but its a 7 day holder with 4 slots so taking your meds at 4 differnt times a day... Which i do... I love it! So you can fill it to take your meds every 6 hours with the 4 slots and fill it for a week so you dont have to mess around to much with just fill it once every week!

I would try the OPANA... Really i liked it alot....

i hope things get better for you and you and you find a med that works to help with the pain a little bit... Ohh and the lidoderm patches are wonderful... About the PT... It makes me 100 times worse.. so i know where you are coming from with that....

Good Luck J

Pain free hugs and good day coming!!!

I'm sorry you have to deal with this issue. For some reason it sounds like kids get the, " it's in your head thing more so then adults." The Mom's have to be the adult and the Drs. only seem to want to listen to them. The only sad thing is, the Mother is not the one in pain and doesn't know everything you are going through.

I would be upset about the mental health survey too but I will say that I think a lot of people deal with depression with RSD. The Drs. should understand that the depression comes with the RSD.

It sounds to me like your Mother is not listening to your wishes as much as she could. Again I think that comes from the fact that they don't know the extent of the pain you are in and going through.

I am glad you are seeing a PM Dr. Lets hope he's good and knows a lot about RSD.

As far as meds. The lidocaine patch is very helpful. You can slap up to 3 of them on where ever you are in the worst pain. I'm on Methadone but there are a lot on here that can't take it. It does more for me then any I have been on with the least side effects. I don't remember how old you are but that might have a lot to do with which meds they let you have. They are learning now that kids bodies are so different from adults that they can't take the meds that the companies thought was ok for them to take. There are a lot of meds out there though that they could give you. Too many to name but antidepressants, spasms, and the pain are plentiful. The others will come on here and tell you about theirs. I tried them all and like you, I couldn't handle them.

My fingers curl up also but with massage they finally straighten out. I'm lucky though I have a lot of my RSD in remission.

Have they tried blocks on you? Can't remember. Like you, I have no memory left. I get so mad at myself at times because I have forgotten things I shouldn't have.

As far as PT. I listen to people talk about the aggressive PT and I donot believe in it for anyone with RSD. Hell if you wanted to run a marathon later on, you'd get into track training. I don't know what these PT'ers and Drs. are thinking when they put people into aggressive PT. I had one PT'er that tried it on me and I just refused it. There was no way I could ride an exercise bike or treatmill at that time. Now I can do a treadmill at my own pace but not an exercise bike. When I first started out the PT'ers had ordered me a wheelchair and my Dr. said no to that but he also said no to aggressive PT too. He was determined to keep me out of the wheelchair but the way we did it was with massage therapy, heat treatments, the therapist worked on my hands and fingers by massageing them and later going to stretching them a little.

I never got, it's in your head thing because I was curled up like a little old lady and my Drs. didn't know if I'd make it or not. I don't understand though why they give it to you when they can see the shape you are in. I wouldn't want to go back to a Dr. like that either. Some of these Drs. are so set in their ways though, I wonder if they believe in RSD or not. They come out of those damn schools being taught one thing and they think that's how it is. Some keep going back to school to learn, others don't. You soon learn by going to them if they are open minded or have that Godlike attitude.

Sorry, I get on the soapbox about certain things too. Bring your Mom on here and let her read some of the things the girls and guys write on here. Look at what Ali is going through with the Doctors and PT'ers she has. Basically the same thing. I can't emphasize enough, if you have Drs. that won't listen to what you are saying then you don't want them. They have got to listen to the patient with RSD because they can't see the pain we are in.

Another thing, I see people with Drs. that they really like and by the time they are done they are no better but they have what they call " great Drs."
I'm thinking ok, what part of this is great. Same shape they were in years ago, same meds they were on years ago BUT getting worse all of the time.

I hope you do find that right Dr. that will help you soon. Hopefully it will be this PM Dr. and do go in prepared. If you can't remember what you want to ask, write it down. Also write down some of the meds you want to ask about in case he doesn't think of them.

I can tell by the way you are writing you are smart and know that how they are treating you is wrong. That's the first step in getting things done, keep speaking up for yourself too.

Ada

Hello Nikki,
Sorry you are feeling as though you are not being listened to at the moment. It is the last thing you need.

I hope this new PM doctor will be able to give you and your mum some answers and there will be a concrete plan of care for you that will be one you feel confident with.
It is also a confusing time for your mum too. I am sure she only wants what is best for you . Being a mum just comes with feeling the intense need to "fix" you. It is hard for her too as she gets so many mixed and confusing messages from health professionals.
Being asked to have a mental health consult is NOT inferring that they think your CRPS is in your head but the psychological part of CRPS is huge. I realise that to some people there is an instant need to reject the suggestion that this has anything to do with the mind and I am a strong believer that whilst this is not a disease that is caused by psychological problems it can quickly become a big part of our problems when pain is such a huge part of our lives.
It is not a sign of being crazy or weak, how do we go through this without experiencing depression or some type of post traumatic stress disorder
Having said this I DO believe that this can impact us getting better when fear and confusion contribute to losing faith and our focus on getting better.
This does not make anyone less of a person to need psychological support, it is an important part of the multidisciplinary approach to the care of CRPS.

I am pretty sure I know which Doctor and Children's Hospital that you are referring to as I have read about him in many different forums and it does seem that despite what some people may perceive of him he has a wonderful team which gets some excellent results, some of which I have read as quoted by his patients.

Treating children certainly requires an entirely different approach to treating adults, this is why it is so important that you have a team which you feel confident has your best interests at heart. Sometimes treatments might sound just too scary or impossible but please remember that the chance that you will get better is so much more likely because of your age.

Nikki you are not mad, it is not in your head but having psychological help as part of your care is imperative. Depression and fear and the feeling of helplessness really can make our pain worse and therefore impact our healing.

I am sending you wishes that your best Christmas present this year will be having a new PM doctor and team which will listen to what you are really saying and that will include you in decison making about a management plan that you all can feel confident about.
Love and luck
Tayla

Hi there,
I am not sure if we have met before, anyway please let me introduce myself:
My name is Alison, I am 12 years old and I suffer from CRPS in my right arm and left leg.

I am so sorry about the problems you are having with your PM doctor, I know how you feel. My Physiotherapist is horrible, she believes that my CRPS is all in my head, I too am currently waiting for a referal to another hospital. Please can I tell you that CRPS IS NOT in your head, CRPS is physical nerve damage. Don't listen to anything that your PM doctor/physiotherapist etc says about CRPS being in your head, it is not.
If you don't agree with some of the things that your doctors saying to you, then please stick up for yourself. I went for months without saying anything to my doctors until one day I had enough and told them that I didn't like what they were saying to me, and I felt a lot better for it.

The reason that you may be seeing a Psychologist is to learn how to cope with the pain/depression etc. CRPS is NOT pyschological but it as Psychological eliments, for example you are depressed because you are in pain, you are angry because no one can make you better etc, etc. It IS hard to understand fully what CRPS is.

As for Pain medication, I am not sure what I can suggest because I haven't found any medication that helps to take my pain away. I have tried Lyrica, Baclofen, Amitriptyline (caused a nasty side effect of "Blurred vision"), Tramadol, Paracetamol, Ibuprofen, Gabapentin, etc etc.

How old are you? I hope you don't mind me asking, the reason I am asking is because most doctors don't like to give children strong pain killers. It must be really hard for you being allergic to vasodiolaters.

I hope I have helped you a bit, if you need anything I am always here
Wishing you a Pain free Christmas and a Happy new year
Love
Alison

Thanks tons

wildberry: oh yeah! i think we still have a pill holder like that. mom is psych nurse and gets free things from drug representatives. they r cool.

ada: yep, tried one block when rsd just in right foot. after block, spread to both and more pain. not a fan of blocks.

tayla: thanks. yah, that would be a wonderful xmas present.

ali: hey. ive seen you before on here but i dont think we have truly "met" yet. nice to meet you. nahh, i dont mind. im 16 (well almost, turn 16 on january 3rd). i hope you find a good dr too

Nikmcjo,
Many thanks for your reply. I too am not a fan of nerve blocks. I had a block on my left foot in July and it caused me to suffer from Balance problems (my leg shoots out in front of me)
Please keep us informed on how you are
Thanks
Alison

((Hugs so much too Nikki!!)) I was told... now get this... by a PT lady who's husband is a pain Dr. that if I keep on thinking that my left side will spread it will.. JUST BY THINKING OF IT!!! I fired her!! You go to a good PT dr. by asking around, going to see first if they are going to give you meds BEFORE PT. This is what my Dr. does.. I have my block done, then PT along with the fenatyl patch. Some Dr.'s don't like giving meds out because they don't feel what your feeling, so thus.. no caring! I say look around sweetie, you'll find a good one. I had to go through 4 before I found Dr. Engle. He is wonderful!! ~Love and hugs to you! Desi