Hi everyone,

Today I had my Physical Therapy appointment. The PTs managed to get my splint from the Orthotic Doctor after a long chat so wanted me to try it on and see what I thought of it and how painful it was. It took them ages to get my leg into the right position and it was a nightmare trying to hold the splint and stop my leg from spasming. As soon as my leg got into the splint, it fought and started rotating out to the side, yet again. It really hurt and I was nearly in tears but managed to somehow stay calm. The PTs couldn't believe just how strong my leg was as the cast was made from a very hard plastic and still somehow it was managing to rotate out to the side.

The PTs took a good look at my leg and noticed that the whole of my leg is rotating, not just my foot so they are not sure if the splint is going to work. The splint has about 6 straps to try and hold my leg into position and they are really painful because of the hypersenstivity and rub my leg. The PTs weren't happy and said that some changes needed to be made and told us to go straight to Orthotics has they had managed to get me an appointment.

The Doctor in Orthotics wasn't very nice and he put the splint on my leg but didn't manipulate my foot and said that the splint was fine, even though my PTs had said that it wasn't. He said that there is nothing he can do to try and stop my knee from rotating, unless he did a surgical procedure and put a load of screws and plates into my leg!! I couldn't believe it when he said that!! The straps on the splint really hurt me and the PTs told him to put some extra padding on them to try and make them more comfortable but he said he wouldn't.

We left quite dissapointed that he wouldn't or couldn't do anything to try and make things easier for me and basically just told me to cope with the pain. My PTs said that we shouldn't even attempt to use the splint at home and that if I can use it, the only way I will be able to use it is in PT sessions and whilst I am walking. The PTs are going to ask the Neuro PT to come and take a look at me and see if she can do anything or suggest anything that may help. I go and see my PTs again on the 19th November.

I better go and try and rest, it's been quite a stressful day and to top it off my dad is being a complete jerk towards me and my mum.

Just wanted to update you all. Hope you all OK.

Ali, I am sorry the doctor wouldnt do more to make the splint better esecially after all you went through to get it. What a jerk. I am sorry your dad isnt being nice either. What a hard day for you hun. I hope it gets better. I am here if you need me.
hugs, Denny

Thank you so much Denny, for your kind words and support, it means a lot. I was so angry and frustrated that the doctor wouldn't or couldn't make any changes to the splint even though my PTs told him what needed to be changed and I didn't like the fact that he said that the only way I could get my leg straight would be to put metal screws and plates into my leg ... jerk! Honestly, what do these doctors have for bedside manners?!?!? I honestly don't think the splint will work unless they make some alterations and neither does my mum, Doctor and PTs!! My mums emailed the PTs to see what they suggest so hopefully they will be able to help.

My dad has been nasty for a while now, he is horrible to me and my mum. My mum wants him to leave and find somewhere else to live, yesterday he said he would but only if SHE gave him some money. Legally, my mum has to support me until I am 18 and nothing in the house belongs to him, so he should leave but he wont. He is verbally abusive to me and my mum, we have told him loads of times that stress isn't good for me but he wont listen or understand. It's so annoying being stuck in the middle of all of this.

I'm sorry for venting, guess I just needed to let it out to someone who understands. I will keep you updated. Thank you again for your kind words and continued support.

Alison

Ali,

Please allow me to say a couple of things. Many times men try to deal with difficult situations in life by fixing the problem. When things can't be fixed, they get frustrated because they can't make everything all right.

It is very possible that what you are seeing from him is his frustration at not being able to deal with (fix) your problems. I would even go as far as to say that it doesn't mean that he loves you any less. None of that excuses the way that he is acting toward you and your mum, but I hope this does give you some insight into the way things are going with him.

Hang in there. Trouble doesn't last always!

EJ

Well, that's just plain exasperating! Everything you mentioned. What an awful day for you. But at least the PTs got to see firsthand that the splint wasn't going to work.

Just thinking here: what if they shot your misbehaving leg full of Botox? I mean, they get people's faces to relax with it, right?

If the rest of you is as determined as your leg, you'll be just fine, Ali. Sending warm wishes, hugs and prayers your way.

Hi Ali,
Unbelievable, Doc sounds like he is not willing to take suggestions from anybody. The PT's know what you need, hopefully the Neuro will have a much better attitude.
I'm sorry Ali your Dad and grandparents are not supportive. I agree with EJ that many people are just not emotionally available.. I was 25 when my mom died from cancer. I had the wonderful privilege of being for her the last 4 months. I know my Dad loved my Mom, but he couldn't face what was happening, so he was gone all day. He retired when I was 16. My mom was only 46 and was a very painful 4 months. I treasure the time I had with her, as I know your Mum is there for you. But it's hurtful isn't it.

You are such a caring person, always thinking of others. It's so obvious in your posts.
It's hard as a Mom myself, to see you being so young, having this awful monster. It takes a lot of courage to face it and not let it consume you. You prove that dailey in your expressions of interest and availability in wanting to be there for others.

Take care of yourself, Loretta

Thank you all so much for your kind words, it means a lot. I'm sorry for only just getting back to you all, yesterday was a very bad night pain wise and I was up crying all night. I took my ketamine which usually takes my pain down but even that didn't help

kejbrew - My dad has ALWAYS been a very nasty man. He has been like this way before I was suffering from RSD. If anyone says anything wrong to him, he takes it the wrong way. I am sure he has anger management problems. I can see how he is upset that he can't fix it but like I said, he's been like it long before I developed RSD. His father is the same so I guess he got his attitude from him.

Twinkletoes - Thank you so much for your kind words. I thought the doctor was joking with what he said but my mum said he wasn't ... apparently my skin is moving around my bones and it is creating like carpet burns that then lead to lesions etc. When I next see my PTs I am going to speak to them and see if that is correct, after all, he didn't know anything about RSD!! It has been suggested to use Botox but my Neuro and PM wont use it has I have had complications from the 2 nerve blocks I have had. They said not to dismiss it but to give it some serious consideration. Thanks again for everything, love Alison.

loretta jewell - Thank you for your kind words. It wasn't my Neuro that was being horrible, it was the Orthotics Doctor. I'm sorry to hear that your mom passed away when you were young . My dad has always being nasty so I really don't think it's anything to do with my illness, he has been like it for many, many years now. Love, Alison

Thanks again everyone

Hi cutie! How are things going for you?

I don't understand how you managed to get a PT that didn't know anything about RSD.

I hope things start looking up for you.

Hey, I saw some new pics on your page! Las Vegas, baby!

Thank you so much Rochelle for your kind words . I have been in a pretty nasty flare lately, my arm is still hypersensitive to the touch near my wrist and pretty painful. The change in weather temperatures isn't helping either I don't think has one minute it's cold and the next it's really hot!!!

I go on Wednesday to see my PT's. When I last saw them, they gave me the splint but said that they wouldn't even attempt to try and wear it has some changes need to be made. We saw the Orthotics doc and he said that it was fine and that the only way he could stop my hip from rotating would be to put a metal cage with screws into my hip and knee . I thought he was just joking but my mum said he wasn't. I'll mention it to my PTs and see what they say, i'm not going down that route at the moment has I know it's very bad for RSD.

I'm glad you liked the pics of Vegas!! I'd love to go there again one day when I get things more under control.

I hope you are OK and thank you for asking how I am