Alisons mum here
We are just back from our OT and Physio appointment and it has raised a couple of questions
Firstly it has been noticed that Alison is extremely tense and finds it extremely difficult to relax and switch off
This is not helped by the fact that she is low toned and has hyper-extending joints (ie she is double jointed)
The Physios and OT have mentioned that because Alison is so tense it may be making a lot of the RSD problems worse and also that the spread to her arm may not be RSD but a build up of tension (although her Consultant still feels the arm is showing early signs of RSD - eg burning pain, dystonia)
I have to agree that Alison is exremely tense - in fact she is like a coiled spring most of the time ready to snap at the slightest problem
The issue is that the tension has increased dramatically from the day Alison was diagnosed, a lot of which in my opinion, is to do with the fact that no-one can guarantee her when, if and by how much her illness will improve
I have been advised that reading these boards may not help her, but she is a well-educated and opinionated girl who has a desire to know as much about her illness as is possible and does not want to be "sheltered" from the truth
The problem is that at 12 years of age she may not be emotionally mature enough to deal with the information she is presented with, thus adding to the tension
Further to this there is also the question as to whether the tension is another side effect and has no direct bearing on the balance problems and her pain
At the moment we have not managed to find a drug which will take either of these problems away and have tried most of the "usual suspects"
Has anyone else experienced similar problems with a build up of tension and if so how did you handle or overcome it
Many thanks
Andrea

Hi Andrea,

This is soo rough for you as a parent. Ali is very tense because she is in alot of pain. The pain of RSD is 24/7 worse than any 3 children I delivered.

If I recall rightly, your lovely Ali is only 12. You have got to be a advocate for her.

I personally believe in my case something broke the blood brain barrier. I will find a MD that knows what they are doing if you think this is the case for Ali.

I need to ask you if Ali has a weak immune system as well.

In the meantime if I was you I would write down every SX she has. Doc's like to have their I's dotted and their t's crossed as well, they will put more thought into it let's say. Hang in their with her, she's in rough shape. Much Love, Roz xxx

Hi Andrea,

I've followed you for the last few months. I can say what I have experienced and maybe it might help Alison.

First, I was told I was very tight and full of tension when I started dealing with this - which was in February when I was finally diagnosed. The therapist wouldn't even work on me.

I went into PT appt and the therapist said - where you outside in the sun? You are beet red. My nerves were so inflamed -

What she said to me is to find a way to relax. The first time I heard this I was angry - how am I supposed to relax when I'm in pain? But, she was right.

I try to find a way to deep breath and meditate twice a day. I have an ipod that I listen to. I personally listen to songs for sleeping, ocean sounds and sit and deep breath and let my shoulders down, stop gritting my teeth because of the pain. I realize that's hard for a 12 year old.

If it's possible for her to sit quietly, deep breath, close her eyes, drop her shoulders and relax her jaw. - deep breath for even 5 minutes.. think of something that is positive. It really does help in reducing the pain.

What I've found is tension and stress increases pain. If these can be reduced, you're that much closer to a reduced pain day.

No sure this helped, but atleast you know there is someone far away that hopes that Alison is ok.

Beth.

I know exactly what you mean here too. My physical therapists would always tell me "Relax, it is okay", but I knew it wasn't... between the pain (and like you said) the no- guarantee of getting better, it is pretty hard TO relax! I will be in bed realizing that I am all tense, my body is as stiff as a board and my muscles are all tense. Ali, try the best you can to relax your muscles, it really does make a difference pain wise! ((hugs))

Please check www.ednf.org to read more about the hypermobile type of Ehlers-Danlos Syndrome. The hypermobile type predominantly affects the joints.

The Classical type predominatly affects the skin.

And, the Vascular type predominatly affects the arteries and veins.

Each type is separate and distinct from the others - meaning that if your daughter does not have fragile skin that does not mean she can't have the hypermobile type.

Of course there are a LOT of other issues involved such as you have described in your posting. That is why I have responded with this information for you.

In particular, us hypermobile types (yes, I have HEDS) tend to have sever and widespread chronic muscle spasms and hold tension throughout our body - because the muscles are trying to compensate for the laxity of our joints. I hope this makes sense to you and that you will look into this.

I wasn't diagnosed until age 35 and if I had been diagnosed earlier my quality of life might be a lot better now. Best wishes to you and your daughter!
Mags

Ehlers-Danlos Syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders. It is a progressively debilitating syndrome that can cause loose unstable joints which dislocate easily, skin fragility (tears and bruises easily), and/or organ fragility (major organs, veins and arteries can spontaneously rupture). EDS affects about 1 in every 5000 people; however it is grossly under- and/or mis-diagnosed: some 80% of people with EDS do not receive a proper diagnosis or treatment within their lifetime. We are working to change this statistic by raising awareness of this disorder within the medical community and in society at large. The EDNF is a 501(c)(3) nonprofit organization.

I know how she feels!!

I don't think anyone who does not have RSD can understand what the pain is really like. No matter what you do, it does not go away. You tend to hold yourself tight to protect yourself from more pain.

My massage therapist says my muscles are the tightest she has seen in 15 years of practice. I am now taking baclofen, which is a muscle relaxer, and it has helped. But, I am still very tight.

My I recommend a book to you? It was recommended to me by FMichael here on this board. It really helped me when I was diagnosed, with dealing with the pain.

Break Through Pain by Shinzen Young. (maybe it's Breakthrough - one word, not sure and I am at work, so cannot check my book to see) It is not expensive, and has a CD with it for meditation practice... but honestly.... I think reading the book was the turn around for me. Showed me how to have the pain without the fear.

Jules

Hi Andrea,

When I was first diagnosed I was warned by many to stay away from these sites. Obviously I felt that I could deal with them and I have but to be honest, it maybe a little too heavy for a 12 year old. We do read the worst case scenarios here.
Allison does sound a very mature and gorgeous girl but being in pain at that age would be so very scary and sad and to read the problems that many of us have may just give her a feeling of doom.
As mature as she appears a 12 year old does not have the brain maturity to comprehend that what she reads here may not be a true representative of the disease, as for every person on this site with RSD there are probably several more who are managing the disease quite well and getting on with a fairly normal existance.
Fear does impact all symptoms and can definitely result in increased tone which in turn creates more pain.
As her advocate and has someone who knows her better than anyone else
I am sure you will know how much is too much but if it was one of my children I have to think that like most things on the internet I would be screening just what she does read.
Have you thought of relaxation therapy? Does she have a psychologist? This is so much for one so young to live with that she really needs all the psychological support she can.
She is so lucky to have a mum like you who is obviously so loving and caring.
My heart goes out to you both.
Tayla

Hi Andrea,

Having Ali only be 12 I can totally relate because I was 13 when I first got RSD. So I 100% agree with Roz's comment, You have to be her advocate!! And her biggest supporter and cheerleader.

Without my mom, I would definitely not be walking today because when I was 15 my muscles were completely exhausted and the pain was soo bad and I wanted to give up. Without my mom I would have. She made me do it, go to physical therapy and made me get up every morning and do what I had to do so I could get where I am today with college and jobs. I definitely couldn't do it without her and in 9 years when Ali is my age, I am sure she will be saying the same thing! I am not saying that I don't live in pain because I do but it always helps have someone in your cheering section!

Don't give up.

i was 12 or early 13 when i first heard the random dx rsd, i think i was a lot like ali i wantd to know everything unfortunately the more i read the more stressed i got. the information helps if you are one of those kids who wants to know the best and worst case scinerio stuff. i found that the stuff that said i couldnt do something motivated me to do it...of course it hurt for a while afterward but i felt better knowing i could do the things they said i couldnt.
im not sure if i mentioned it before but the hyperberic chamber really helped me when i got into that stressed up ball that felt like moving was awful. the lying flat on a bed was a challenge but they added pillows that helped and the extra oxygen really helped to calm things down