www.rsdalert.co.uk
Warning and encouraging
If you have a story to tell, send it in for publication...
For correspondence help or general information click...
personal stories and notes from our correspondents
Maggie Fergus
I was first diagnosed with RSD in 1990 resulting from a fall that fractured
both ulna and radius of the left wrist. Under the circumstances, the
fragments healed in an offset position, giving a distorted limb. This
resulted in the swollen, glassy bluish appearance characteristic of
RSD. I was very fortunate in finding a doctor who recognized it and
treated me appropriately with pain relief and gradually into physical
therapy.
Two years ago I had the misfortune of having a knee replacement done
on my left knee. I haven't had complete use of that knee since. The
surgeon was very unsympathetic and told me it was my fault that the
knee was not healing, swollen and painful. He even cancelled all physical
therapy-with the admonition that I could do the exercises myself. In
the process, I also developed the sores on my swollen leg that I later
learned could be related to the RSD.
But, thank God, the doctor from 1990 stepped in, put me back into PT
complimented with nerve blocks and pain medications, which I was able
to leave, by the use of warm water therapy three times a week. My knee
was gradually beginning to respond, giving me the freedom to walk with
ease - except for the fact that the new knee made my previously bowed
leg into a longer straighten knee. Walking in turn aggravated this,
throwing out my lower back, hip (SI) joints, followed by my right knee
and now hip problems. Some of this has been alleviated by the use of
braces and built up orthotics in my shoes.
The latest MRI shows a large mass and a tear in my right hip. I have
been waiting for 2 months to get an appointment with the only doctor
in the city that does this type of surgery, and another wait to have
it scheduled. This is not too hard to accept under the circumstances;
since I am not overly anxious to have a procedure done that may produce
a bodily response as in the past.
It feels good to write this to people who, according to the stories
that I have read, know all too well what I am relating. It does take
over so much of a person's life, making one live within the borders
it sets. I find that mild exercise (as in warm water), yoga stretches,
breathing, music, meditation, and good books are a real salvation- and
do put some enjoyment into life. And I am very grateful that there are
some kind, understanding doctors out there - if you can find them. Maggie
Fergus
J M Spinelli
I have been an R.S.D. patient for 11 yrs. It happened while working as a registered nurse. I lifted a patient from the floor after he fell out of his wheelchair. I herniated disc L-3-4. After the usual course of non-invasive therapy from bed rest to injections into the spine, a simple discectomy was performed. Well, it ended up not being so simple; I needed another one the next month due to an accumulation of fluid and more disc fragments needed to be removed. That caused even more pain. To make a very long story as short as i can, I ended up with a fusion in1995 which helped for awhile until the pain became intolerable after walking a certain distance. My pain management M.D. thought that I just wasn't handling my RSD very well. I had to beg him to do a scan and, sure enough, the hardware was falling out. I had been walking in this intractable pain for over two years. Next, I had an anterior posterior fusion with bone graft from the other hip because my right hip was used the first time. The pain was unbelievable - unable to be described. Anyway besides the RSD and the severe spinal pain, which is the same as before the surgery, everything else continues to worsen. I won't bore you with them all; but now I have severe foot pain on the instep of both feet, especially at night, waking me from sleep. Does anybody else have this problem? If so could you tell me what it is and if it can be resolved? My pain management doc doesn't even address it. If anyone can help please e-mail me at Jmspinelli@msn.com.
Christina Guerreo
I am a thirty-six year old female with RSD. I was mis-diagnosed the
first three months by an orthopedic surgeon, who assured me he was never
wrong and I must be a an addict, despite the physical evidence (my foot,
leg , and thigh were the same size and discolored bluish/red not to
mention ice cold) and no previous recored of drug abuse. I also described
my pain the intense needling, extreme cold , sensitivity to the ceiling
fan and changes in tempertures. I argued with him until he sent me to
Standford were I was diagnosed immediatedly. Like many of you I am still
battling this wretched disease. I'm left with same old options none
of which are desireable. I often wonder how I function or remember the
things I do. I unsuccessfully try to live a "normal" life.
Everyday people are insensitive.
If I smile, wear make-up or dress up once a week and drive a nice car
people assume that nothing can be wrong with me (despite the atrophyed
limb and the inability to get around). Wearing a mask enables me to
function in the outside world. I have gotten used to smiling and thanking
people when they aproach me and say "You don't look like there
is anything wrong with you". They often misunderstand drive and
determination for normality. Unfortunately there is no such thing as
normal in this continous entrapment called "hell" that we
live in. Once active, I no longer take my health for granted.
Keep the faith!
An Unwelcome Visitor
by Donna Hatton
One year has gone by… my life as I knew it changed profoundly when I awoke from a nap unable to move my arm. Pain, unlike any I had ever experienced before screamed through my body like a freight train out of control. Tears flowed unchecked and I tiptoed through the house trying not to set off any vibrations that seemed to irritate the monster in my swollen and misshaped hand and arm.
For a week I tried living through the attack on my body and finally went to an emergency room only to be treated as a hysteric, with no history of serious injury, acting completely out of context to what? That was just the beginning of the trip to Hell that was eventually diagnosed as RSD.
I was not well informed even then as to what I had and as my journey has continued I have had to fight for respect, understanding and treatment. After five Stellate blocks and a round of medications that made me sick, didn't slow the progress and some physical therapy I have been on my own. I also thought I knew everything there was to know about pain as a migraine sufferer and diagnosed with MS, but nothing prepared me for RSD. I have no insurance and cannot afford any so I have worked on a program I designed for myself and with the support of my family continue to fight for my normalcy. I use what ever I can tolerate, pain is uniquely individual, I know my level of endurance and know if I don't take care of myself I will suffer greatly.
Some of the things I have found that work are funny, like the use of a haemorrhoid cream on my hands, legs and feet, for some reason it helps keep down the swelling. Cold or chill makes the pain climb so I dress in soft layers of clothing and I am careful of the fit. I gained weight because it hurts so much to move, but I hurt anyway so I have decided to keep doing the physical things I love the most, riding my horse being one of them!
I am a writer, western poet, songwriter, singer and artist. I could not sing for four months and that nearly killed me right there. Another decision, sing or let the RSD win another round, I sing and it hurts, but I can't tell you what it does when I finish a concert and know I have aced the music! Last year as I struggled to keep my sanity, I continued to perform in concerts and this year was voted by "The Academy of Western Artist" as one of their top five Lady Cowboy Poets. Some people ask about the thing that has happened to me and I tell them about RSD, the MS and Migraines, it is my heartfelt hope that I will help to bring more awareness to what RSD, MS, and Migraines are and their devastating effects on the lives of all that these chronic illnesses touch.
Keeping hope alive and sharing what others have achieved is a blessing and even sharing the difficult days means that we know we are not crazy and there is healing in tears.