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personal stories and notes from our correspondents
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Jennifer - USA
I was first diagnosed with Cumulative Trauma Syndrome back in 1994.
Then the swelling and pain included spasms. I went to over 15 Dr's before
I was finally diagnosed with RSD. The past years have been nothing short
of hell. My 10-year-old son has learned that mommy cannot do everything.
I went through Stellate Ganglion Nerve blocks, numerous medications
for pain and depression along with physical therapy. I literally lost
the use of my right arm. I have learned to compensate with my left arm,
and can even through a decent pitch to my boy. I have learned that pain
is a part of my daily life and I just have to live with it. But I have
also refused to remain incomplete as a person. I now have injuries to
both my hands and am scared to death the RSD has spread. Once again
I am in PT and seeing a Physiatrist. Who thinks RSD is a "garbage
diagnosis".
Although I do not show all the symptoms all the time, I know what it
feels like. And it angers me these doctors with all this education decide
what is and what is not real. I have been told by Dr's the best thing
to do is to work through the pain. Apparently they do not realize what
pain truly is and how debilitating it can be. I have stopped all medications
and any invasive treatments, save PT. The results remain to be seen.
The worst thing about having RSD is the way people treat you. Most look
at you with a kind of pity and say they understand, and if there is
anything they can do to help, yet they are never there when help is
needed. There are those who invade your life completely as though you
are an invalid, and still there are those who think this is for attention.
There are a rare few who do what they can. Those are the people at the
grocery store who hold the door or pick something up I have yet again
dropped. RSD may or may not be a garbage diagnosis, or something psychosomatic,
but it is real. And I can only do my best to continue to live my life,
and learn what the truly precious things are, and appreciate them that
much more. I would give almost anything to have a moment where there
is no pain. And one day, perhaps some miracle will occur and I will
have that.
EDITOR'S COMMENT -You can be sure that
RSD is not psychosomatic. There is scientific evidence that the root
of the condition is in the brain; but that is not the same as the ignorant
retort, "it's in your head". A headache is in your head, but
nobody disputes that it is real!
Vicki
I am hoping by posting my story someone may recommend doctors or information
on treatment for my back pain. I am 36 and I had my 4th back surgery
May 13, 2004. I have suffered for 3 years with chronic back pain and
depression and I have lost hope today. I have seen several doctors and
they all say that I will be in pain for the rest of my life. In April
2002 I had a C4-C5 fusion that failed and was followed by a posterior
fusion at C4-C5 with plates and screws on 12/20/2002. I received medication
like neurotin, ultracet, hydrocodone, Demerol, and every other pain
med. In 2003 my lower back developed a new problem and I had surgery
on 8/13/2003 for a left side laminectiomy, which failed and I had the
L4-L5 fusion with screws and plate and revision right/left side laminectomy
on 5/13/2004. Since then I've received several nerve block injection,
several trigger point injection, physical therapy and nothing really
helps me. Today I saw a anesthesiology doctor who suggested a procedure
for my neck but said he could not do anything for my lower back because
the screws in my spine were place in a area that is too dangerous to
enter. Now I am back to the starting point again and it's upsetting
because for the last 3 years the only thing I can remember is everyday
I opened my eyes I am in severe pain.
please reply...
vicoles@yahoo.com
Bob - Illinois, USA
I was originally diagnosed with RSD in 1991 after an injury in Saudi
Arabia, (Gulf War I). The injury ocurred in February of 1991. I went
into remission in May-June of 1992. After being in remission for a little
over 10 years, I injured myself at work on March 8, 2003. The injury
was to my back and it sent a shocking pain down my left leg. At first
I thought 'no big deal, but then my back tightened up and I felt like
if I tried to lift anything else I would break my back. I went to the
emergency room and they did X-rays which were negative. I went to a
chiropractic physician the following week and he began to treat me for
possible muscle strain or sciatica. Nothing helped, the pain in my back
and left leg was excrutiating. Having experienced RSD once before I
knew what was happening immediately. About 8-10 days into the injury
I was on crutches and had develped RSD once again. It felt like nails
or pins and needles going into my foot when I tried to weight-bear.
I had temperature change, swelling, and color change. My left foot was
at times purple other times bright red. It would go from purple (colder
than normal) to red (hotter than normal) in a matter of minutes. Soon
the spasms began and I would get sweating spells that would come out
of nowhere. I was sent to a pain management doctor and he gave me a
lumbar sympathetic block and told me to get rid of the crutches. Easier
said than done. I went back to him the following week wearing a sock
and flip flop but still on crutches. He was impressed and didn't suggest
another block. On the first visit I couldn't even stand a sock on my
foot. It was still painful but through drug therapy high dosages of
Neurontin and Vicodin I began to walk again. I still had burning pain
around the lower left side of my back and down my left leg. The signs
and symptoms would come and go, but were more severe at night. My back
was killing me and I had difficulty walking. I had an MRI which was
negative and after undergoing physical therapy and TENS treatment the
pain doctor put me at MMI and released me to full duty. He was under
the impression that I didn't want to work. My job was merchandising
for an Anheuser Bush Distributor. Basically throwing cases of beer around
for 8 to 10 hours a day. He said he didn't care what I did there was
nothing wrong with me. Anyway, I went back to work on September 27,
2004 and after doing light duty, mopping sweeping, cleaning, etc. I
had an increase in symptoms. I went to the emergency room on the 29th
and again on the 2nd of October. The first time for pain in my back
and left leg. The second time because I was concerned that I had possibly
develped a blood clot and I was not getting any pain relief from the
Tramadol. The doppler study was negative, and this 90 year old ER Doc
had no idea what I was talking about. He offered Motrin and sent me
on my way. For the past 6-7 weeks the pain has been between 8 and 10
and I am unable to walk without crutches. I've had three nerve blocks
and they have not helped at all. My wife and I are terrified that this
time it may be a lengthy ordeal. I am currently taking Oxycodone, Methadone,
and Nortriptylene. I have 3 kids and have been trying to avoid depression
but it is getting more difficult with every day that passes. Only those
that have had experience with this can understand the searing pain that
is associated with this syndrome. It is as if your effected limb is
in a fire-pit. For all those afflicted with this syndrome from hell...
keep the faith and hopefully someday there will be a cure. We are doing
good not to lose our sanity.
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