RSD Outreach awareness

RSD and Overall Health Changes......Memphiscatwoman's Story

View previous topic View next topic Go down

continued....

Post  byrd45 on Tue Jan 06, 2009 1:30 am

Reply
Recommend Delete Message 1 of 7 in Discussion

From: memphiscatwoman2 (Original Message) Sent: 6/24/2006 3:04 AM
On September 19, 2005, I had a senior executive job, was a single mom to a teenager, was an avid tennis player, rollerblader, cyclist; and due to minor pain in my foot had a very minor, routine surgery to remove a Morton's neuroma. Had I known that this minor irritation that wasn't slowing me down would cause RSD, I would never have had the surgery. I didn't even know what RSD was, but I do now. I was very lucky to be diagnosed within a month of the surgery, and was promptly referred to a pain specialist who is very knowledgeable about RSD. The immediate diagnosis was severe RSD in my left foot - and despite prompt aggressive treatment with at least 20 sympathetic and lumbar nerve blocks,I developed significant dystrophy (claw foot) within a month of diagnosis. Doc also prescribed a month of daily 4 - 6 hours of PT, working with a psychologist for pain coping techniques. At the end of the month of treatment, in late December, I was able to put a little weight on my foot, and had progressed to a cane from crutches. The pain hadn't improved, but function had. I then was complying with additional PT on a reduced schedule, and one of the repetitive exercises REALLY hurt. I told the PT, she told me to work through it. Since then, I'm back on the crutches, although I can hobble a little on my heel only in my home. I lost my job, since I was never able to go back to work after the surgery. Luckily, my mom has helped me financially, as well as driving me to my appts., doing my grocery shopping with my food stamps, helping around the house, etc.. She has run out of money, my social security application is still "pending", and I'm losing my house. I already lost my car. I don't know where my daughter & I and my big dogs & cats are going to live, but the pain is so intense that I really can't even think about anything other than the pain. I guess that is a blessing!
In terms of RSD treatment, I'm already on a dose of Lyrica of 900 mg a day, fentanyl patch 75 mics/hour every 48 hrs, Marinol 15 g. a day (this one has helped add to the pain relief from the morphine), morphine 90 mg IR, lunesta 3 g for sleep, cymbalta 90 mg, and probably two others I can't recall. In February, 2006, my doc referred me out for a spinal cord stimulator implant. I had the trial surgery in March, which reduced the pain by about 25% (to a baseline 6 from an Cool during the 3 day trial. The night of the trial surgery I became nauseous from the antibiotic on an empty stomach, started vomiting which hurt horribly due to the wound on my back, was told to go to the ER when I called my doc. They injected me with phentermine & dilaudid for the pain, then my BP dropped through the floor, so they admitted me. I only stayed in the hosp. 24 hours that time. The rest of the trial was good. The doc scheduled the permanent implant surgery for 3/31, but after almost finishing the surgery, the anesthesiologist gave me Narcan (my surgeon yelled at him for doing it, but it was too late) and that apparently threw me into serious drug withdrawal & my entire body was spasming so badly that they aborted the surgery & stapled the wounds shut without the stimulator. The spasms had caused such tissue damage that another attempt wasn't scheduled for 8 weeks. The healing process was long &frustrating, and required a visit to a plastic surgeon to stitch everything shut again after 2 weeks. The long-anticipated implant surgery was done a few weeks ago. Despite several reprogramming attempts after a successful implant surgery, the SCS wasn't helping pain or function. At the two week mark, the wounds suddenly swelled a bunch and got very red. Went to the surgeon, and he said it was infected & had to come out the next day. It was a staph infection that kept me in the hospital for a week on IV antibiotics. I was so hoping that the SCS would help me get back to at least SOME function. It hurts terribly all the time, like everyone else, but hurts so much more when it's lower than my heart. So, I spend all of my time with my foot over the back of the couch & my rear firmly planted on the couch. Like so many others,in addition to not being able to take care of myself, I have severe memory loss, am fighting weight gain, have limited cognitive abilities, & lose words. Talking to people exhausts me,my hands shake a lot and I forget what I'm trying to write, so typing is exhausting,too. I nap a lot, and am blessed that I do fall asleep some during the day,since I have insomnia like so many of you. My foot is deformed, dark purple, and my daughter says she misses her old mom. My good pain days at this point are a 7, many are 8 --9. I've run through all of the treatment options, and I'm praying for a curative treatment. I've heard about the ketamine treatment, but it sounds just as iffy as all of the rest of them. May you all have better luck with treatmennts, and low pain days.

Susan



First Previous 2-7 of 7 Next Last Delete Replies

Reply
Recommend Delete Message 2 of 7 in Discussion

From: byrd45 Sent: 6/24/2006 10:40 AM
Hi Susan,
It is great to have you here with us! I am so sorry to read all that you have been through this past year or so. RSD seems to do that to all of us take our normal lives we had away and turn our lives upside down and inside out. I felt so sad when I read your daughter misses her old mom. My boys still miss the old me as I do frequently even though my RSD has been going on since 2001. I don't think I will ever stop missing that Robyn. She was great and active biking and playing ball with them and smiling all the time not in pain all the time. Well unfortuately I guess we have to make the best of the cards we are dealt. I don't understand why I am like this, but I figure if I have to be like this I am going to live the best I can. It is hard mostly everyday don't get me wrong. I get angry sometimes still and depressed too,but I used to wallow in the depression for the first two years and I won't allow that no more. You are under so much stress and that must be hell on your pain levels. I hope they okay your social security application so that will be one big stress behind you. I will keep you and your daughter in my prayers that it will happen soon and that you don't have to lose your house. I hope it comes through soon and keep pushing forward things will get better for you. Come in anytime and post and if you need me I am just a post or email away.
Love,
Robyn


Reply
Recommend Delete Message 3 of 7 in Discussion

From: memphiscatwoman2 Sent: 6/24/2006 4:07 PM
Robyn,

Thanks so much for your kind response. It sounds like you and I shared similarly active, fun-filled lives before RSD. I'm sure you spent time then, too, helping others as I did. It's hard to be on the receiving end of things, as well as hard to fathom why we cannot continue to be productive members of society as we were before.
I have read much of your story, and I have to say that I am very impressed with all of your work maintaining this site. You have helped me tremendously in dealing with my "new life" by sharing all of this information here, and maintaining a forum for all of us. Thank you so much for doing this! I know it can't be easy, as it would be impossible for me to do, but it is a real gift to all of us. I look forward to getting to know all of these special people here.

Warm regards & minimal pain days,

Susan


Reply
Recommend Delete Message 4 of 7 in Discussion

From: suzy1230 Sent: 7/18/2006 3:21 PM
Hello, My name is Susan too, I dont get online much so I hope by this time that you are feeling much better. I have had RSD since 1993. There are a lot of things that happened before 2004, but thats when I had exhausted all treatment options for heal spurs and there was nothing else to do but have the largest one removed, I lost about 2/3 of my heel, left foot, unfortunately I had a cast on for 6 weeks that I begged to have removed but it didnt happen, when it was removed it was an open would uzing puss and I could see the bone, or what was left of it and was sickened at the sight, I had to have a skin graph but it didnt work, I then had to fight osteomylitis for 17 days of hospital iv and pain that was so bad that all I could do was moan out for help, I couldnt think straight and sisnt have anyone that understood what was going on, there are so many things that happened I could type forever but I get too tired! I am alergic to many many antibiotics and pain meds, morphine, dalodid?, now I have to use fentinol? I am terrified of getting hurt. I also had to have back surgery, thats another story, I know this is doesnt sound helpful but I can relate to you well and I want you to know that I have found that you just have to keep goin and try to use your foot as much as possible asap, it hurts horribly, pray pray pray, find that strength deep inside that still wants to return as close as possible to getting your life back. Water therapy helped me so much because of its weightlessness, regular therapy only agrivated it and did more harm! I know you can do it believe its possible! Hope to hear good news about you quickly! Susan


Reply
Recommend Delete Message 5 of 7 in Discussion

From: RSDMINDY Sent: 7/19/2006 3:04 AM
hi so sorry to here your pain. it really took you down fast. I want you to know you can save your home. the goverment has grants (DO NOT HAVE TO PAY BACK SEE BOTTON OF NOTE FOR MONEY) to help us get out a bind. you can use your hands go to gov granTs try hudus keep looking it's out there and it will help get the focus off the bad stuff. i lost the use of hands and now right foot is goingi typewith 1 finger. lotsa type-o. remember THIS TO SHALL PASS!!! EVERYTHING CHANGES ALL THE TIME. PLEASE KNOW I UNDERSTAND THE PAIN KEEPS ME FROM BEING ABLE TO FOCUS OR FUNCTION. I WAKE UP PARALIZED FROM PAIN THOSE ARE THE WORST DAYS. I'M ALL ALONE AND MY FAMILY THINKS IT'S FOR ATTENTION NOT REAL AND I'M LAZY. GOD BLESS YOUR MOM!!! I HOPE I DO NOT SOUND SHORT I HAVE TO KEEP TYPING SHORT CAUSE OF PAIN. I LIVE IN A ONE ROOM APT NOW CAUSE I HAVE GONE THROUGH EVERYTHING I HAD ID GONE BUT MY CAR IT'S OLD AND I USE T TO GET TO dR MOSTLY. I AM APPLYING FOT SEVERAL GRANTS FOR EVERYTHING UNDER THE SUN I CAN FIND RIGHT NOW. YOU CAN GET AS MANY A YOU QUILIFY FOR. I GOT APPROVED FOR ONE OVER NIGHT I HAVE TO CALL THEM BACK TOMARROW CAUSE I CANT REMEMBER WHITCH ONE IT IS BUT IT IS A MINIMUM OF 5 THOUSAND DOLLARS JUST FOR A NIGHT OF PAIN I COULD NOT SLEEP SO I APPLIED FOR GRANTS OVER THE NET. IT'S THROUGH "CAPITAL GRANTS" GOOD LUCK AND GOD BLESS

RSDMINDY


Reply
Recommend Delete Message 6 of 7 in Discussion

From: Pacridge Sent: 7/27/2006 1:27 PM
Sorry to hear about your situation. Glad you found this site. In a lot of ways your story and mine are very similar. I too was very active prior to what I now refer to as “the incident.” I’ve struggled with RSD a little longer then you. I injured my foot in 2001. I’ve gone through some fairly trying times since then. Physically, mentally, financially, emotional. The simple fact is RSD effects all aspects of your (our) life. At times I wondered if the medications are worse then the RSD. I too have had the displeasure of withdrawals. I also had the terror of an unintentional OD one night. My Fentynel patch broke open and the gel came into direct contact with my skin. The fact I woke up still amazes me. Your med lists looks like a mirror image of mine. Right down to the Marinol, which I found did little more then make me gain weight. In fact other then your note of napping ( I find I get little or no sleep..ever) and the fact you’re newer to this, we sound like matched case studies.

My advice, for what it worth, keep fighting…never give up. Things do get better. The longer I’ve had this the more I’ve been able to get into a rhythm, sort of a system that works for me. Changing my diet, most recently, has seemed to really improve my overall well being. Will that work for you? For anyone else? I have no idea. But keep trying new methods hopefully you (I almost certain you will) find something that reduces your pain. Medications need not be the only focus of your search.

Your financial situation, of course, is a concern. I nearly lost everything. I had a good paying job in Law Enforcement, was a Parole Officer for 16 years. When I first got hurt I had sick leave which was fine, great even. Didn’t realize how great…until it ran out. I kept thinking this will get better, one of these nerve blocks is going to take and I’ll be back up and running at full steam in no time. Well that didn’t happen. After the sick leave and vacation time ran out so did my income. I filed for SS and applied for disability retirement from my employer. SS, of course, turned me down (several times). Since my injury happened off the job so did my retirement fund. Two attorneys and three years later I now have both. I don’t make what I used to, about 66%, but after of several years of living lean the bills are once again getting paid. Suddenly 66% seems like a small fortune. So I’m even able to put some away each month.

So here too my advice, for what it’s worth, keep fighting. SS acknowledges RSD as a legitimate disability. Keep filing, keep all your med records you’ll prevail at some point. I’m lucky in that my retirement fund has an off the job disability clause (though getting them to adhere to it was no small feat). Your situation may not include such. But you may find you’re able to regain some income through the courts. Where did this happen? Contact an attorney. All you have to loose is time. If you are indeed like me time is the one thing you have plenty of.

Good luck,

Pac



Reply
Recommend Delete Message 7 of 7 in Discussion

From: byrd45 Sent: 8/4/2006 12:22 PM
Hi Susan,
I am so sorry I didn't see this before now! Thank you so much! What a nice thing to say and it meant alot to me when I read it today! I've found that there are many ways to be useful and enjoy pushing the envelope a bit. This disease makes you feel like you are not useful anymore I know I have felt that way before but it just isn't true. We are all still special in our own ways and even RSD can't take that away from us.
Love,
Robyn
avatar
byrd45
Admin

Posts : 1014
Points : 343
Reputation : 0
Join date : 2008-10-29
Age : 53
Location : PA

http://rsdoutreach.4rumer.net

Back to top Go down

Memphiscatwoman's story continued.......

Post  byrd45 on Sat Nov 01, 2008 9:22 am

Reply
Recommend Delete Message 5 of 10 in Discussion

From: 1memphiscatwoman Sent: 5/10/2007 8:43 PM
Dianne, yes, I am on Topamax, 100 mg a day. I'll ask my dr. about it. I'd never had a problem with liver values, despite 16 mx on the pharmacy cocktail, until immediately after I had the gallbladder surgery, so I don't know whether that's coincidence or causation for me. Thanks so much for the reply.

I hope you are having a low pain day. Gentle hugs to you.

Susan


Reply
Recommend Delete Message 6 of 10 in Discussion

From: 1memphiscatwoman Sent: 5/10/2007 9:01 PM
Hey. Robyn. Wow, I didn't know it could get into your chest like that. That's so scary about your heart, too. Since my pnuemonia (sp?) hasn't cleared like it should, now I'm being sent to a pulmonologist tomorrow, and my internist has already talked with them about doing a bronchoschopy (sp?). I hope it doesn't turn out to be RSD in my lungs, if that could be.

Thanks for the suggestions on the yogurt. I'm a fan of it, too. Here's hoping you stay bored. Have a happy Mother's day.

Susan


Reply
Recommend Delete Message 7 of 10 in Discussion

From: 1memphiscatwoman Sent: 5/10/2007 9:12 PM
Oh, Liz, I'm so sorry to hear you've been having such an awful time. It's bad enough just to have the disease, but then to have to fight for benefits when you don't feel up to it is just adding insult to injury. Of course you haven't made any of it up. Any decent doctor should have known that there was something organically wrong, and should have known what it was. RSD is rare, but not THAT rare. What boneheads.

I hope you have better days. I hope we ALL have better days.

Gentle hugs to you as well.

Susan


Reply
Recommend Delete Message 8 of 10 in Discussion

From: byrd45 Sent: 5/14/2007 4:36 PM
Hi Susan,
Sorry if I scared you I didn't mean to but it can go into the organs
sometimes not always it depends on the person and how far it has spread. I
will keep my fingers crossed that it hasn't gone in your lungs either! It
could have affected your ability to fight off infection that can happen with
RSD too which could be why you got so ill. Hang in there because there are
ways to build your body back up again so you won't get sick a lot like that.
A good suggestion but please check with your doctor first is they have
vitamins that specifically boost the immune system. My pain management
doctor recommended them to me to keep me from catching everything that comes
my way. They are over the counter and I found them at Walmart for a
reasonable price compared to other places. They are well worth the price
they cost though because they really helped me to get back on track.
Love,
Robyn


----- Original Message -----
From: "RSD Outreach" <RSDOutreach@groups.msn.com>
To: "RSD Outreach" <RSDOutreach@groups.msn.com>
Sent: Thursday, May 10, 2007 9:01 PM
Subject: Re: RSD and overall health changes


-----------------------------------------------------------

New Message on RSD Outreach

-----------------------------------------------------------
From: 1memphiscatwoman
Message 6 in Discussion

Hey. Robyn. Wow, I didn't know it could get into your chest like that.
That's so scary about your heart, too. Since my pnuemonia (sp?) hasn't
cleared like it should, now I'm being sent to a pulmonologist tomorrow, and
my internist has already talked with them about doing a bronchoschopy (sp?).
I hope it doesn't turn out to be RSD in my lungs, if that could be.
Thanks for the suggestions on the yogurt. I'm a fan of it, too. Here's
hoping you stay bored. Have a happy Mother's day. Susan

-----------------------------------------------------------

To stop getting this e-mail, or change how often it arrives, go to your
E-mail Settings.
http://groups.msn.com/RSDOutreach/_emailsettings.msnw

Need help? If you've forgotten your password, please go to Passport Member
Services.
http://groups.msn.com/_passportredir.msnw?ppmprop=help

For other questions or feedback, go to our Contact Us page.
http://groups.msn.com/contact

If you do not want to receive future e-mail from this MSN group, or if you
received this message by mistake, please click the "Remove" link below. On
the pre-addressed e-mail message that opens, simply click "Send". Your
e-mail address will be deleted from this group's mailing list.
mailto:RSDOutreach-remove@groups.msn.com




Reply
Recommend Delete Message 9 of 10 in Discussion

From: shellie Sent: 5/14/2007 5:16 PM
Robyn..... you forgot to say what they are called. I take centrum silver because it has more calcium than most vitamins.



--------------------------------------------------------------------------------
Pinpoint customers who are looking for what you sell.


Reply
Recommend Delete Message 10 of 10 in Discussion

From: byrd45 Sent: 5/24/2007 8:58 AM
Hi Shellie,
They are called Coenzyme Q-10 and I found them at Walmart under the Spring Valley brand name.
Love,
Robyn
avatar
byrd45
Admin

Posts : 1014
Points : 343
Reputation : 0
Join date : 2008-10-29
Age : 53
Location : PA

http://rsdoutreach.4rumer.net

Back to top Go down

RSD and Overall Health Changes......Memphiscatwoman's Story

Post  byrd45 on Sat Nov 01, 2008 9:20 am

Prev Discussion Next Discussion Delete

Reply
Recommend Delete Message 1 of 10 in Discussion

From: 1memphiscatwoman (Original Message) Sent: 5/2/2007 12:59 AM
When I initially joined the group well over a year ago, I posted my story, but so much more has happened that I'd really like some feedback from y'all on, so I'm posting again. My RSD dates to September, 2005, when I had a minor foot surgery (removal of a Morton's neuroma) and my doc theorizes that a nerve to my big toe was clipped & triggered the RSD. The surgeon shouldn't have been near the big toe, but that's another story. Witin two weeks, the classic unbelievable burning, electrical, shocking, shooting,aching,stabbing, throbbing, etc., etc., pain and purple/blue shiny color made it clear that my foot was not just slow to heal from the surgery. I was very fortunate and was diagnosed within 3 weeks, referred to a pain doc who really knows RSD within 4 weeks. I've been through it all - intensive physical therapy, three times weekly nerve blocks on sympathetic and cyatic (sp??) with nesacane IV, pharmacy cocktail of ten drugs including 900 mg Lyrica, duragesic patch, oral morphine, Actiq for breakthrough, marinol, topical gabapentin & lidocaine ointment, Lidocaine patches, Botox injected into the foot, and a host of other things. I've even tried acupuncture. I did have a spinal cord stimulator implanted, and it was working, but I got a staph infection & it had to be removed. The end result is that I have to keep my foot elevated all the time or I cannot control the pain even with my pharmacy. My foot and leg hold me hostage, the electrical shocks and other pain now reach my hip. I can't tolerate the vibration of a car, so I don't go anywhere unless I have to (hospital & doctors only). I was fortunate enough, because my case is one that any idiot can see, to have my social security disability approved the first time I applied, although they did have some delays in paying me due to some spot audit mess when I was about to end up homeless with my 15 year old daughter. At this point, the RSD seems to be stable. It's not getting better, but it's not getting worse, either. Here's what I'd like to hear from some of y'all on. Before the RSD hit, I was an extremely active, fit, 41 year old woman with zero health problems (okay I did have an ulcer, but that's it).

The day after Christmas, I became very nauseous & vomited several times. This has continued to the present day - yes, every day! Within the last four months, my gallbladder ceased working, no stones, no nothing, just was not emitting the bile into the stomach anymore, and was actually pushing the bile back into my liver. So, in February, they removed the gallbladder. All seemed okay, other than I continued to have the constant nausea and many times daily vomiting that had caused them to find the gallbladder problem. Two weeks after the gallbladder surgery, my bloodwork showed that I was malnourished & my liver values were significantly elevated. So, they put me in the hospital & did tests. They found out that my stomach had pretty much stopped doing its job, too - and doesn't empty like it should. It now emptlies only 12%. So I now have a liver that is not working as it should, a stomach that has all but quit working, a gallbladder that's gone because it quit working, and the docs don't have a clue why. They're thinking that other organs could follow suit. Then, the first of April, while still dealing with this nausea, vomiting, pain in my right side near my liver, the RSD, I coughed a couple of times & it was immediately a bronchitic cough. When I went to the doc the next day for a previously scheduled appointment, I told him about my suspected bronchitis of all of a day, he listens to me breathe, and tells me that I have pneumonia. I ended up sick enough despite several rounds of antibiotics to have to be hospitalized for almost a week and today, May 1, I am still sick with pneumonia. Bottom line is, my health has absolutely TANKED since I got RSD. I'm now 43, and at this rate, I'll be lucky to make 45. Has anyone else experienced numerous unrelated health problems as soon as you got RSD? This is just so bizarre. And, yes, I am still taking phenergan all the time to keep food & liquids down....Thanks for taking the time to read my depressing saga!



First Previous 2-10 of 10 Next Last Delete Replies

Reply
Recommend Delete Message 2 of 10 in Discussion

From: dialuvsjeeps1 Sent: 5/2/2007 7:42 AM
Hi,
Are you on topomax right now??? I had been on it for 3 years, and then all of a sudden it started making me violentley sick. Just a suggestion. Now I am on a much lower dose of it and it is more reasonable. Dianne
ps many of the drugs mess with our liver values, mine is checked every 3 months and always has been


Reply
Recommend Delete Message 3 of 10 in Discussion

From: byrd45 Sent: 5/2/2007 8:55 AM
Hi Memphiscatwoman,
I have to say that I have noticed the change and downward spiral with health
problems since the onset of my RSD. It has caused the nerves to become so
inflamed in my chest that it shoots my blood pressure up and the only way to
control that is with blood pressure medicine twice a day even though I don't
have the traditional hypertension like most people get. The result is the
same so they treat it the same and if we hadn't found out when we did the
cardiologist said that my heart being squeezed like that much longer would
have led to a permanent problem of an enlarged heart. I got real lucky on
that one! Then the whole business with my veins being bad and the blood
clots and I almost died from that which was real scary. I know exactly what
you mean when you say your health has gone downhill! All I had before RSD
was acid reflux and a hormone imbalance. I don't know why RSD has a way of
making everything worse but it can. The best thing you can do is take care
of yourself the best you can. Yogurt has helped my stomach problems a lot
from RSD since it spread into my stomach. There is a culture in it that
naturally aids in digestion and now I eat one everyday and do feel better
for it. I would try it if you can eat yogurt it can't hurt and might help a
little at least. They also have the yogurt drinks which work well too and if
you want a tasty treat blend some fresh strawberries or peaches or frozen
with either the yogurt or the drink. The frozen makes it like a fruit
smoothie. It just seems like our bodies are fighting against us all the way
and I used to feel like that all the time. Anyway, hopefully that nasty
pneumonia will be it for a long time. Like I always say I've had enough
excitement for now (meaning my health) I could use a little boredom. I'll be
hoping you are very, very, bored lol. Feel better soon!
Love,
Robyn


----- Original Message -----
From: "RSD Outreach" <RSDOutreach@groups.msn.com>
To: "RSD Outreach" <RSDOutreach@groups.msn.com>
Sent: Wednesday, May 02, 2007 12:59 AM
Subject: RSD and overall health changes


-----------------------------------------------------------

New Message on RSD Outreach

-----------------------------------------------------------
From: 1memphiscatwoman
Message 1 in Discussion

When I initially joined the group well over a year ago, I posted my story,
but so much more has happened that I'd really like some feedback from y'all
on, so I'm posting again. My RSD dates to September, 2005, when I had a
minor foot surgery (removal of a Morton's neuroma) and my doc theorizes that
a nerve to my big toe was clipped & triggered the RSD. The surgeon
shouldn't have been near the big toe, but that's another story. Witin two
weeks, the classic unbelievable burning, electrical, shocking,
shooting,aching,stabbing, throbbing, etc., etc., pain and purple/blue shiny
color made it clear that my foot was not just slow to heal from the surgery.
I was very fortunate and was diagnosed within 3 weeks, referred to a pain
doc who really knows RSD within 4 weeks. I've been through it all -
intensive physical therapy, three times weekly nerve blocks on sympathetic
and cyatic (sp??) with nesacane IV, pharmacy cocktail of ten drugs including
900 mg Lyrica, duragesic patch, oral morphine, Actiq for breakthrough,
marinol, topical gabapentin & lidocaine ointment, Lidocaine patches, Botox
injected into the foot, and a host of other things. I've even tried
acupuncture. I did have a spinal cord stimulator implanted, and it was
working, but I got a staph infection & it had to be removed. The end result
is that I have to keep my foot elevated all the time or I cannot control the
pain even with my pharmacy. My foot and leg hold me hostage, the electrical
shocks and other pain now reach my hip. I can't tolerate the vibration of a
car, so I don't go anywhere unless I have to (hospital & doctors only). I
was fortunate enough, because my case is one that any idiot can see, to have
my social security disability approved the first time I applied, although
they did have some delays in paying me due to some spot audit mess when I
was about to end up homeless with my 15 year old daughter. At this point,
the RSD seems to be stable. It's not getting better, but it's not getting
worse, either. Here's what I'd like to hear from some of y'all on. Before
the RSD hit, I was an extremely active, fit, 41 year old woman with zero
health problems (okay I did have an ulcer, but that's it). The day after
Christmas, I became very nauseous & vomited several times. This has
continued to the present day - yes, every day! Within the last four months,
my gallbladder ceased working, no stones, no nothing, just was not emitting
the bile into the stomach anymore, and was actually pushing the bile back
into my liver. So, in February, they removed the gallbladder. All seemed
okay, other than I continued to have the constant nausea and many times
daily vomiting that had caused them to find the gallbladder problem. Two
weeks after the gallbladder surgery, my bloodwork showed that I was
malnourished & my liver values were significantly elevated. So, they put me
in the hospital & did tests. They found out that my stomach had pretty much
stopped doing its job, too - and doesn't empty like it should. It now
emptlies only 12%. So I now have a liver that is not working as it should, a
stomach that has all but quit working, a gallbladder that's gone because it
quit working, and the docs don't have a clue why. They're thinking that
other organs could follow suit. Then, the first of April, while still
dealing with this nausea, vomiting, pain in my right side near my liver, the
RSD, I coughed a couple of times & it was immediately a bronchitic cough.
When I went to the doc the next day for a previously scheduled appointment,
I told him about my suspected bronchitis of all of a day, he listens to me
breathe, and tells me that I have pneumonia. I ended up sick enough despite
several rounds of antibiotics to have to be hospitalized for almost a week
and today, May 1, I am still sick with pneumonia. Bottom line is, my health
has absolutely TANKED since I got RSD. I'm now 43, and at this rate, I'll
be lucky to make 45. Has anyone else experienced numerous unrelated health
problems as soon as you got RSD? This is just so bizarre. And, yes, I am
still taking phenergan all the time to keep food & liquids down....Thanks
for taking the time to read my depressing saga!

-----------------------------------------------------------

To stop getting this e-mail, or change how often it arrives, go to your
E-mail Settings.
http://groups.msn.com/RSDOutreach/_emailsettings.msnw

Need help? If you've forgotten your password, please go to Passport Member
Services.
http://groups.msn.com/_passportredir.msnw?ppmprop=help

For other questions or feedback, go to our Contact Us page.
http://groups.msn.com/contact

If you do not want to receive future e-mail from this MSN group, or if you
received this message by mistake, please click the "Remove" link below. On
the pre-addressed e-mail message that opens, simply click "Send". Your
e-mail address will be deleted from this group's mailing list.
mailto:RSDOutreach-remove@groups.msn.com




Reply
Recommend Delete Message 4 of 10 in Discussion

From: Liz3079 Sent: 5/7/2007 10:17 AM
Hi Memphiscatwoman

I am about the same as you ,before the rsd I was very very active,worked lots of overtime,had all kinds of energy and at 54 I was more like a 30 year old.I never got colds,never had any kind of health problem whatsoever.

Since the rsd I am very very fatigued all the time,not motivated to do much of anything and if I do I have to lay down. I hurt so bad when I use my arm and even if I dont use it there is always pain and I think that wears me out a lot.In the winter I catch colds one right after the other,I cant remember anything and before this my mind was sharp as a tack.I cannot stand cold on my arm,I cannot stand drops of rain to hit it or drops of water from the shower as it feels like burning needles .And none of this is all in my mind. WHen you talk about the burning fire to people and how cold your hand is and thats why you like to keep it covered with a glove they look at you like a basket case. My rsd has gotten considerable worse .It will be 3 years in July and what is so darn sad is my lawyer just told me in December of 2006 that workers comp hadnt been taking me seriously .They have let me go to drs but no one wanted to help much.They acted like I was fakiing everything. Now that my arm is even more crippled up and my hand is wasting away and they see Im losing more use of it they are starting to take me seriously.The way I see it they should have believed me in the first place about 3 years ago when I complained about so much pain .Kinda late now and the rsd is spreading like wildfire it seems.At one point about 2 asnd a half years ago when I was still in pain ,could not put any kind of pressure on my wrist to lift as the pain was unbearable the dr. against my wishes took me off all restrictions and told me I would hurt for awhile anyhow trying to do full duties at work.He told me to come back in 6 months if I was still hurting. Thats when I got a lawyer,I about lost my job and it was about 3 months before I got in to see a nother dr that the lawyer sent me to.He put me back on restrictions immediately but I guess workers comp still thought I was making stuff up. Isnt that so sad they would not believe me. The last dr I seen said my arm was a mess. I guess so.I am very bitter over how they treated me. I am a very very honest and decent person. I would never lie and make something up to try to get money . But now my hand is all shiny and shriveling up i guess they see they should have been listening to me.Well,Ive went on and on ,but Im just upset over what Ive been through the past 3 years with this.

I really dont understand how rsd could cause us all these problems but it sure does and it affects people in so many ways. We just gotta make the best of each day no matter how hard it is. At least here we all have each other and everyone here is caring and understanding. I think all drs. should be educated about rsd. Maybe it could be caught sooner and people wouldnt have to suffer so much.

Love and gentle hugs
Liz


Last edited by byrd45 on Sat Nov 01, 2008 9:34 am; edited 1 time in total (Reason for editing : title changed)
avatar
byrd45
Admin

Posts : 1014
Points : 343
Reputation : 0
Join date : 2008-10-29
Age : 53
Location : PA

http://rsdoutreach.4rumer.net

Back to top Go down

Re: RSD and Overall Health Changes......Memphiscatwoman's Story

Post  Sponsored content


Sponsored content


Back to top Go down

View previous topic View next topic Back to top

- Similar topics

 
Permissions in this forum:
You cannot reply to topics in this forum