Thursday, January 08, 2009
Here is my newest grand- daughter, Ellie Grace, joined with her brother Connor, who is 2 yrs old.
Ellie was 3 weeks early, but someone miscalculated, because she weighed 8 lbs and was 19 in long- fully developed. Her mom is my oldest child- 35 years and time to stop now before something would go wrong.
This is the latest technology news concerning changes in my brain.
I got this article in full off my RSD group, I belong too.
"Scientists peered at the brains of people with a baffling chronic pain condition and discovered something surprising. Their brains looked like an inept cable guy had changed the hookups, rewiring the areas related to emotion, pain perception and the temperature of their skin. The new finding by scientists at Northwestern University's Feinberg School of Medicine, begins to explain a mysterious condition that the medical community had doubted was real.
The people whose brains were examined have a chronic pain condition called complex region pain syndrome (CRPS.) It's a pernicious and nasty condition that usually begins with an injury causing significant damage to the hand or the foot. For the majority of people, the pain from the injury disappears once the limb is healed. But for 5 percent of the patients, the pain rages on long past the healing, sometimes for the rest of people's lives. About 200,00 people in the U.S. have this condition.
In a hand injury, for example, the pain may radiate from the initial injury site and spread to the whole arm or even the entire body. People also experience changes in skin color to blue or red as well as skin temperature (hotter at first, then becoming colder as the condition turns chronic.) Their immune system also shifts into overdrive, indicated by a hike in blood immune markers.
The changes in the brain take place in the network of tiny, white "cables" that dispatch messages between the neurons. This is called the brain's white matter. Several years ago, Northwestern researchers discovered chronic pain caused the regions in the brain that contain the neurons -- called gray matter because of it looks gray -- to atrophy.
This is the first study to link pain with changes in the brain's white matter. It will be published November 26 in the journal Neuron.
"This is the first evidence of brain abnormality in these patients," said A. Vania Apkarian, professor of physiology at the Feinberg School and principal investigator of the study. " People didn't believe these patients. This is the first proof that there is a biological underpinning for the condition. Scientists have been trying to understand this baffling condition for a long time."
Apkarian said people with CRPS suffer intensely and have a high rate of suicide. "Physicians don't know what to do," he said. "We don't have the tools to take care of them."
The new findings provide anatomical targets for scientists, who can now look for potential pharmaceutical treatments to help these patients, Apkarian said. He doesn't know yet if chronic pain causes these changes in the brain or if CRPS patients' brains have pre-existing abnormalities that predispose them to this condition.
In the new study, the brains of 22 subjects with CRPS and 22 normal subjects were examined with an anatomical MRI and a diffusion tensor MRI, which enabled scientists to view the white matter. In addition to changes in white matter, the CRPS patients' brains showed an atrophy of neurons or gray matter similar to what has been previously shown in other types of chronic pain patients.
Apkarian said the white matter changes in patients' brains is related to the duration and intensity of their pain and their anxiety. It is likely that white matter reorganizes in other chronic pain conditions as well, but that has not yet been studied, he noted.
Source: Northwestern University
Wow what new scientic research has found. It explains my emotional lows, anxiety, pain perceptions ( I read that as we take pain meds-, and our pain medication is absorbed about 20-30% of them are used in my body. It explains my lower immune system problems, and my suicidal thoughts. I cannot do household things like cooking, baking, cleaning, and typing with only 1 hand.
I sleep into the afternoon now
I am so down- that I am not participating in my fibro group, and I am disappointed how low in number of RSD people who participate. I know I have not lost any weight. I need prayers for healing - I have been praying continually for the RSD to leave. My RSD leg is 1 " atrophied more than the other. I am hot always when others are wearing sweaters. I was on the site itself where they demonstrated the short circuts in my brain- unfortunately when I had a brain injury in my old marriage- they did not know this stuff.
Well that's my update on my RSD/ CRPS.
Wednesday, September 24, 2008
Hello: I have really changed in weight in the last 9 months. Due to RSD pain, and taking neurontin, I have put on my 25 lbs , as a side effect to neurontin in having a " belly pad".
My Dr has told me I need to choose to get off medication ( that is holding my pain to a reasonable level) too loose this fatty belly pad, or stay on it, with reasonable weight loss issues. I choose to stay on Neurontin at this time, and have changed my ticker to reflect the 25 lbs I gained in the last 9 months With RSD- exercise is almost impossible.
So I will become active in charting my nutritional intake.
I also have chosen to return to some posting, as my sitting at computer is limited by my pain pills . I am having superior fogginess.
Above is my step daughter Valerie and her husband, Jerry who was injured in the army. after 6 months of rehabilitation, he is home now - progressing. praise God!
Tuesday, July 29, 2008
I am getting more questions of what is RSD? This may exlain more:
"This sort of explains RSD or also known as Chronic Regional Pain Syndrome:
"(For those of you who don't have RSD but suffer from any other form of chronic pain (CP) you could probably substitute your disease everywhere you see the letters RSD in this article and share it with your families as well)
Dear Loved Ones;
The other day a friend of mine asked me if I would share with her loved ones the experience of being an RSD patient; what we go through on a daily basis, the struggles we face, and the importance of medications and therapy in our lives. I thought the best way to do this was to share what a typical day in the life of an RSD patient was like.
I myself have had RSD since 1974, over thirty years now. I also have Degenerative Disc Disease, Failed Back Syndrome, Ulnar Nerve Entrapment, and Fibromyalgia so Chronic Pain (CP) and I are old friends. I first developed RSD when I was 14 years old. Over the last 30+ years I have talked to tens of thousands of RSD and other CP patients of all ages and we all experience pretty much the same things with some minor differences.
As an example for those who do care but are unsure what a typical day is for us, I will try to explain. Please don't take this letter as mean-spirited in any way. I know some of it may be hard to read, to actually see some of the words in print, but it is not an attack. Your loved ones just want their voices heard.
Over the years I have actually had people tell me, "Gee, it must be nice to not have to work and just sit home all day". If I thought they were really interested in a reply to that ridiculous statement I would tell them that having RSD and/or other CP Diseases, however severely you have it, is much more work than any full-time job! Plus, we don’t get to call in sick, get vacation days, and our work day is 24 hours long, 7 days a week!
Now understand that quite a few RSD patients (also known as RSDers) and CP patients have other diseases as well as RSD, such as Fibromyalgia, Spinal Stenosis etc., and that some RSDers have RSD in one limb while for others it is more. Some have less movement while others have quite a bit. Some take only a few medications and some take quite a lot.
I myself have taken over 20 pills a day(not different ones, but altogether). Contrary to some people's opinions taking a pile of medications does not make us ""druggies". A "druggie" is someone who takes drugs for recreation. A pain patient is someone who takes medication because he/she has no choice and who probably cannot fathom someone who takes narcotics for "fun and/or recreation“!
There are patients who use different types of machines, have Spinal Column Stimulators, or Pumps installed in their bodies in an attempt to reduce their pain. Some deal with the wheelchair issue as well. Most patients, the lucky ones at least, also do some form of physical therapy such as swimming, weights, or massage, to help them continue to be able to do the basics things like walking and using their hands, feet, and arms.
First, let‘s start with the sleep patterns, or lack-of-sleep patterns to be more accurate. Unlike "normal" people, CP patients are prone to insomnia and do not reach REM sleep; this is the healing sleep our bodies need each day. We either wake often or are in a drug induced sleep. When we do wake, it is often physically painful to actually get up and out of bed. So, why don't we sleep?
It is because RSD cause changes to the Limbic System of the brain. The limbic system is that part of the brain that controls insomnia, short-term memory, concentration, irritability, ability to find the right word when speaking, and much more.
(There is a special article on sleep and the problems RSDers have with it in this section) RSD AND SLEEP
We start our day with medications of course. The first of many such times per day. To "look fine" we take 10 to 30 or more pills a day for various symptoms. Then there are the side effects of those medications to deal with; upset stomach, drowsiness, diahhrea, constipation, headaches, and many others. Many of us also have to fight the "Dry-Eye Syndrome" and must use eye drops two or more times per day.
Understand that these pills do not take all of the pain away. They just enable us to get up, move around, and have some semblance of a "normal" life. They simply allow us to function.
Then many of us head to Physical Therapy such as pool exercise, range of motion therapy, massage therapy, and even acupuncture. For the patients for whom these things work, they are lifesavers. Like the medications they allow us to function, to be a part of our families, to enjoy part of each day, and for some they actually give us a reason to get up in the morning.
These aren't luxuries but necessities for those of us who can physically handle them. There can be month's, even years, when the allodynia is too high to do even these simple things. (Allodynia is when even the lightest touches or sounds cause extreme pain.) Maybe the person sitting next to you at dinner touches your RSD arm, or your foot gets accidentally kicked at the pew at Church, or your leg gets bumped into at school; all these things seem harmless to the average person and they may not understand how they could ever cause pain to an RSD patient, but trust me, they can and do. Some people can even have a slight breeze cause them excrutiating pain.
I know what you are thinking, “that is crazy”. No. That is RSD. If you think it’s crazy, and I am telling you from a knowledge background, think how a patient who knows nothing about the disease feels when they start forgetting things, especially when their pain is high? Or when the slightest touch, even the caress of a loved one, the kiss from a spouse, the touch of the sheet on the foot, the tightness of a sock, sometimes even the very breeze itself blowing over the body, can cause such pain to the patient it will bring tears to their eyes. Think of the confusion and terror that brings into their lives.
And when their friend and loved ones sit there, make fun of them and disbelieve them when they try to explain how it causes pain, well, that hurts them even more. When a disconnected Doctor doesn't believe you that is bad enough but when a loved one doesn't believe you it hurts almost as much as the pain. And let me set the record straight here on the pain, there is no pain like the pain of RSD/CRPS. That isn't just from a patient or an advocate, it is documented. RSD pain is ranked higher than any other form of chronic pain known today.
RSD is ranked on the McGill Pain Index as the MOST PAINFUL FORM OF CHRONIC PAIN THAT EXISTS TODAY!
To put that in perspective, you can visit a page we have on the website that shows some other diseases/conditions and their rankings.
McGILL PAIN INDEX
As you can see on the scale, Arthritis pain is ranked about a 18, Cancer pain a 24, Chronic Back Pain a 26, and then RSD/CRPS is ranked a whopping 42! The only thing close to RSD pain is the amputation of a finger and thankfully, that is quick, while RSD pain is 24 hours a day, 7 days a week with no let-up.
Does that bring it home to you?
It is a pain like no other. When people ask me to describe it to them the best I can do is say “Imagine you had RSD in your hand and arm. Empty the blood from your blood vessels in your hand and arm, then refill them with lighter fluid and light them on fire. Keep them lit 24 hours a day, 7 days a week.”
Let that sink in for a moment.
“Now imagine no else can see the flames or will believe that you are in pain no matter what you say”.
That is what RSD feels like.
Whether we patients are walking for therapy, which I assure you is as painful as it is necessary, or doing things that remind us we are alive there is always a price to pay in extra pain directly afterwards, or even the next day or week.
RSD patients are cognizant of that every day. While the average person can sit there and tell us "Go ahead and enjoy the day, you can't let your pain control your life!" What they don't realize is that we are controlling our pain and not the other way around. We control our pain by controlling what we do.
What do I mean by doing things to remind us we are alive? When we spend a few hours tending the garden, spending time with our children, playing with our pets, going to a movie, grocery shopping, running errands, attending a family gathering, or even just going to church. Things that make us feel normal, if only for a few hours.
Unfortunately some people who see you during these "good times" believe that is how you are the entire day. What they don‘t see is the pain you experienced that night and/or the next day because of what you did. Nor do they take into account all the medications you took before or afterwards to be able to do those things nor the fact that you probably had to spend a great deal more time resting afterwards.
The same is true for patients who go to the computer to get support from others with RSD through cyberpals, listservs or websites. Many non-patients do not understand that it is the time we spend there that keeps us going each day . It informs us of new procedures or medications and educates not only ourselves but also our loved ones and sometimes even our Doctors about how to cope/treat RSD.
For most of us it is our lifeline, not our toy. The time we spend on the computer is absolutely necessary to our general well-being for it is there that we can talk with others who truly understand what we deal with every day and every minute.
Many of us have to sneak in a nap in the afternoon to rest our bodies, especially those of us who also struggle with Fibromyalgia. One of the problems this leads to is when our loved ones try to do something nice for us and plan a whole days activities. It is just too much for us. You have to change your whole way of thinking to include doing things in moderation. For many RSD patients that means scheduling things in the morning when we are at our strongest and our pain is at its lowest.
For others, it is much easier to do something in the late morning or early afternoon but typically by early evening we are done for the day. You also have to factor in your physical therapy and Doctor appointments as sometimes these things will wear us out for the entire day.
Another strange symptom that has to be factored in to our daily lives is that many are bothered by vibrations or noise, and for a small percentage, it can actually make the pain skyrocket! A simple ride in the car over a bumpy road can cause a spike in pain.
Due to the noise and vibrations causing me extra pain for instance, there are a lot of things I cannot do, places I cannot go, and again, I am just one example of many out there. These are places most people take for granted and may wonder why we are not there. They may think we are shutting ourselves off by not going, places like my Church, my Masonic Meetings, going out with friends, etc.
If there are a lot of people making noise for example, even if it is simply singing or clapping, it can cause our pain to spike. Visits have to be cut short sometimes due to all the typical regular noise generated or we have to go off to another room. Don't even start on things like thunderstorms, whew!
Imagine saying to your boss, "Sir, I have to go home, the thunder is causing me great pain and the strong wind blowing is hurting me as well." Oh yeah, they would love that. Sorry I can't come to your birthday party because there will be too many people having fun and enjoying themselves and making noise. Yeah, that makes sense, especially to my 10 year old niece. I can only imagine the restrictions parents with kids have to place on their children so as not to hurt their RSD limbs, after all kids will be kids.
I was lucky when I was a teen with RSD because, despite many a day spent wearing dark glasses due to the pain of the bright sunlight or the days when the pain of my RSD made the ordinary things extremely difficult, my friends were always there. So many teens I talk to on our Teen Corner aren’t as lucky. They have schoolmates who take pleasure in pushing them in the hallway to see them fall on their bad leg, or purposefully hit their RSD arm.
Why, even their own siblings hurt them or taunt them about their RSD, as if it is something they have a choice in. Who would choose RSD? Do they think if we just decide to smile it will go away? It would even be a little more understandable if it were just the kids. Unfortunately it isn’t, as many of you personally know.
I have heard so many stories from our teens with RSD/CP whose siblings, Aunts, Uncles, even parents, who tell them they need to "Just get over it, deal with it, move on already". Great advice from the uneducated and seemingly uncaring. Instead of saying things like that, why not read up on the disease, go to the websites like ours, see what the truth is regarding using the limbs, talk with the Doctor about it if you really care that much about their well-being. You don’t know how much it would mean to the patient if you took just an hour here and there to do that. "
taken from www.rsdhope.org.
Tuesday, July 29, 2008
I hate to say this, but I am not doing well, with this RSD of my leg. In addition, my other knee is now bone on bone and the Drs all who treat me, say no further surgery, as they and I fear that that my other limb will be the start of RSD. The Dr has informed me since I need another knee replacement and 2 future hip replacements, that I would be better off wheelchair bound than hurting over with RSD. If it spreads to major organs it can be terminal. ______________________SO
I am taking a wheelchair to Cape Cod this Friday and do not look forward to it. It will be nice when we go to Martha's vineyard.
I am borrowing a friend's wheelchair and scooter at the moment- watch out with the pills I may run you over. I increased today my house insurance liability just for that reason.
I am extremely down about 2 friends deaths. One occurred a year ago, but I never grieved her loss she was like a sister to me. I called her former husband only to find out he already remarried and has a slow growing cancer himself. He went over with me ( he is a pastor and this is is 3rd wife- all to death) the details of my best friend's death which helped me to bring closure to the grief.
At same time a dear friend passed away at 62 this week and leaves behind 6 girls and a wife. He was my spiritual mentor teaching our small Bible study. For some reason the tears would not dry up,, and still flow easily.
I saw my psychiatrist to get extra help and got injections for that other knee and my sciatica. I feel false guilt for going on a lovely trip but being in a wheelchair for my safety is not what I bargained for ( My osteoporosis is extremely bad) I do not have anything that the rest of my friends over at Christians with Fibro or RSD have. I am blessed but the sorrow and depression do overwhelm me. The evil one is robbing me of joy through the deaths and circumstances. If you read this please pray for me, as I am on line less and less, unable to write what is wrong or good with me. Thanks
Wednesday, July 09, 2008
Hi girls :
I am back from Michigan. where we had horrible weather every day. It rained daily, it was in 60-70 degrees, and extremely humid. My RSD knee pained so much I couldn't walk at the end of the week. Since I arrived home, I got a wheelchair that I will take when we go to Cape cod first of August.
It was great to see all 11 grandchildren ( with it being 13 total in a few more months). I must say I am extremely proud of all my children, and the way they run their homes and discipline. That makes me feel great.
On Bob's side we presented the gospel to his son-in-law, who just got dismissed from REHAB center in Grand Rapids MI. He went through all the steps of accepting the free gift of the gospel , and his wife did earlier, through a conversation, I had with her by phone. They are very ripe to receive- but only time will tell if they bear fruit of any sort, to confirm it was genuine.
We went to the children's museum twice- once with my grandchildren and once with my hubby's. We went to the zoo too.
I encouraged my oldedest 16 year old granddaughter through a job interview, after I had convinced her parents ( my daughter ) to stick up to her adoptive DAD who always says no to every one and every request of hers. I had a deep talk also with my daughter about never telling her daughter she could not cry.
My oldest granddaughter and I went to her room and cried our eyes out, for the strictness of her adoptive father. We shared secret things and it was great bonding with her.
Currently- I am in extreme pain and need to take a higher dose of my neurontin . Sometimes I feel so drugged up. I will update my pictures when I can find them on the computer.
Please pray for me if you read this.
I am also posting this on the Christians with Fibro site.
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