[Guysgal]

Hi there,
I have been suffering with RSD for the past nine months. It started in my right leg and has since spread to both my feet, left shin and left arm. I believe the emergence in my left arm was due to the three separate blood tests and bone scan dye injection. I am wondering about some of the symptoms I have been experiencing. I am on no medication whatsoever as I have many drug allergies. The symptoms I experience are: 1. extreme fatigue daily wherein my body just wants to shut down and sleep frequently. I do give in once or twice a day and take naps. 2. Head rushes and dizzyness to the point of fainting twice. One near fainting spell happened when I was swimming. I am an avid swimmer and was only in the water for about 5 minutes when I began to have trouble breathing and developed spots in my vision and a exteme dizzyness (low blood pressure and low pulse at these times). 3. Body aches as if I have been beaten with a baseball bat from head to toe. 4. Lack of appetite often resulting in forcing myself to eat. 5. Diarrhea almost daily. 6. Grey looking legs and feet (It looks like my skin tuns a rather darkish grey). This occurs regularly and is always present in the evenings after a day where I have had physio in the pool or done some gardening. I find it helpful to move through the pain. I change position, get up and walk around, swim or putter in my garden. It hurts but it also helps. 7. Sensitivity to loud noises and overstimulation and easy to tears. I also have all the other wonderful common symptoms of RSD/CRPS such as constant burning pain as if someone is injecting acid into my veins of the affected areas, freezing cold foot that aches like I'm standing on ice with bare feet, shooting lightening bolt pains down my leg, muscle spasms that actually move my foot. I also have very small muscle spasms in both legs and arm that happen a million times a day. It feels like this monster is alive inside my and in creating havoc independantly from the rest of my system. Having RSD is like reaching into a box of bits and bites daily and never knowing what to expect. I go through periods of very minimal pain. This can last up to a week. When the pain returns it often emerges in a new location as well as the old ones. When I have very minimal pain days I find I am extremely tired as if my body wants to sleep to regenerate. The most frustrating for me is the inability to "feel fit". In the past a small amount of regular exercise allowed me to feel strong and healthy and it never took long to feel in shape. Now, no matter what I do, it is always such an exhausting chore. I am out of breathe in no time and need to rest or sleep. I have always been a physically strong girl and have a very optimistic positive outlook on life. I have a wonderfully supportive, loving family and great, understanding friends but feel very alone when most of my doctors have never dealt with this disease and no one can understand what RSD feels like unless they have it. I have just been referred to a neuroligist whom I hope can offer some support. I admire all of you for your strength and courage and find it really helps to just sit and read so many posts I can relate to. I can't imagine though what the future holds and how I will endure this in the long term. One day at a time in my new motto. Rest, love, a positive attitude and soft comfortable clothing and furniture seem to be the way to go. I miss my old life and wonder if I will ever be able to work again. I now accept that I probably will not be able to return to my career as a Youth Crisis Worker in a Psychiatric hospital as it is too dangerous and is what got me here in the first place. I am looking in a new direction and hope I can change the course of my path successfully. Thank you for all your words of support and knowledge of experience. We will just have to get through this together!
Rest and be peaceful,
Carolyn

[Bussey]

Hello Carolyn,

I'm sorry that you have been diagnosed with RSD! Obviously, you are a very strong woman, to be dealing with this monster, and taking zero medication! You are definitely experiencing many classic RSD symptoms.

Debilitation and fatigue, are RSD symptoms. Not only does my body want to shut down, during flare ups, it does shut down! Usually, individuals who suffer from RSD become insomniacs, and need medication sometimes, to help them sleep. Most of the time, I long for sleep to come. However, I can understand your frustration about being sleepy constantly. That sounds like a good topic to bring up with your new neurologist. I have experienced what you call head rushes. That used to happen, when I would attempt to move my affected limb. Thankfully, I never experienced it, to the point of fainting. I'm not surprised, that you feel like you have been beaten with a baseball bat, especially, since you are not taking any medication. I'm very glad that you have reprieves from the pain. Describing the muscle spasms, as if the RSD is alive inside of you, is exactly the way I would describe that feeling. I experience the spasms fairly often. Discoloration is also common, among RSD sufferers.

The lack of an appetite, and the suffering from diarrhea, are symptoms that I think you should definitely bring up at your next appointment. I'm not sure how they relate to RSD.

I hope that you will be able to return to work, at some point. It seems that you have a lot to talk about with your Dr., during your next visit.

Take care.

Bussey

[reruho]

Carolyn,
First, let me tell you how sorry I am that you have had this monster invade your life. I would never wish this on anyone. I hope you will be able to find some relief soon. What type of doctor(s) are you seeing at the present time? Have you been referred to a pain management clinic? PM clinics are willing to try things that a Primary care doctor is not comfortable doing. My life has improved since I went to one. RSD can be treated by a variety of doctors, find someone that you trust and can be there for you when you need them.

I remember the extreme fatigue in the early days. I used to feel ike my body was made of lead and every thing was just so hard to do. It improved for me with time. Be sure to rest when you are tired, your body needs it right now. I find a 5-10 minute nap can really help me function.

Just about everything you mentioned except the lack of appetide and diarrhea are common symptoms. You may have a sensitive digestive system that is responding to the pain. And while these are not typical RSD symptoms, they are serious complaints that you need to address with the doctor. It just doesn't work when you are running on empty.

You will find over time your symptoms change and evolve. Some will come and go, others go away. I almost find my pain changes and evolves over the course of the day, this is one reason that keeping a pain journal is important. You will be able to spot pain triggers, what helps and how you body responds. It can be a useful tool for your doctor.

I also keep records on everything (I am ADHD and a little bit OCD, if there is such a thing.). I use Excel to set up tables to keep track of everything. I have my blood pressure records with graphs. I have my medication log with start/stop dates and side effects. I have my summaries of appointments and all my labs on a spread sheet. I carry a health notebook with copies of everything in them. I have to say my Primary loved my record keeping with the colored charts and graphs. Since I am visual person, the charts and graphs made discussing things so much easier.

Be sure to write up your questions for your doctor. One of the most crippling problems with RSD is the fuzzy thinking and brain fog. Ther are many times when I can not think of the next word I want to say. Outside of the constant pain, this brain fog is one of the most difficult things to deal with. If I don't write it down, I won't remember to ask it. I leave room on the page to write the responses, too. I keep all my questions in my health notebook. My last question for my doctors is always, "WHAT IS THE PLAN?" I write that down so I can remember it.

This website has a great set of questions to ask on your first visit. You might want to check it out. I also tell people to trust your gut feeling about your doctors. If you have reservations, look for another doctor. I didn't trust my gut feeling about my 1st PM and I left him when I had a situation where I needed him and he was not there for me. He also didn't like to talk and always seemed annoyed by my questions, many times he would not answer them. My new PM is so much better and always has time for my questions.

I must say that you are coping well, not to be using any meds. You must have postive ways to deal with the pain, especially since you have so many drug allergies.

You are right about the lonliness. I have never felt so alone as I have since having RSD. Words can not describe this condtion to others. I was so happy to find a forum where I could ask questions and find out all the things the doctors do not have the time to discuss with you. I have actually received very little information from my doctors. I have done extensive research to try and understand what I found to be the most confusing condition. All these crazy and seemingly unrelated symptoms had me baffled and had me questioning my sanity. Was this really happening or was I imagining all thes things happening? I often think how much more painful this condition was before the internet when you factor in the lack of information and the lonliness. I can see why people were driven to suicide.

Well, it's 5:00 am and it is another night without sleep. I guess I will sleep when I can. I am going to go wash some dishes and fold some laundry while I am up. I wish you some rest and a low pain day.

Reta

[Guysgal]

Thank you so much for your informative and supportive responses. I am relieved to discover that the symptoms I have been experiencing are related to RSD. I too have wondered if I was "going crazy" many times over with the wide variety of strange symptoms. I have also noticed that my symtoms seem to evolve over time. I never know what to expect from one day to the next. I can go to bed with grey frozen painful legs and feet and wake up with a painful arm and RSD headache. I also experience insomnia. Sleepy insomnia coupled with pain keeping me up till the wee hours. The doctor thinks my RSD may have originated from an incident in 2004. I sustained soft tissue injury at work (psychiatric hospital) from a horrendous assault. I healed orthapedically within a month but 6 months later RSD symptoms emerged putting me off work and in pain for 7 months. There was never a diagnosis at that time though. Suddenly one day my pain disappeared and I returned to work non the wiser thinking that whatever I had was now gone. Fast forward 3.5 years later to Dec 2008. I was working nights and my right leg swelled to double its size and turned a dusky purple. Then the pain started to set in and became excruciating. The profuse sweating of my lower extremity and the deep bone pain had me parked on the couch for the next few months unaware of what I was dealing with. 5 doctors and a million tests later left me with a diagnosis of CRPS type 1 (I prefer RSD). Once I had the diagnosis I started to research this horrible disease and discovered what I had to look forward to. The doctors doubt that the RSD will go into remission as it once did and I tend to agree as it has become systemic. I wonder if the fainting, low pulse/blood pressure and digestive issues have anything to do with the autonomic nervous system as it is what controls these functions. If the autonomic nervous system has been compromised as the sypathetic one has in the case of RSD then these symptoms may fit. I don't like to self diagnose as it can get one into trouble but I have discovered that most doctors have no experience with RSD and other nervous system issues and researching and providing them with information can be helpful in allowing them to think "outside of the box".
I am so relieved to find this forum to air my thoughts and concerns with those of you who really do understand what I'm dealing with and are so supportive and encouraging.
One day at a time...
Keep warm, comfortable and rested,
Carolyn

[reruho]

Carolyn,
I have been thinking about your digestive issues and they could be RSD related. I just went through a period where I would get physically ill when my pain reaches a certain level. I can only describe it as being similar to motion sickness, nausea and throwing up followed by extreme exhaustion. I now carry dramamine with me to help with this. This is any pain, RSD related or not. It started around March and seems to have calmed down again.

I am one of those that has not had any discoloration and only had swelling in the early days. I suffered a broken wrist from a car accident. The airbag smashed my hand against the window. I remember the swelling and burning started two weeks after the accident. When I asked about it with the Ortho's office I was told to take Benedryl (the skin was irritated) and to elevate the arm to prevent theswelling. I slept for months in a reclinder with a pillow in my lap, elevating my arm.

I think the low pulse/low BP is interesting. My BP shot up to 170/100 shortly after all this started. My accident was on Halloween 2007 and by December my Primary and I was working on the BP. I was lucky that I had it under control after a month and two medications. Now my medication keeps my blood pressure down around 100/70, which causes problems. When I go to the doctor and they use the electonic BP monitors, it will pump up again if it doesn't sense something by 110. so sometimes it pumps up a couple of times and that makes my a non-RSD arm hurt. Do not let anyone touch or manipulate my RSD arm. I know those nurses think I am a pain in the butt but they aren't the ones that has to deal with the pain later.

You mentioned 5 doctors and a million tests. 5 doctors is average for the RSD sufferer. I have to say I was diagnosed early. I was under the treatment of an ortho and saw a surgeon for another problem and I asked him about the arm pain. I was very fortunate that he had personal experience, his son had RSD from a sports injury. He named the monster and said those three letters (R-S-D) that changed my life. He told me to ask the Orthopedic Surgeon if this could b RSD at my appointment the next week. I asked the question, the ortho said yes and I was shipped to pain management. I felt like I was dumped. It took about 5 weeks to get into a PM clinic.

Right now I am dealing with Dry Eye Syndrome. Only one of my medications do not cause dry mouth. My eye doctor diagnoses DES in June and told me, If it drys your mouth, it will dry out your eyes." This past week, it has gone from mild to severe. I never realized my eyes could hurt so much. Besides the burning and itchiness, my eyes just ache. It is going to take a week to get a referral and who knows how long after that? Because it isn't life threatening, the process can't be speeded up. It's a bummer, because I have to self medicate (which isn't working that well) until I can get help. I can feel the emotional roller coaster starting.

Reta

[reruho]

Carolyn,
I did some research today and Ihave a short list for you. My best advice is to read up on this monster to be sure you protect yourself from poorly educated (on the subject of RSD) members of the medical community.

http://www.rsds.org/2/what_is_rsd_crps/index.html
http://rsdrx.com/what_is_rsd.htm
http://www.rsdhope.org/Showpage.asp?PAGE_ID=4&PGCT_ID=547
http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/reflex_sympathetic_dystrophy.htm
http://physicaltherapy.about.com/b/2009/02/05/post-surgical-pain-and-swelling-symptoms-of-crps.htm
http://www.nationalpainfoundation.org/articles/52/signs-and-symptoms
http://www.discmdgroup.com/pain-management/complex-regional-pain-syndrome.asp
http://www.neurologychannel.com/rsd/index.shtml

Happy reading.
Reta

[Guysgal]

Thank you Reta for your valuable resources and kind concern. I really appreciate the time you take to think of others. I will check out the links you suggested and I'm sure I will gather a wealth of information. I would like to find a good article to give to my physiotherapist. I am only her 3rd RSD client ever so I'm sure she would appreciate information relating to her field. I have found hydrotherapy in a local pool very comforting. I'm not sure just how helpful it is in terms of its actual effect on the RSD and perhaps it has helped it to spread, but, it keeps helping me strengthen my core and I learn to move through the pain in the water so it is relatively weightless. It just feels so good. I must admit that the evening after physio and perhaps the next day I am particularly sore and grey. I just figure that if all this movement helps as an alternative to medication then it may be worth it in the long run. I read about an athlete that suffers with RSD and she catually runs through the pain. I certainly wouldn't have the strength or sustainable energy to run anywhere but slow fluid movement coupled with my iron clad determination usually helps me get through the day. I was sitting outside this evening staring at my garden, pond and waterfall feeling very relaxed when I suddenly began to think about all my favorite activities that I will have to give up or modify. I took my health so for granted before and really enjoyed walking around the zoo with my family or hiking trails around my cottage. Now I'm lucky if I make it into the afternoon without a nap and my world seems to have shrunk into the familiar perimeter around my home and cottage if I can stand to drive all the way there. I think I'm pretty fortunate as perhaps I don't suffer in pain as debilitating as some of you do. I don't have alydonia 24/7 only sporadically but I do have the opposite...complete lack of feeling in my toes. I do find it uncomfortable to have someone touch my foot and leg but not completely unbearable. I do notice how the pain shifts, moves and changes on a whim as if the sypathetic nervous system has become an independant entity. I have to make a plan for activities I can do to try to stay active in the colder weather. A membership to the pool across the street would probably be a good idea and the purchase of a SADD lamp is a for sure this winter. I live in Southern Ontario, Canada where the winters are nice and cold...yuck. I find myself looking for a new purpose, this can't be it. My life (and yours) took a complete left turn when this monster rolled in. I am so used to being an independant woman/mother/friend. I suddenly feel as if I have less to offer somehow. I need a new focus, perhaps an online course, write a book, something, anything. I'm only 45, too young to sit out the rest of my life. Thanks for listening as I ramble on and on. It just feels nice to communicate with someone who understands. I will go and check out some of those links...have a soft and low pain day.

Carolyn

[reruho]

Carolyn,
Many RSD sufferers find hydrotherapy very helpful. I think it is extremely benefical if you have RSD in the lower extremities, which hampers walking. I really think the lower extremity RSD is much more devasting since it interferes with your ability to walk. Just be careful not to overdo it. we walk a fine line between too much and too little. If you are sosore the next day, maybe you need to reduce your exercise just a little bit. I would be careful in the winter not to get chilled after getting out of the pool, especially if you are sensitive to the cold.

You might want to try Tai Chi. I am a great proponent of this form of exercise because it is gentle controlled stretching. It will also improve balance and is often recommended for seniors for this reason. There is no physical contact. And, one of the main mantras is don't do it if it hurts. Continue to work on it and pretty soon you will be able to do it. Besides the exercise,there de- stressing aspect. I can go to class with brain fog or really tense and leave the class relaxed and able to think clearly. I always sleep well on Tai Chi nights

I have RSD in my left arm, which is my non-dominant arm. I have been able to regain full range of motion and strength from PT. I am able to live a pretty normal life as long as I take my meds regularly. I got my primary to treat the vasoconstriction problems, so my arm does not get that freezing cold pain. I think that is the main reason I am able to use Motrin to manage 80-90% of my pain.

I was doing laundry all day long and just the lifting and pulling out the wet clothes was too much. By 7:00 pm my arm was starting to hurt. I am getting better about judging how much I can safely do. The weather is coming down with Hurricane Bill getting closer to Florida, tropical weather is a bit pain trigger.

The early days of RSD were particularly difficult since it all started in the winter and I am cold sensitive. I really have more problems with the temperature in the summer since all the building are refrigerated in Florida. Going into a building with that cold blast of air is so hard for me. I wear a sweater and a coat to my PM clinic, they keep those offices around subzero temperatures. I try to be one of the first appointments after lunch to minimize the time I spend there.

I find the allodynia is direct related to my pain levels. Low pain equates to little or no sensitivity, while high pain means high sensitivity. It also gets triggered when I wear anything restrictive or tight on my RSD wrist. People can touch my arm but manipulating it causes me pain. The last orthopedic surgeon that did an exam sent me to the ER for pain relief. The PM told me not to let anyone touch my arm. Now it is just a standard rule not to let anyone do anything with my arm. At my last nerve block I wrote on my arm "NO IVs, NO BPs" with a felt pen.

I am almost 53 and I definitely know that I am too young to stay at home suffering. I do volunteer work where I am out with people. The social interaction really helps me keep depression on the other side of the door and helps with the pain. I think it triggers those feel good hormones in my body.

I was in Canada in May. I was in the Yukon and BC as we traveled from Alaska to Washington state. My parents live in Alaska and my Dad decided I sounded like I needed a vacation. So he sent me a plane ticket and we drove their motorhome back to Florida. It was good to spend time with my mother, my dad was a pain in the butt most of the trip. I have not been to the eastern side of Canada. The one place I really want to see is Nova Scotia and Prince Edward's Isle.

I better close, it is time to chase everyone off to bed. I am feeling much better, my pain meds have kicked in.

Sweet dreams, good rest and a low pain day tomorrow.

Reta

[Guysgal]

Hi Reta,
I just wrote an long reply to your post and lost it so here I go again...
I had a 2d doppler done today to check my heart and arteries due to my fainting spells and expreme dizzyness. The doc says my heart is fine and believes that the RSD is the cause for the symptoms. I'm hppy to know my heart is fine but annoyed that i will have to just "live with" the dizzyness and occasional fainting. Ridiculous!
So you live in Florida. My parents are snowbirds and spend their winters in the Panhandle just outside of Destin and my inlaws own property in Delray beach and Ontario and split their time between both. My hubby's siblings also live full time in Delray Beach. It is such a nice town but growing fast.
The east coast of Canada is a BEAUTIFUL place to visit. NewBrunswick, Nova Scotia, PEI and Newfoundland are all breathtaking and well worth the trip. We drove a camper van to NewBrunswick two summers ago (while my RSD was in remission) and spent a month seeing all the sites we could. I would love to go back there again soon but only during the summer as in the winter the snow can be higher than the houses. we would have to make very frequent stops though as I can stand sitting in the car for more than an hour at a time now. I am just in the process of appplying for our passports as my daughter is going To Europe with her school in April and we would like to head down to Florida to visit my hubby's family. I will no longer drive to Florida but I will fly and get there faster.
What did your doctor do to get rid of the freezing feeling in your arm? Both my feet are freezing 24/7 even when the temperature outside is 90+. The least my feet sould do is help cool down the rest of my body but no such luck. I agree with you with regards to cold stores and offices. I can barely stand grocery shopping due to the frigid temperature of the store.
I am concerned about future blood tests and needles etc. I seem to have developed RSD in my Left arm in the area where I had 3 separate blood tests and the dye injection. I don't want to risk the other arm which is clear from RSD. The doctor wanted to do yet another blood test to see is the "bad" antibodies have returned and I declined it. I just don't feel like being poked with another needle by a nurse who has no idea the pain she is inflicting. Perhaps once I see the neurologist I can come up with a solution. Has your RSD remained just in your arm? I wish mine would stop traveling to new regions on my body. Enough already.
Anyway, time for a nap. I have been woken up between 4 and 5am every moring for the past week by pain so I need a siesta.
Take care and stay away from that sub zero airconditioning.
Carolyn

[reruho]

Carolyn,
I understand about the traveling. I flew to Alaska to see my parents and we drove a motorhome back to Florida. I think we drove 6000 miles. I had my dad stop every two hours so that I could walk the dog. I walked the dog or went into the rest stop restroom. That was enough to move my body and to get relief from the vibrations. I was happy we were in a motorhome, they have great seats. I could not have riden that far in a car. When I travel in a car, I try to stop once an hour. My husband is very understanding. I also cradle my arm on a large fluffy pillow. that helps reduce the vibrations.

I wear a light cotton sweater all the time so that I can adjust to the big temperature changes. I keep a light jacket/ windbreaker type in the car all the time. I even have gloves in the pockets. I have shopped with gloves on. I know it looks strange but it helps keep me warm and I don't care what others think.

I read an article by a Canadian doctor and his treatment of RSD patients. He was using medication to improve the circulation in his patient's extremities. I started doing research on Raynaud's Syndrome and PAD (peripheral artery disease). There was a couple of medications mentioned and I asked my Primary about these medications and if he thought these would help improve the circulation, thereby improving my temperature regulation. I was going to ask my PM about prescribing one of them. My primary offered to prescribe the Trental (pentoxifylline) for 3 months to see if it would help. I was seeing him every 2 months while we were working on my cholesterol. I got the total cholesterol down easily but the HDL was not responding. It was the best thing I have done for myself, I started seeing results in a week. Here are my notes and how I started the conversation with my Primary. (I type up my questions before each appointment and write their responses in and keep them in my health notebook.)

"I have a problem with my left arm getting very cold and it causes me a lot of pain. I don’t feel that my PM is taking it as seriously as he should. I really think control of my pain would be greatly improved by addressing this issue. I worry about the long term effects. Do you think this could increase my chances of a clot? Do you think something like nifedipine (procardia) or something like pentoxifylline (trental) would help. I have been doing lots of research to try and find an answer. If so, I will press my PM on the matter. Will this affect my BP meds you prescribe? Should he confer with you before we make a decision?"

My RSD started just above my left wrist (it was broken in a car accident). Within 3 months, the RSD had spread up my arm. I think my upper arm has the most problems, this is where I have the most freezing problems. I remember my upper arm freezing while the lower arm was burning. Talk about confusion!!! LOL.

I am now having problems with my eyes and severe dry eye. I am using 2 different eye drops and having to use them 5-6 times a day. My dry eyes have even woke me up during the night. I thought it was related to my medications, 8 out of the 10 prescribed have dry eye/ dry mouth listed as a side effect. I was reading some of Dr Hooshmand's puzzles and he was saying this extreme dry eye is a RSD problem. Dr. Hooshmand is a RSD expert with a great website (www.rsdrx.com). You might want to go on his website and look through his puzzles and see if there is any reference to the fainting problems. The puzzles are answers to questions that people have asked him. I am waiting for a referral to an opthamologist. I am hoping that it will come tomorrow.

Carolyn, you are the 2nd person today to mention problems with blood draws. Are both of your arms affected? Can you request someone with more experience do the blood draws considering the situation? Perhaps the nurse doesn't understand how much the blood draws hurt you. Have you told them how painful these simple procedures are? Do you think they would even care? I have people that I avoid at the lab I go to. I only allow blood draws and blood pressure readings in my non-RSd arm. I do not allow any one to touch or manipulate my RSD arm.

I hope your nap helped. I am ready to nap. I went to bed at 3 am and was up at 8:30 am. I am a night owl that rises with the chickens, just not at the crack of dawn. That early morning stuff is not for me.

Reta