Life with RSD by: Jen

Hey everyone!
I’m so happy to say that there is another blogger on here to share her experiences, rants, info regarding her life with CRPS,Etc!

On the right side of the page, you will see a menu with “Heather Lynn”, ” CRPS fighter Jen”, etc…

To read her updates/posts… You’ll just click on her name, and BOOM! It will be there! 🙂

There will still be the list of the latest posts on the side too!

For her first post, it’s her story living with RSD/CRPS.
From how she got it (which is an interesting story), as well as the challenges she’s endured.

All of our stories are different. Here is hers…

Thank you!
Heather Lynn


My life with RSD

*I was looking at my Facebook and came across this – it’s my story I wrote back in ’99 for RSD Awareness Month in May.*

by Jen B.

January 15, 2005 was just another ordinary winter day. I had to get up early that morning and leave on a business trip to Tulsa, OK. I got to the airport, parked my car, grabbed my luggage and off I went. I got to my gate and sat for awhile. The plane was running a little behind. I was hoping it wasn’t too far off so that I didn’t miss my connecting flight at O’Hare. Finally they came over the PA and we were ready to board. I got on the plane (an RJ…or Regional Jet) and sat in my seat. The plane started filling up as I sat reading. The next thing I knew the flight attendant (bitch as I refer to her now) asked me and a few others to move to the back of the plane to even out the weight distribution.
No worries I thought, I’ve had to do this before, and I’ll have a row all to myself. So I grabbed my things and began walking to the back of the plane. As I was getting into my new seat, the flight attendant pushed up behind me and my left foot got caught on the back of the seat in front of me (as I was turning my leg to get in to the seat) and all of a sudden I felt the most intense pain, fell back into the seat and almost passed out.
I looked down at my leg and it was crooked. My knee dislocated so badly that my ankle was actually cocked to the side. It took me about 30 seconds to get my bearings thru the pain and I said, “Help” to the flight attendant. Either she didn’t hear me, or she didn’t care but she walked by me and continued on to the front of the plane. So I started screaming, “Help!” Long story short, she wouldn’t get me help right away, just asked if there was anyone on the plane that could pop my knee back in so we could take off.
Luckily, the man sitting across the aisle from me had, had a bad dislocation and sternly told her that I needed medical attention. She himmed and hawed for a time (about 5-10 min had passed at this point) and I was trying to be as calm as I could be but was in so much pain and frustrated that this woman would not help me. Finally about 5 minutes later the pilot comes out and asks what is going on, why the door wasn’t closed etc and the gentleman across the aisle called him back. He saw me and immediately told the flight attendant to go call EMS and get Ice.
He sat with me, holding my hand, talking to me and holding the ice on my leg. Another almost 10 minutes goes by and the airport’s EMS boards the plane. They move me to this little chair and wheel me down the aisle, my leg hitting every arm rest down the plane. I was finally removed off the plane and taken into the terminal to be questioned by Airport Personnel and wait for the local EMS units to get there. Another 15 minutes goes by until EMS gets there and they take me to the hospital via an ambulance. Because I had a pulse in my foot, they wouldn’t give me any pain medicine until we got to the hospital. Finally, at the hospital, the dislocation is so bad that they have to put me under to re-set my leg. I wake up, still in pain and am taken for x-rays. They release me later on pain med’s, crutches and a leg emobilizer and tell me to follow up with my Ortho.

I see my Ortho and he says you should be fine in 4-6 weeks, stay on the crutches, take the pain med’s and sends me to PT. 2 weeks later I realize the pain is getting worse, not better. So he sends me for an MRI. That comes back clean, other than severe bone bruising. A few months later, I am in his office again, in a lot of pain, frustrated and don’t understand why this 4-6 week injury hasn’t healed. Luckily my office was letting me work from home because I couldn’t drive. I take my pants down and he got this scared look on his face. Then begins to ask me different questions about the pain. Is it burning? Yes. Is it throbbing? Yes. Temp sensitivity? Yes.Then he asked me to describe what bothered it. I told him I couldn’t even let my PT touch my knee, that water hurt, it hurt to shave, it hurt to have clothing on. Then he told me he needed to touch my leg but would be very gentle. I love him to death, but wanted to kill him. After feeling both legs, both feet and noticing color differences, and temperature differences he looked sadly at me and said those dreaded words –

[“You have RSD”. I said okay lets fix it. That is when he told me we couldn’t fix it and that I needed to see a pain management specialist. He also gave me what little info he had on it and told me just to go home and Google it.]

So I did and ended up crying the rest of the day. It was that day that I knew my life had changed forever. The next day I called my work and told my boss about my diagnosis and he said they would be putting me back on workman’s comp and I was no longer allowed to work from home. A year after it happened I received a lovely letter from my employer saying that my employment was terminated, but I was a valuable asset to the company and they would welcome me back with open arms when I was back to 100%. Not only had I lost a lot of the use of my leg, but I lost my job (which I LOVED) , my health benefits and financial security.

Within the first 6 months of my diagnosis, I became really depressed. I had always been such an independent person. I’ve learned that in my life, the only person that I could really depend on was myself, so that is what I did. Then my “friends” stopped calling, stopped coming over, my family is 3,000 miles away and I was a prisoner; not only in my house, but in my body. Then my ex mother in law suggested that I get a dog. I thought you are nuts, I can barely take care of myself, let alone a dog. My ex husband then moved in with me for a few months (which was very hard for me to even think about doing) to help take me to Dr’s appointments, help me with Bear, do the grocery shopping and just to help me. I can never thank him enough for doing that. But after a few months, we started fighting a lot again (NO we weren’t anything more than friends…NO, NO, NO!) and it was putting more stress on me so he moved back with his mom. But I am so blessed that his whole family, and my close friends out here have helped me whenever I need a ride, if I’m having a bad day and can’t go out. Not to mention they have been there more importantly emotionally, more-so than my own family. Honestly, I’m not even sure that my family really knows what RSD is. When I’ve gone home, the few times I have since getting RSD they do know that I am not the person I was before…but don’t really get the whole thing because they don’t see me often. I cannot drive far (I have a stick and it’s my left leg) but luckily I can still drive around town and can borrow a car if I need to drive further.

The first pain management Dr that I saw almost immediately wanted to put me on an SCS without trying anything else first. I was still in shock about everything and he wanted to implant me with this bionic device?? He tried a block in my knee (can you say OWWWWW) and then said he couldn’t help me. So, went to another one who treated RSD patients. I started getting a bunch of blocks in my back (at least 30) , tried tons of med’s, had an EMG, 3 yrs PT (land and aquatic) , trigger point injections, Chiropractor, Massage, Creme’s, TENS Unit, High doses of Vitamin C, Lidocaine patches, desensitization techniques, pilates, stretches, psycho therapy,etc. I was on crutches for 8 months, another year on a cane, and now just need to use the cane when I need it. I am fighting with my pain management Dr now because he’s dead set on blocks (some work, some don’t but not enough) and an SCS. But I’d really like to try the K, and at my appointment with him Monday I am going to talk to him about it, as well as accupuncture. What angers me, is that he teaches at the hospital in Philly where it is offered and he’s not once brought it up to me. I’ve been diagnosed with RSD by 5 Dr’s and still see my neurologist, Ortho and pain management Dr.

My RSD has now spread thru my entire left leg, and lower left side of my back. As you all know sleep is very hard to come by. I sleep maybe 2-4 hours a night, but am tired 24/7. I never have much of an appetite, memory and concentration problems ( I used to love to read, but it’s so hard now! Grrrr) and have also developed a thyroid problem which my endocrinologist thinks could be due to my RSD. I’ve gained weight from the RSD med’s, and my thyroid which cracks me up because I barely eat. I am in pain 24/7 and forget what it feels like not to feel pain. Cold water, cold weather, wind all make it worse. I feel like a human baromiter at times…I can always tell when the weather is going to change. I’ve recently had a dental procedure and my mouth hasn’t been the same since. My bowels are always irregular, sweat, night sweats, have problems controlling my temperature. I’m either really, really hot, or really, really cold. Muscle cramps and spasms. I can’t sit, stand or walk for long periods of time. Laying down with my leg stretched is the most comfortable thing for me. I don’t know what my future holds. I am single, supporting myself on my own, and it honestly scares the hell out of me…not having financial security.

While a lot of bad things have come out of this disease, a lot of good has come out of it too. I realized the people who truly care about me….because they are the ones who are still in my life, and have stuck by me thru everything. Because of RSD, I have met the most amazing, courageous, loving people, who I am proud to call my friends, but in my heart are now my family. Because of RSD, I met the love of my life, and he saw thru the RSD and saw me for me. Even though he’s not here anymore, he showed me that even though I have his disease, I still deserve to be loved and supported by a man. I’m glad that I am still able to have a smile on my face, and my sense of humor. Humor helps me cope a lot…as well as music. I’ve realized what a strong person I am, how stubborn I am (must be that I’m type A and a Taurus), and not to take anything for granted. Just the simple things like walking, not feeling pain, shaving your legs lol….it may sound stupid to most, but for the people who suffer with this disease it would mean the world. The Dr’s told me that I would never be able to hike, or to run again. But I did. Yes, it was a little hike (not what I had done before) and a 10 foot run, but I did it! It’s also let me think a lot about something I love to do – write. I’ve always wanted to write a book and am seriously now thinking about it. Just wonder, would anyone read it?

*In some ways I’ve come to peace with having RSD, and while I hate it, I love it because it is a part of me…it’s who makes me who I am. Just like it makes you, who you are. It’s a part of us, but it’s not everything.*

**We have RSD, but it doesn’t have us. And we will fight it together, until we find a cure.**

*Every little part of you is magical. Yes, even the parts that hurt, even the ones that are feeling disease right now. It’s alright to love what is in pain. More than alright, that’s exactly where your love is needed the most. So why not touch that part that hurts and smile at it, at yourself through it, and whisper: ‘I love you.’

4 thoughts on “Life with RSD by: Jen

    • jonestra says:

      jen my name is Tracy Jones I have rsd for 12 years at 5 years it attacked my organs and I have had to have some removed I saw you talking about your thyroid from my own experience I wanted to know if you know about cellular hypothyroidism and reverse T3 after 2 surgeries weight gain over 70 pounds without doing any diet changes 7 years of hurting so bad could not walk to bathroom in my house without cane and having to use cane to get up off toilet was using a wheelchair to go anywhere if needed to get out so please read about it or contact me if you would like to talk or need anything if you are only getting your TSH,t3 and T4 checked it is not enough I listened to my doctors for over 5 years when told that my levels were in the normal and this is having the right side of thyroid removed from swelling to size of an egg there is also some information on the RSDSA site about rsd and the cellular level as well as adrenal issues as I also have low low cortisol this is talked about on this page too if the endo or PC you see doesn’t understand any of this you will never get these issues helped as I have lived and figured out on my own since getting this under control I have lost 65 pounds in the last year and have more of life back


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