Well said catra

Here’s the short version: I used to try and keep it all hidden, but at times that’s just not possible everyday anymore because there are times when I need a walker or wheelchair, or I can’t drive, or work, or cook, or clean, or do anything but lay in bed and sometimes cry. Shoot I can’t even dress the way I used to, to hide it better. God I miss SHOES!!! They so make an outfit! Lol … laughing but I’s true!

When I do tell someone I just say, it’s a rare neurological disease… ya know.. kind of like MS, or Parkinson’s (tremors). There’s a short circuit in my brain. If I say that, they tend to relate, even though there’s so much more to it than that, and I know that’s not a very accurate description. It’s usually a nod and smile kind of moment. But I typically don’t care anymore that they (strangers) don’t understand. Too hard and exhausting to explain. I have no 30 sec elevator pitch that works and that is accurate.


The longer version: (aren’t you sorry you asked me to respond? lol)

I don’t know that I keep mine hidden so much, but rather no one can always see ALL the pain and mobility challenges. I tend to vocalize mine probably more than I should. It’s happening and I don’t know how to keep my mouth shut when it’s so intense. When it’s not at a crazy level, I don’t bother mentioning the pain because it’s there and it’s not leaving and I think that it’s like a gnat that I am just TRYING to ignore.

When pain levels surge this is when I become impatient, and short, and assertive (some have another name for that… starts with a B) and sometimes downright angry and/or depressed. My loved ones can’t seem to remember that I am trying to push through, or lay down and get through the pain, or they remember but will just never really understand. Although I will say this, when it’s really bad and I am struggling to walk from here to wherever, which can be as short a walk as my bed to my bathroom with a walker, tremmoring like crazy, crying, trying so hard to remain independent, they are wonderful. They can see it.

I have been in business for myself as a video producer for one year longer than I have had this disease. My first year with CRPS was my hardest. I had back surgery and woke up with this damn thing. I was paralyzed for a week from the waist down and had to learn to walk again along with my new CRPS/RSD leg and foot. I was 10 years younger than I am now, and the disease has changed, progressed, spread, and become much more disabling. I think that made a difference (being younger) from how I am able handle my life and disease (public face) now. After I regained some, a fraction of my former self, I drowned myself in my business, and like you I have always been a hard working productive person and didn’t want to be perceived otherwise by anyone in my work environment. I learned to fake it very well. I would push and push and push and privately cry myself to sleep.

Here I am 10 years later and I am winding down my business and changing my life. I have had to come to terms (or at least try) with the fact that I am no longer able to handle the demands of my video production business AND CRPS. It’s a HIGH STRESS, crazy amount of working hours a week, fast paced profession. Hum… something I used to love about it. In 2009 I came off my last on location shoot (15 hours), the whole time on location with my “public face”, and said to my husband on the way home, that’s it, I’m done. I physically can’t do this anymore.

Since then I tried for a few years to continue long hours, fast paced, yadda, yadda from my desk. Then in 2011 I knew it was over. Or at least this chapter. I work with some pretty complicated technology, and some of the worlds biggest brands and their executives. You must be on top of your game to succeed in this industry. The disease has done a number on my mind (concentration, memory, focus, etc.) Since then (2011) I have been winding down my commitments. I have tried to look at the upswing of having time to actually focus on myself, bring down stress and consequently pain volumes, and MAYBE do a project that I actually want to work on. Not for money, but for self-satisfaction. If I have my way, there is a documentary in my future. I REALLY want to do one on CRPS… for so many reasons. We shall see. I have also thought of taking up photography. I am thinking of selling one of my video cameras for a nice still or DLSR (one that does both video and still images). I have so much desire, will and determination, and this disease does nothing but get in my way. I am trying so hard to find BALANCE. Gosh it’s tough! Seems like a four letter word at times.

I am lucky that I do have a very close girlfriend that does ask and does care how I am doing. Although we see each other much less. For the most part, I’m just not up to it. I also have some family that try to understand and have done research and have offered anything they can. But, for instance, my eldest son, 24 y/o NEVER ask me, how you doing mom, anything I can help with? I don’t know if he’s in denial, or if it’s a huge character flaw, or what. I know he loves me, but it hurts when he doesn’t at least inquire from time to time. And here’s where I am super lucky/blessed… my husband. I do not want to ever have to walk this journey without him. He’s not perfect, we’re not perfect, but for the most part he gets it more than anyone else in my life.

It is soooooooooooooo frustrating that you can’t just say I have CRPS or RSD and instantly people know exactly what you’re talking about. Even more so in the medical community.

So I guess that’s it. I guess you could say that I have less and less of a public face and that I publically and privately suffer, but NEVER am I looking for sympathy; quite the contrary. I work hard to remain independent and I work hard at acceptance. Acceptance is really hard for me.

I started this back during the holidays and not a lot of folks were actively posting at the time. So, I am asking the question again to see if others would like to share their ways of handling it.Thanks for considering.

I have only told a few people about this because occasionally I still cry when asked how I am doing and I am not a crier. It makes me mad at myself. I too am very independent and have had the same job for 32 years. It makes me so mad that I would love to work another 8 years but at the rate I am going I give it 6 months. I have seen so many trying to get disability that don't need it and it will take me probably 2 years to get it with this disease. Either the neurontin or this disease has caused worsing brain fog. I am really scared and don't like talking about it. I just act like I am normal to everyone because I really don't want every conversation to be about my health. Every second I can keep my mind off it the better I feel.

Murgir I'm so sorry things aren't working out for you at work. I'm not surprised you feel so bad, or that it's something that is hard to talk about. Stuff like that, it's damn difficult to even think about it, let alone get the words out there...

The brain fog is horrible, I hear you on that one. Scares me rigid some days. I am a tutor, and the reason I go almost med free is mainly because of the brain fog thing. I couldn't think on Neurontin at all myself, and a few others had the same effect. And if I can't think I can't work. Some days I feel like a mist has crept in anyway... I don't know. Sometimes I wonder how many more things can this disease affect or take away from us?

Day to day is all you can do murgir. Keep plodding on and don't give up hope. The future seems too scary to be looked at at times, so I try to keep my eyes on the here and now, and just vaguely hope for the future.

The disability claim time is ridiculous, and makes me so mad when people who really need it - like you (who should be applauded for trying to keep going as long as they have) have to wait so long. Try to remember that you deserve to get it, and have every right to it. Don't ever class yourself in there along with the ones we all know who give the system a bad name...

Hang in there murgir. Be proud of who you are and what you've achieved in the face of this disease. No matter what else changes in your life, it won't change that. You're doing an amazing thing here just getting up each day and fighting

Bram.

Hi Murgir,

I was wondering if you have talked to your doctor about the brain fog? I ask because that is a huge issue for me as well. When I spoke with my doctors about this they offered tips on how to dose the Gabapentin in a way where most of the medication was hitting me during the evening/overnight hours so that I could be more alert during the day. For instance - if you are taking a regular dose 3x per day, you could ask about taking it only morning and night by doubling up on the evening dose. Also, depending on how long you have been on it and how high your dose is, you could also ask about stepping down the dose amount to see if you can think more clearly and still gain the benefits. I had noticed that I wasn't getting much benefit from Gaba after the first 6 months and so we decreased it and then after a little over a year we dropped it completely.

Many of the medications cause these brain fog or cloudy thinking as dose pain & lack of sleep. It helped my doctors and I to keep a detailed list of all the medications time of dosing and side effects so that during follow-up appointments we could easily see how to adjust timing/dosing or even adding/changing/eliminating meds based on the combination of side effects. When the side effects outweigh the benefits it might be time to consider something different.

I think most would agree that there are many reasons we have brain fog - for me lack of sleep was really wreaking havoc on my brain!! My doctor had me put a counter on my nightstand so we could see how often I was waking up.. this showed us that in a 5 hour time span I was waking up between 16-22 times. No wonder.. I couldn't focus :/ Now we are working together to try to figure out how I can get better sleep. Trying everything from a different mattress, taking evening meds earlier instead of just before bed, meditation in the evening etc., hopefully we figure out something. My point is.. sometimes it is not just one thing causing the 'fog' and if one area is improved then it might make all the difference in the world.

You are very strong!! I hope you are able to continue doing what you love for as long as you desire. Is it possible that your employer would allow for additional breaks so that when your brain is getting the best of you that you could take a 10-15 minute break? Maybe doing that would help?

Wishing you a better day,
Tessa

Thanks Bram and Zookester, I seen an old post on here a while back about someone who was in remission but didn't say how it happened. He had not posted in a long time so I wrote him just in case he was still on here at times. He honestly emailed me today and said PINGA
put him remission. I wrote him back to see if he ate fruit with every meal and did the pinga meditation 3 x a day, how long it took and how long he had RSD before trying it. That keeps coming up from people in remission. Hope that is a answer to my prayers. I plan on getting up 30 mins earlier starting next week. Setting my alarm for 20 mins before I start. They are 15 min sessions and always put me to sleep!!! Doing it at lunch setting my alarm then too. And seeing if it works. Y'all have no ideal how much help you have been to me. Thanks again

Zookester I will ask about the brain fog. Starting my list of questions tomorrow. I am afraid and excited to see a pain doctor and new neurologist in 1 1/2 weeks. When asked what pain meds I was on by pain clinic receptionist and I said none but neurontin and wasn't wanting pain meds just wanted to see him about options other than pain meds from him she probably about fell over. It was probably a first for her. When I got a referral for him I wrote the other neurologist a letter and took it to his office that said: The best chance for remission is 1-6 months and that I was getting worse fast then simply wrote out Questions ... I had about 3 what will help slow this or put me in remission. 1. Will a nerve block help 2. Are there other options besides neurontin 3. Seeing a pain management doctor for possible nerve block
Then my symptoms. It's a shame to have to do something to get him to do something he should have done automatically.