[LIT LOVE]

Has anyone else noticed themselves not only isolating themselves socially, but also preferring to reduce their environmental stimulation? Especially when your pain is flared?

My favorite time of the "day" has become late at night when the rest of the world is asleep and there is little to no sound or light. When I'm away from home and my pain begins to escalate my first objective is to get some where calm--a coffee shop, library, bookstore, even bathrooms can work.

At the height of my pain, pre strong meds, post radio frequency neurotomy, I couldn't walk into a mall due to the sensory overload. Being driven was nightmarish, still not fun for me now, but at the time I was crying over bumps in the road. I couldn't watch any television or listen to music. Wind became a new enemy, and on and on...

Ive always tried to understand why I feel less pain in the (warm) ocean than in a pool, and a few weeks ago I tried a bath with Epson Salts. I used a few pounds, and it was a similar feeling. Or should I say lack of feeling? Which is a VERY GOOD THING for me. It felt like the switch is being thrown on to low.

Has anyone undergone or heard about Restricted Environmental Stimulation Therapy (used a Sensory Deprivation tank) for RSD?

I joke about my Goldilocks method of everything having to be just so, not to cold, not to hot, etc. But, it would make sense if we reduce the sensory intake for our brains, then there are fewer opportunities to misfire?

[peppermintpatty]

I have not heard of this but very much understand what you're saying. Going to the grocery store for me now is next to impossible. A trip to Target (formerly one of my favorite haunts) puts me right on the edge. Anything - a child screaming, a screechy cart, even being overly cold or warm - is enough to make me want to retreat.

It's really quite frustrating, isn't it?

[Kakimbo]

Hi Lil and Peppatty.

MEE TOO! It's horrible. My husband has to take me to the grocery store. I get a cart and follow behind him because I'm afraid of people walking into me or hitting me with their cart. I haven't been to the mall in a year and a half (when I got RSD) and even walking down a hallway at the doctor's office is hard when other people are there.

I used to be a loud and rowdy girl but now I need quiet and darkness. We live in a tiny country town and three of my neighbors are retired and have LOUD projects they work on during the day. (Lawnmowers, air compressers, restoring a junky old sailboat, etc...) I can't stand it. (Our street is a one lane gravel road) Even sitting here now, my central-air is on and I'm about to climb the walls.

Thank you for this great post. Until now I thought it was all in my imagination!

Kim

[edever34]

Makes me want to go "HMMMM" I didnt realize why I have been staying up later and later,sometimes till 3:00 am or so -then sleeping the next day away. I will pay attention to this-Thanks for bringing this to my attention-Fondly-Carol

[LIT LOVE]

Thanks for the replies!

I found some places that offer this therapy in the L.A. area. I'll let you know how it goes.

[olecyn]

big deep sigh...o, yes I hear everything u r saying

Originally Posted by LIT LOVE

Has anyone else noticed themselves not only isolating themselves socially, but also preferring to reduce their environmental stimulation? Especially when your pain is flared?

My favorite time of the "day" has become late at night when the rest of the world is asleep and there is little to no sound or light. When I'm away from home and my pain begins to escalate my first objective is to get some where calm--a coffee shop, library, bookstore, even bathrooms can work.

At the height of my pain, pre strong meds, post radio frequency neurotomy, I couldn't walk into a mall due to the sensory overload. Being driven was nightmarish, still not fun for me now, but at the time I was crying over bumps in the road. I couldn't watch any television or listen to music. Wind became a new enemy, and on and on...

Ive always tried to understand why I feel less pain in the (warm) ocean than in a pool, and a few weeks ago I tried a bath with Epson Salts. I used a few pounds, and it was a similar feeling. Or should I say lack of feeling? Which is a VERY GOOD THING for me. It felt like the switch is being thrown on to low.

Has anyone undergone or heard about Restricted Environmental Stimulation Therapy (used a Sensory Deprivation tank) for RSD?

I joke about my Goldilocks method of everything having to be just so, not to cold, not to hot, etc. But, it would make sense if we reduce the sensory intake for our brains, then there are fewer opportunities to misfire?

[hope4thebest]

In the morning before work, I used to watch the local news, and recently I can't stand to hear them babble on and on..it never bothered me in the past..
I also used to crank up my car radio, and agian, i can't take the noise and drive most of the time with my radio off in silence, or will play the classical music station very low...it's all making sense to me now..

When I can, I meditate, which I find relaxing and helpful in a myriad of ways..but unfortunately, I have severe tinnitus in my right ear which produces a shrill sound 24/7 ..I have no choice but to cope with that..
Silence is golden..
Hope4thebest

[Kakimbo]

h4tb...

There is this herbal (I think) new drug that treats tinnitus. I've seen the commercial on FOX NEWS, usually around 5:00 - 7:00 pm. I will pay attention tonight and get the info for you. I was considering trying it too. My tinnitus seems to become worse when I am in greater pain. I'll let you know.

Kim

[Kakimbo]

H4tb, and all our other friends here...

I found a new medicine for the treatment of tinnitus. "Quietus". I don't know if it is and herbal suppliment or not. The website is www.quietrelief.com. Phone is 800-840-1795. I'm gonna check out their website now.

Hope this helps.

Kim

[fmichael]

Without in any sense being flip or undercutting the seriousness of your troubles* - which I experience in response to far from subtle stimulation - I am struck by the terrible irony that, for many of us, isolation is the worst part of this.

Mike


* See, Hyperacusis in patients with complex regional pain syndrome related dystonia, de Klaver MJ, van Rijn MA, Marinus J, Soede W, de Laat JA, van Hilten JJ, J Neurol Neurosurg Psychiatry 2007 Dec;78(12):1310-3. Epub 2007 Apr 30, FREE FULL TEXT @ http://www.rsds.org/2/library/articl...n_Marinus_.pdf

ABSTRACT

INTRODUCTION: In complex regional pain syndrome type 1 (CRPS-1), patients may have manifestations of central involvement, including allodynia, hyperalgesia or dystonia. We noted that more severely affected patients may experience hyperacusis, which may also reflect central involvement. The aim of this study was to evaluate the occurrence and characteristics of hyperacusis in patients with CRPS related dystonia.

METHODS: The presence of hyperacusis, speech reception thresholds (SRT), pure-tone thresholds (PTT) and uncomfortable loudness (UCL) was evaluated in 40 patients with CRPS related dystonia.

RESULTS: PTT and SRT were normal for all patients. 15 patients (38%) reported hyperacusis and this was associated with allodynia/hyperalgesia and with more affected extremities. UCLs of patients with hyperacusis were significantly lower than UCLs of patients without hyperacusis.

CONCLUSION: Hyperacusis is common among severely affected patients with CRPS related dystonia and may indicate that the disease spreads beyond those circuits related to sensory-motor processing of extremities.

PMID: 17470470 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/17470470