Just not having a good day
 

How is everyone else's day going?

I really hope that everyone is feeling better than I am- the weather in the DE/PA region has not been the greatest (rainy, humid, breezy), and has totally set me off. I had to go out last night to do errands (my mom took me to fill my meds, and got me something to eat. When I am with her, she always makes sure to get me something to eat, because she worries I am not eating enough).

Being out in the rain and gusts of wind set me off terribly, and now I am pretty much in bed for the rest of the day. I was going to fold clothes, but I just don't have the energy/am in too much pain. These are the days that it really sucks.

Out of curiosity, what are other triggers that everyone else has experienced besides cold? For me, it's water, cold, blowing air of any kind, touch, and the bedsheets. We have come up with many inventive ways to help beat the triggers- thick hiking socks, warm UGG (or the like) boots, Scuba booties and pants for swimming in the water. What have you done to help you? Any other suggestions on what I can do to avoid these triggers?

Anyway, just wanted to wish everyone else a pain free day- I really hope everyone else is doing better than me.:(:(

Hi Brittany,
I'm sorry you are having such a painful day. I do understand. I live in PA and the weather has been crappy. I have all the same triggers as you do but anything too hot also sets me off. The thing that does not bother me yet are my bed sheets. I had one episode of pain with them the other night but so far that is it. I use all the same things you do to help. I actually brought my Uggs 1/2 size big to wear slipper socks with them. Unfortunately, I don't remember what it feels like to have a pain free day anymore. My amount of pain seems to be growing. Well enough of that, my complaining isn't going to make you feel better. Try Chocolate! Hope this weather breaks so and you feel better
Hopeful:hug:

Brittany and Hopeful,
I'm in PA too, and it is a Nasty day!
It's not cold driving rain or snow, but, it's a low barometer. I notice that I feel worse when the barometer is actually falling, rather than when it's just low.
I have no clue why, but I'm actually feeling kind of good today. (I've made some homeade iced tea, and have had two glasses, yum). I don't usually tolerate caffeine well. (I'm starting to shake).
I figure I'll pay for this later, but I'm cleaning and doing wash, and looking forward to scrubbing myself up fresh now.

I'm listening to a "genius mix" on iTunes9 (get it!), and it's giving me lots of Jimmy Buffett in this mix, which, always reminds me of the FLA Keys, and I smile!

I want to send along some "feel Good" Vibes, to you, and Anyone who's not up to themselves today.
I know you need 'em too, DEW!

Feel Better !!

Pete

Brittany
 

Just wanted to say i hope you are able to have a better day tomorrow. When I am hurting it is very hard to make my self do it, but if I run an epsom salt bath it always help immensly. It has never let me down. Feel better , cz

Thanks everyone for your awesome vibes.

Hopeful- I did the same thing! I only have one pair of actual UGGs, but the pair I have are the "heavy duty" Ultra UGGs, which have really soft lining in them. When I went to get sized (they were a birthday present), the sales person thought I was nuts for getting them larger! I have actually started buying the Minetonka's that are often at DSW- they are the same quality, a little cheaper, and do the same thing! Just a suggestion :) And yes, chocolate makes everything better, especially dark chocolate...yummm!

AintSoBad, I have never actually paid attention to whether the change in barometric pressure makes a difference- I will have to check that out. I am actually listening to music on iTunes of some of my favorite feel-better-pick-up music (gulp, I am actually listening to Spice Girls!) while I type on the computer. And fresh homemade Iced Tea is so good! My dad's family is originally from the south, so I grew up with homemade sweet tea...love that stuff.

CZ, I will have to try the epsom salt bath. We don't have any right now, but we will pick some up the next time we are at the drug store. I have a whole bunch of yummy smelling bath melts/foams/bubbles, because my fiance knows I like hot baths after a horrible day to help me relax to get to sleep, so he gets me all sorts of them to try. My favorite right now is the 3-in-1 Buttercream Cupcake from Ulta...oh it smells so yummy and good!

Man that tea sounds good Pete! And that bathwater sounds good enough to drink with a straw too! MMMMMM Buttercream Cupcake!!! :D

Im with Pete with the barometric pressure, it starts hitting me hard once it starts falling. But once it kinda levels off so does my pain from that, although the cold, wind, icy conditions do keep the pain coming. :(

We are having a mini heat wave out here in Ca, it is supposed to be around 94 today, and be near 105 by the middle of next week! Summer just doesnt want to let us go. The heat messes with me too, makes me feel light headed, dizzy, and generally bad all over.

I just hope we dont get robbed of the nice 70 and 80's before the cold sets in, now that would be a bummer LOL!

Maybe if I think hard enough I can force some of this nice warm weather towards PA. After all that rain you can imagine your in the tropics! :grouphug:

I'm in northern NJ and I'm with you guys with the weather. It was a miserable night last night. Had to see the pm dr today and he increased the Lyrica. He is also considering differnt meds but will wait till next appt. Epsom salt bath is so nice on these days. I had been thinking about the radio frequency ablation that the IME dr recomended and decided against it right now. Just seems like the risks outweigh the benefits. Feeling pretty bad, my daughter plays in the HS band and had their first game tonight. I just can't handle sitting there with the cold but would love to be there. Somehow I am going to get some sort of life back....I can't live like this. I am so mad that this is happening.

Hi Britt
triggers for me are stress,,,,and lack of exercise,,although doing exercise is painfull before and after,,it yields in the long run and also helps to desensitise the affected limbs,,when the water changes from me being in the pool and then hit the rinse [warm shower,,my feet and ankles turn blue and black like a lava lamp,,,soaks are good,and music helps me,,xanax when needed,,im trying to stay off the oxy,,,,and as for the tea,im a big fan of sun tea,,,ive got a gallon in the fridge,,,,,may you all, have a painfree nite,,,,ps britt,,as ive posted before,,i agua jog,,it helps and any type of exercise will push the beast back into his cage,,much love to all,,,,,,,,,,,,,boyd......oh,,most of all Pray to the Lord Jesus

Bedsheets hurt you???
 

My Dr. wrote me a script for a "tent" ..it's a lift that you place under your top sheet of your bed to keep the sheets from touching you...Ever heard of it:confused? It is very helpful for who have a sensitivity to the sheets touching our bodies.:winky:

What a week I've had
 

Hi all..I too am in PA and the weather here has been crappy but it's getting better now. It has been absolutely crazy weather. Awfully chilly for this time of year. I wasn't ready for it yet! The cold and I do not go well together and I'm sure most of you can relate. I also don't do well when it's damp. I too have issues with the barometer. When storms are coming through and the weather is changing..I KNOW IT! I can feel the change and I hurt all over! I get in a huge flare and I was told that it's due to the barometric changes..it totally affects RSD patients. Lucky us!

Right now I'm in a huge flare this week. It was a beautiful day last Sunday and hubby and I decided to head to the park for a festival that was going on. We were there a whole 10 minutes when I got stung by a bee while walking along. Of course I'm severely ALLERGIC to bee stings! Yea, UGH! I was stung on the right arm of course (my bad arm) by a yellow jacket. My husband knew this was NOT good! He started to assess the situtation and told me "not to panic". I didn't have a purse with me so I didn't have my epi pen..oops! I was trying not to panic but the pain started coming on..OH MY then my heart racing. I started feeling dizzy and he had to help me walk to a picnic table to sit down. I remembered I had an inhaler in the car and at this time I was having some trouble breathing. I was starting to wheeze and cough. Hubby went to the car to get the inhaler and a woman sat down next to me. She saw I was having trouble and I told her what was going on and she had a friend run for help. I told her my husband was going to the car. A Sherriff came running over calling for first aid help. At this point I was coughing and wheezing pretty bad and my entire body locked up and was in burning pain. I couldn't move. She was trying to get me up and told me that she wanted me to "walk to the ambulance" . THe woman next to me was telling her not to move me and bring the ambulance to me. My husband then saw the ambulance heading in my direction so ran quickly because he knew then it was ME! When he got to me they had brought oxygen that was doing nothing because my airways were closing up. He said I was incoherent and he tried handing me my inhaler but I couldn't move my arm or respond to him. He did it for me. I don't remember much of what happened from then on. I was put on a stretcher and into an ambulance. Then rushed to the hospital. It was NOT the day I had planned! The medic in the ambulance administered epi and 2 nebulizer treatments and an IV. He had a rough time but got me stable by the time I got to the hospital. I was monitored than released after a while. They discharged me forgetting to put me on prednizone..yea ...not good! By Sunday night I was itching like crazy and still having trouble breathing. Monday I was using my albuterol inhaler like crazy and my lungs HURT! I still itched so I called the allergist first thing Tuesday morning. He couldn't believe they sent me home with no medications or instructions. I have been a mess! I'm feeling better now but still itching and having some trouble with breathing here and there. I've had a crappy week. I haven't slept good at all. My nerves are going crazy! I went to the grocery store yesterday and wanted to cry! I had to pretty much run through the store and trying not to freak out because it was so darn cold in there! I don't know if I'm coming or going!

I'm also upset because the Dr put me on Cymbalta in June and I have gained weight from it. I was doing so well before all this mess. I was at the gym and had lost 10 pounds. Now it's all back and then some. I can't exercise either. I tried and it flares me up so bad. I can't handle it yet.

Good news is ..I have been cleared for Ketamine treatments which should start soon (I hope). I just hope it works. I want some of my life back.

I have started a blog if anyone is interested...

http://updatesbytammy.blogspot.com/

I'm trying to keep myself busy and the blogging has also helped. I can't always sit at the computer though which makes it tough. I do what I can.

Hope all of you are having a better day and looking forward to a pleasant and relaxing weekend!

Hi,
 

In Colorado, our weather has been crazy all summer. May was rainy all month, June leveled out and July was ok, but we only saw 2 days the whole summer that was over 100. Highly unusual for us. August was rainy and cold. I actually used my heat two nights. We are already seeing trees turned completely. They started turning in August.

The change in the barometer does a job on me too. Because the summer was not too hot, I did pretty good. I can't stand the heat anymore then the cold usually but this summer was ok for me.

Today, it's cool out, I was actually trying to decide wheather to wear shorts or long pants this morning. It will warm up a lot though later on in the day. In Colorado, you have to carry long pants and a coat with you at all times if you are traveling to the mountains or to Colorado Springs. The nights turn cool.

Bobber, stress and lack of exercise is bad for me too. I have a treadmill that I use. I can't walk in the heat nor the cold so I use the treadmill.

Brittany, I do hope you start feeling better. Hopefully the weather will change to good for awhile anyway.

Ada

Oh my goodness! I was going to post the same thing too!!!! I live in the Eastern Panhandle of WV and the weather has been nasty here too. Also we have had a lot of family stress as my SIL is 30 weeks pregnant and in the hospital for pre-term labor and severe high blood pressure. They are trying to keep the baby in as long as possible. I have had a hard time sleeping and between that and the weather, I pray that I am not going into a full fledged flare. Have wonderful weekend....I'm getting in a tub of epsom salts!:D

Hi Everyone,
I was wondering if those of you who are living in PA have been having a rough time lately. I have been really bad since last week. I am still working and it is really getting to be an effort to make it through the day. I have had full body RSD for about a year and a half now. Unsure what caused it. Had a bad back injury 15 years ago and walked on my toes for about 2 years it eventually healed with seeing several differnet drs. and a chiropractor. He is the one that eventually helped me. I also was an exerciser for many years and had a stress fracture and a tear in my miniscus ab ut 2 years ago. RSD started about 6 months later. My doctor seemed to think it was from the injury 15 years ago.I am getting the ketamine treatments don't have another RX until 2nd week of Nov. I take Nortryptiline 100mg at bed and Tramodol 50mg for pain. I have a script for Vicodan which I hardly ever use. Mostly because I am still working and can't take them. I tried Neurotin and Triliptal and I couldn't get to a high enough dose to be effective before the side effects were too much for me to handle. My neurologist at the time said my levels were toxic. I don't know if I need a change in my meds.
Ok after all that rambling Just want to know if anyone else is having such a bad week.
I am so frustated I could scream. The pain is just too much to handle lately.
Hopeful

Hi Hopeful

I too am in PA and been having a rough time. The weather has been changing so much and that sure doesn't help anyone with RSD. The humidity went up the last couple days once again and that made me just miserable. My neurologist said that RSD patients do not tolerate temperature change well. That's a definite! I seem to do best when it's in the 70's with no humidity. I can't seem to tolerate cooler than that or warmer than that. It's crazy. I have been having trouble with everything these last few days. My headaches are severe, the pain is high and my vision is off, etc, etc. My back is killing me and they even sent me for another MRI the other day to check on that since I had back surgery last year and it hurts around the same area. I can totally feel your pain as I am feeling the same way.

I am now scheduled for my first run of ketamine treatments next month and I am also pretty nervous about that. I am hoping this is going to work. I'm just pretty scared about going through the treatment. I'm so tired of taking all these meds though. I am on neurontin, cymbalta, fioricet, baclofen.

Hope your weekend is a little better but rain is on the way for Saturday and we might be pretty miserable. I know rainy days are not good for me and it looks like wet, cooler days are ahead..yippeee....want to move to Nevada? lol
Take care
Momz

Remind me to never move to Pennsylvania! :D I was in Philly for a conference three years ago, and we had a cold rain for all four days. The locals tried to convince us that it is not always like that, but after reading all of this, I am not sure...;)

Hope everyone is doing better. If you want, visit Wisconsin. We are having a great Autumn!

Mike

momzpeachy: I am having the same problems. I used to be able to say that mornings were my best time of day but lately I am only sleeping 2 1/2-3 hours at night and get up feeling horrible. My arm has been so swollen lately, my fingers look like sausages. The tremor is worse and it jerks constantly. It will get better during the day if I don't do much but then bad again at night. I am in northern NJ. I love the fall (ussually) but I am so worried about winter. As it is I have to keep my arm covered all the time and I find I have to keep my hand covered too now. I wear a glove some days. I feel stupid wearing a sweatshirt and glove on an 80 degree day.

Sometimes I have an attitude that I am going to push through and do something to get back some sort of resemblance of what my life used to be like even if I pay for it later. It would be worth it. Then other days I feel beaten. I want a purpose in life. I am wc and can't do what I was doing before so now I am waiting to see what wc will do. My kids are afraid to hug me. My husband doesn't say too uch but I know this has put alot on him. I feel so bad seeing what this is doing to them.

I can't do more than agree, with my friends from PA.
It is a great state, but, we certainly do have 4 seasons! (Often with 3, in one month).

What was it that W.C. Fields said about Philadelphia?

My past two days have been heckish.
Aches, Burning, sleep reversals, and, can't even get anything done. (I'm praying for enough relief to get a bath/shower..

I don't think any of us are loosing our minds, but it is awful to feel, and read how we can't do what we once did, and this ever lasting search, for our new identity.

Maybe, it's just that we need to look at it as we've been given a new, unexpected path to travel. We need to learn to navigate it, as we go?
God put it there, he'll certainly lead us through. (What's it? If he brought you to it, he'll get you through it!)

I hope and pray, that all might feel some relief, before long, it IS Friday, afterall!

Pete

Hi Momz,
I am sorry to hear you are having such bad pain. At least I know I am not crazy it must be the weather. Like you, I am not able to tolerate anything too cold or too hot. I hope your MRI results come back ok.
I understand what you mean about taking the meds. I have an appt with my neurologist in Oct I am hoping he might change my meds because I don't think they are working as good as they use to. Or else the RSD is even getting worse.
I know it is easy to say not to worry too much about the ketamine treatments. I was really scared before I had the first ones. They give you other meds to counteract the side effects. Your pretty much wiped afterwards but they weren't that bad. If you're going to Dr. Schartzmann he is great and the staff in that unit are also terrific.
I did get some relief. I haven't had a treatment since the beginning of Aug. My insurance decided they are not paying and I am fighting them. I paid for the last one myself, unless I win the 2nd appeal, I will pay for the one I have scheduled for Nov.
Hopefully, once we get past the rain this weekend things will get better. I hate to say this but I am dreading the winter. Have a great weekend. At this point Nevada sounds good!
Hopeful:hug:

Hi Pete,
I tell myself often God must have some plan to send RSD our way. Somedays (lately) I just wish he would show me what the plan is. I, like you, am searching for my new identity. I am having a really hard time finding it though. I was always so active and then RSD hit and has quickly stopped me in my tracks.
You are right PA is a great state and other then not liking winter I never thought too much about the seasons. I grew up here.
Thank God for Fridays!!! I hope all of us get some relief after the rain this weekend.
Hopeful

Hi Momzpeachy,
I'm so sorry you're having an awful week and that bee-you sure didn't need that in your life. I react like that with shrimp, crab, and lobster. It happened out of the blue, but made it to hospital in time like you. scarey!
Sounds like you have a caring, warm husband. Glad you found us too. Did you post on introductions- I'll look. See how you got this monster and how long. It's been 14 years for me-full body, following surgery. Wasn't diagnosed for 4 years.
I live in Arizona, the winters are nice, but summer is awful with heat and monsoon season. We moved here 12 years ago from Oregon. Didn't know I had RSD then, but glad we live here than rainey Oregon. Our good friends visit us every year, so we are grateful for that.
Isn't that weight gain maddening. I've always been thin, very active in sports, and this weight gain from meds is awful. I quit neurotin 3200 mg a day and lost 30 days, then went on a Cymbalta and gain 10 back. I'm determined to get it off and 30 more.It's hard when we feel to bad to exercise. Do you like to swim too? That has kept me mobile. I only have one limb paralyzed-left hand.
I like the internet too, The laptop is the easiest. I can't sit or stand for long periods of time. I think my right hip is giving out. I'm 61. My husband, daughter and son-in-law are a wonderful help. Oh, and my kitty. She is always with me. a furry maincoone cat 10 years old.
Please take care and hope each day gets better for you. loretta