FLARE! need I say more?
 

Getting ready to go into Flare mode and I need your prayers. The snowstorm, and all the excitement of having a birthday and finding out that I am going to be a grandma has just started me into a flare....I am worried about getting my refills this week because there is another snow storm on the way AND we are in the single digits...I hardly ever whine on here, but I know you all understand...Love to you all and thank you for all the support..:grouphug:

Have I mentioned you can call me...KWS~!!! The middle initial is stand for whine!! Honestly..i am so sorry for you rush and flare..Try to relax and read, listen to music and mediate anything to counteract your anious feeling... avoid those how make your skin crawl..most of all talk to us... and we'll get thru it together!!!

SO sorry.. hang in there!!

Love, KS..:grouphug:

Cindi
I will cer tainly lift you up in prayer,,Im sorry to hear about your flare,,im in a deep one too,as well as quite a few others who are on this site that i've talked to lately,,,May the lord bless us all and bring healing and peace to us,,,,,bobber,,,,,,,p.s ,,,,,my mom lives in W.Va,,and they are getting hammered with snow for the last couple of days,,,,Stay warm,stress free,and in prayer,,,,your buddy,bobber

I am so sorry. We all feel your pain. I pray the Lord comforts you during this time. Drink a cup of warm (decaf) tea, and listen to some music soothing to you. I found this website... lastfm.com if you put in 'sleep music' it comes up a sleep channel and it has earth sounds.. it is very very calming. I was very suprised. And you can type in any other artists you like. Music has always been calming to my ears, but make sure your body responds in a calming way, not all 'calming' sounds or cds are calming for everyone!!! :grouphug::grouphug:

Hi Cindi, Wow you have been snowed on and snowed on again. It only looks beautiful if you don't have to go to work in it, if you still have electricity, have food stocked, lots of games for the kids, don't have RSD,
rent some funny movies for the kids. turn the fireplace on and have a little Dom, we don't have RSD so we can have it. I would like some of our vacations that I don't have in an album yet, and finish that project-it would be so much fun. Have Michael bluble on and other favorite CD's.
Now reality,could you call in for refill and it would be ready when someone is able to get out? Does the Pharmacy have a delivery service to patients.
Are you presently taking an anti-anxiety med? They work well on the sympathetic nervous system thus lowering pain level. The anti-depressant med like cymbalta does the same-lower anxiety thus lowers pain meds. Some towns have Pick Up and Delivery Service. That would be in the yellow pages.
Take care, I'm staying in, I'm in a flare too Cindi. I have a lesion on the back of my leg, last year I had two and they got infected, bad news. I'm also have hot spots.
I am totally mobile, except left hand got delayed in treatment so have 50% range of motion. But I can type, cut my own food. I'm grateful. I have terrible headaches. My plan is to have HBOT this summer. My Dr. just opened two clinics that each have a HBOT. So saving up for it now.
Hope you get thru this mixed up weather with as little pain as possible.Take care, loretta with soft hugs:grouphug::grouphug:

I feel silly!!!!!
 

I sure feel really silly asking this..but can someone explain to me exactly what a flare feels like????????????? I am trying to pin point what it may be but my RSD pain is constant and continual..same heightened mean pain with the hot/cold temperatures never ending..Ole' KS need some straightening out.....I am RSD totaled!!

luv, Kathy:grouphug:

Well, it pretty much, to me feels like, all the little symptoms of RSD that you have magnified by about 100% plus...I stiffen up...I hurt, the blood pressure, goes up, I burn from the inside out and of course my main source of injury goes nuts...stinging. burning, pain shooting through my leg into my thigh and then I get deep bone and muscle ache...during this time the heating pad is my very best friend....these are just some of the symptoms that I have, but they have been know to change...I journal a lot, so I can go back and see what has cause a major flare....sometimes when I get really excited and happy, I go into "mini" flare mode where everything burns and hurts until I calm myself down....hope this helps:)

Thank you...Cindi..
 

Okay..loud and clear..you did great clearifying what a "flare" feel like.. Thank you!! And please..please..not to minimize anyone's pain here but I wonder if that is why my Dr. has classified my RSD as so aggressive RSD and why I didn't know exactly what a flare is because... I always have to burning..deep bone pain...stabbling knife pain to the point of pouring sweat all over my body cuz it hurts so bad... I am a nut..so stubborn not letting it break me down.... not being able to take any meds.. makes it worse as I always grit my teeth and try to stay in a good mood... ain't easy!!!

I am sorry for your pain and I hope today you don't suffer any flares..or for a very long time for that matter!!!!

Hugz, k :hug:

Kathy - it sounds like you live in a flare - I'm so, so sorry.

What is the date of your appt with Dr. S? Hopefully it is less than one month away, so you are counting the days. Is this your first appt with him? Or are you already lined up for treatment? Do you know that you are going in for a certain ketamine treatment when you go to Drexel in March? Have you tried any other treatments so far - like blocks or lidocaine infusions? How did they work? How about PT or OT to keep things moving?

There is a lot of evidence that suggests that aggressive PT can help RSD. My RSD spread to my right leg last year, but I have never stopped moving (I walk as many miles a day as the cold weather permits) and it remains mobile (but really painful). Of course, my original injury wasn't to one of my feet, so I am not walking on a neuroma like some other RSDers would have to do in order to stay mobile - I wouldn't want to say that I could do something as incredibly painful as that might be...however, the motto is "use it or lose it."

One thing that I have a real problem with because of the chronic pain is my blood pressure. Have you had yours checked? In the absence of meds yours could be out of control because of your pain - just be careful.

Have a good day - the sun is finally shining..hopefully my head will stop throbbing soon..hopefully...

Peace, Sandy

Hi KS!

I feel exactly like you and many of us feel! I live in Maryland and we just got another blizzard yesterday. It's snowed more this winter than in the past ten years combined! Set new record for all-time highest amount of snow...ever! AND, lucky us, another storm coming next Monday!!! AHHHHHHHHH!! (And I LOVE snow!).

I missed my pain doctor's appt., cuz they got hammered too (Philadelphia) and I will run out of pain meds, therefore I will have to resort to my vicoden, which I am allergic to and make me vomit. Gotta pick the lesser of two evils; agonizing pain or puking! (sorry to be so graphic.)

As far as pain goes, for me anyway...Deep burning in my RSD leg, agonizing muscle spasms, shooting pain, bouts of sweating/shivering, one inch of atrophy, extreme burning (like a jellyfish stung me), piercing jabbing jolts of fire. 24 hour a day, 7 days a week. My husband says that I even cry in my sleep.

I am very sorry that you are going through this. BUT, everyone here is very kind and caring and sympathetic (get the joke?). I have made many wonderful friends here and so will you. One friend has not heard from me in a while (bad flare from snow) and PM'd me just to check on me! Now that's friendship!

Oh, and HAPPY BIRTHDAY! and congrats on being a Grandma!

Hi Cindi,

It sounds like you have some great news too! A new Grandbaby, how wonderful. Your birthday is a wonderful celebration as well. Focus on the beautiful things while this is happening. I am sorry you are hurting and I will also lift you up in prayer.

Stay warm and take some epsom salt baths .Have you tried some yoga stretches. There is a dvd out there called am/pm yoga, It is just small stretches nothing tremendous that will hurt you. I love the one with the Asian man. It is very gentle stretches. The other one is a more advanced stretching it has a lady I can't remember if it is the am/pm one. You can buy it at Target or Barnes and Nobles bookstore.


My prayers are with you,

:hug:Sandy

Hello Sandy and Kim.....
 

So nice to hear back from you both..Yes,.. My RSD has never ever stopped or lessened in the 3 years I have had it..Of course, I gotx the SCS unit and now it has spread... Yes, my Blood pressure just today was 134/84.. it does travel as low as 50 on the bottom also.... I too have whole body sweats then turn cold instantly...and I have had 4 out of 5 nerve blocks.. medications..two arms length which I had to stop taking and now I am on nothing cold turkey as I is just too hard to be sick too.. I had accupuncture.. I was told I am too far advanced for the oxygen chamber...(HBOT)and now off to Drexel with a "rush" stamped on my forehead...in March the 15th.. This is only a consult to see Dr. S and what is possible for me...honestly..I am having lots of trouble wrapping my heart around this step..maybe I am getting tired of the whole RSD game..or possibly the travel and $$$ it is going to take, I don't know... Anyway... I say the I am okay..and Iam okay.....I hurt, as everyone does...I just get up and try again each day... Oh and I never cry...some reason..I just can't do it...

Kim, how long have you had your constant symptoms?? Sandy, I am so happy you go in and out of flares....

Much love to you, my special friends!!! And thank you for allowing me to spew!!!

Kathy:grouphug::grouphug::grouphug::grouphug:

HI CINDI, That describes pretty much me during a flare. I may get a couple lesions-which last year got infected, takes a long time to heal and hurt -I can't even describe the pain of cleaning them. Last year I said if I get another one I'll go to the hospital. Do you have full body or generalized? I was diagnosed that 6 years ago. I've had this 15 years. I also have the intense heat from the inside out ,lots of sweating. I can't even think about a heating pad during the pelvic heat which is really everywhere. I'm going to address this next visit to my neuro and gyn and internist.
Are you on any anti-anxiety meds? I take Lorazepam 4 1mg a day. they help a lot. You know hot tubs are not good for us. too hot. How long have you had this? How did it get started etc?
I used to have the jolts,jerks, electric shocks go thru the body thru my brain. Would scare me to death. During sleep my head would jump right off the pillow. He put me on 3200 mg of neurotin. I hated it but they stopped. If you are on that watch your weight gain. I did change to Lyrica 400 mg. it seem to work better with the pain. I slowly went off and don't have the jerks any more.
Do you have a foot tub with jets? that with warm water and epson salts helps the bones! So does the Warm Waxing of the hands and feet. you put the plastic sacks over the hand and feet and then in the soft towel gloves and when it cools it peels right off. That helps the bones too. You can get both at Wallmart or Discount cosmetic stores.
I forgot to look where you live. I'm in Arizona, so the winters are nice, but the summers are terrible, especially since I went internal pelvic region. That's why they changed the name from RSD to CRPS. The word Regional applys to the burning pelvic region.
Well, I hope you are knee deep in snow. My son in low left this morning for Chicago for his 4 day shift of flying in the north northeast or Dallas. He had a lot of flights he couldn't do last week. Really cold in Chicago.
Take care, your AZ buddy, loretta with soft hugs:grouphug:

Dear Cindi1965,
It sounds like you are having a meltdown for sure which we all have all the time so you are not alone. When I get like this I go into my bedroom and close the door and turn out the lights and cry. I call it my time out. Sometimes I may not cry but just being in the dark and having it quiet is calming for me. I stay there for as long as I need to and then come out and I feel like a new person. Sometimes I will lie there and pray and it does relieve some stress. I will keep you in my prayers tonight.
Take care,
kathy d

I can so relate to all the symptom descriptions and mental strain. Keep smilin I can really relate about the traveling and $$$ for docs. I am so drained and may be doing it again. At this point I don't even know how to feel or think.
Kim could you call your doc who rx your meds that you will run out of and ask if he can call you in even a few till you get it in?
Cindi congrats on being a grandma. I wish I had more answers and relief for you. I know how life factors increase our pain. So many natural things that cause of us pain. I hope you get through in the best possible way and better times come ahead asap.
Sending warm and pain free thoughts to all

Yes, I do take Xanax for anxiety meds and they do help...I thank you all for the support. I have been pushing through and doing my PT and then I found the last.fm station, listening to it with the lights off. I refuse to let RSD take me down. One good thing is that my kids have been at their dad's and my hubby does a good job taking care of me.....so far on my Wii Fit Plus I have lost 7.5 lbs by just doing the balance and concentration games...my favorite is the ski jump. I am feeling better to day so I am getting on the board and do some concentration games, later

Also, I got great news about my SSDI....I got in touch with Senator Jay Rockefeller's office through my local state Delegate and it looks really good that I am going to get my case through.....people don't think of getting in touch with politicians to help them with WC or SSDI...don't give up:circlelove:

Hi Cindy,

Sorry to hear that you have been in a flare:hug:! I hope you are feeling better now and that the pain has lowered. I do understand what you are going through, I fell last Saturday and tore all the ligaments in my knee (had to go to hospital yesterday because of it) so it has been extremely painful lately!

Thinking about you and keeping you in my prayers,

Alison

Miss Allison, where have you been? Your positive little spirit is what drew me to this board...I am soooo sorry about your ligament, I hope that you feel better soon.:hug: