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CESSG Questions & Answers

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Just checking In

Hi fellow Ces survivors. I had emergency surgery in 2010, L4/L5. When my wife allowed my to get back on-line this was the only site I could find that had any info on Ces. I remember Alan, Linda, I think there was a Doug at that time. Well
I check in once awhile to see how my home site is doing. Not sure when Ejenn joined, but she's doing a great job here.
Thanks Ejenn.. I've have some experience with CES residuals, so if I can help feel free to shoot questions my way.

Re: Just checking In

Mark my dear chap!!! nice to see a blast from the past.....I only come on here when that little hint of an idea comes into your head and say's.....let's see if the good old CESSG forum is still alive and kicking......and here it large as life and still here after all these years....Like yourself - this forum was the ONLY oasis of help that was around at that time.....later to be overtaken by some rather grand go getting break away group....well.. I am still loyal to this good old institution ...a lot of water has gone under the bridge with CES....things that would scare the newbie's pants off of them, I am amazed at the variance that this thing can throw at you....I thought it would have settled down to a manageable situation but boy oh boy does it throw the odd ball at you and dealing with it takes the patience of a saint....I, like a few others could write a book but it would sound like a fantasy of the imagination or pure fiction......anyway....I am not on here to increase anxiety levels, just to say "How Do" again and let everyone know that we are still batting on the same playing field.....ejenn still has some excellent tips especially about Therra Beads....I keep mine on the arm of my recliner chair - so easy to zap it in the microwave, the relief is instant and simply heaven....unlike codeine and other constipation (ouch!!) when you use the Therra Beads pad.

Take care, have fun and my very best wishes to you.

Alan:flag-gb: :wheelchair: :tophat: :grinning:

Re: Just checking In

My goodness it is a surprise to hear from one of the earlier members of this forum, back in the days when it was so active a page could be turned in one day. We made some life long friends through the dialogue because we were like a family that understood each other and learned from each other. I do remember when you started posting, I think I posted a reply or two to you back then. Most of the former members have dropped out or joined another site. Like Alan, I go way back to early days and remain loyal to this forum; while I seldom post anymore I still enjoy confronting the challenges of CES by searching out and finding products that assist in daily living or are helpful in dealing with pain. I am currently testing a temperpedic orthopedic seat cushion that aids in reducing coccyx and lumbar stenosis pain. Too early to tell if it is a good enough solution to recommend to others but my long recommended wedge type cushion with cut out is no longer up to the job for extended seated situations. The one I recommended way back when is till as good as new and used in my car all the time but is no longer sufficient for home use. That old devil CEs does keep us on our toes, yes? Too bad we can't have a "home coming" day where a lot of the former CES members touched based once again.

So good to hear from you, Mark.

Best wishes and God speed


Re: Just checking In

I'm so happy to hear from you. I'm glad were all still driving on. I've tried many things, and appreciate the bead suggestion. My guess is most of us would try pickles in our ears to relieve the nasty feeling that won't go away.
Sometimes the simple things work best. I wish I could say I was drug free, but without a Lyrica, Tramadol mix I really don't function well. Besides the meds I have to say distraction works best for me. I have to quit acknowledging the pain and change my focus. Sounds a tad crazy, not a crazy as pickles you have to admit. Great to hear from you and thanks for all your research Ejennings. Alan, great to hear from you my friend I check-in from time to time and hope you do the same. Mark:relaxed:

Re: Just checking In

P.S. One other thing for those who get the electric activity. After almost 8yrs. of trying to nail down what sets them off, I've still have little idea. I'm think it may be related to constipation and trapped gas:thinking_face: Anyone out there that has solved this I'd be grateful to hear it.


Re: Just checking In

Howdy Mark...

Thanks for the reply....Electric shocks I used to describe as the same as touching a cars High Voltage coil and getting that 14k snap!! but in my legs, nasty things when you get them....spasm and jolts seem to go together.

Constipation/compaction....the curse of all sufferers....opiates being the main cause I suppose, slowing down of the bowel mobility and the natural rhythm that moves things along seems to get suspended and then compaction starts and following this discharge of liquids.....what a great thing to suffer from but you try and explain this to others including Medics and they think "Yeah yeah"...they simply have no idea of the real suffering/pain/anguish of not being able to have a normal bowel evacuation, I destroy toilet seats in trying to get body movement to's hard bloody hard and this brings me to your theory about wind/constipation...I had a bout of hospitalisation last year which brought about a colonoscopy where they blow up your lower and upper bowels, not with explosives I might add....but rather with a more gentle blast of compressed air!!!! LoL...Well after they blew my things up they look at the linings for things that shouldn't be there etc...well they found a few pockets that had been eroded through constant constipation and compaction which they identified as Diverticulitis and this adds to the over all things that you have to put up with....No easy answers, more or less how you can deal with things yourself and what you find works....Unfortunately...we are all individuals and suffer in different way's but linked via forums such as this....I think the best therapy is to be able to talk about it, not to family but to fellow sufferers.

Keep taking the tablets and keep a positive outlook and the rest is easy.....I also lie!!!.

Cheers Mark....stay well.

Regards, Alan.:tophat: :wheelchair: :flag-tn: :relaxed:

Re: Just checking In

Mark, you've hit one of the best resources for anyone with persistent pain - distraction; or as I always describe it, losing yourself in something you love to do so that your mind is forced to think of something else. Try losing yourself in a good book, or try counting the stitches as you knit or crochet, or play a video game - anything that forces the mind to think beyond the pain. That has been my long held practice to deal with night pain, the kind of pain that seems to descend when bedtime rolls around. Countless nights find me getting up from bed and going to the computer to work on-line crossword puzzles after I found that the longer you lie there, the worse the pain becomes. (Anything that requires quiet concentration works). I learned to hop up quickly when the legs and back go crazy and work on crossword puzzles until I simply cannot stay awake. Then, if I don't move around much, I can usually return to bed and get a few hours of sleep. That method also seems to speed the pain medication taking hold. Living with CES is a challenge but with a perspective of seeing the glass half-full rather than half-empty, we can still find a lot of satisfactions in life beyond CES. Sure, we have to adapt but hey, if a great grandmother can do it, then it stands to reason that younger "victims" can find a satisfying life beyond CES! I should add that many members used to find venting their frustrations and fears on this forum was also a great help, if for no other reason than you find you are far from alone; that there are people who really get it because they live it daily. Perhaps that doesn't make sense to people who have not personally dealt with all the nasty's that go with CES but it will to most of those who post on this forum! I, for one, appreciate your comments.

So good to make contact with you once again.