There is life after CES

I had all the red flags after an injury whilst out running as a very fit 46 yo. Pain in lower back, left quad felt numb to the touch, but as though a hot iron was on it, 'electric shock' pains in ankles, hardly able to stand up as leg kept giving way, leg muscles jumping and rippling. Drs. service at local hospital said it was a bad hip.

Knee to top of hip in spasm for 72 hours. Trip to own Dr. the next morning received opioids and (I later found out) the note "too much pain to diagnose!"

Lack of urination, slight dampness, no feeling of needing to defecate (regular 7 day constipation and seeping for 6-8 hours afterwards), and saddle numbness, all took a few weeks to become noticeable above the pain. (Drs. complete note of my visit "constipation - diet", no mention of urine, seeping or numbness issues at all!)

It took multiple visits and 17 weeks to convince Drs that it was my back, then MRI and consultant said "no exercise unless you want to end up in a wheelchair!"

+6 months MRI, by which point the pain was already significantly better (I guess because the bulge had already lessened considerably. Only the displaced vertebra is evident on the +5 years MRI).

It was 6 months before I could walk without a crutch (as leg kept giving way) and 12 before I could walk properly (right foot can still droop if I do not wear boots.)

After 5 years I did try a little light exercise and lost the remaining sensations from urination/sex/bladder. This was when CES was first mentioned and I looked it up and saw all the red flags were originally present. I then requested my notes, most of which seemed to bear absolutely no relationship the discussions during my visits to Drs and consultants, even the ones where I was accompanied (and so had a witness) and included treatments that I did not have from a Physio!

My life and friendships before CES were all based around exercise, so this was a huge loss to me and a new Dr. reckons that I have been suffering depression since.

It took me 6 months to learn how to ignore the initially 10/10 pain (previously broken arm, broken leg and shoulder rebuild were 3/10 for comparison i.e. no painkillers).

6 months to habitualise bladder and stool functions enough to hide the issues.

12 months to walk reasonably.

4 years for muscle rippling to become unnoticeable (unless placing hand on it)

The lack of exercise did lead to Diabetesunder 18 months, but to an outside person you would not know about my CES now at 11 years on.

There is always hope for the appearance of a normal life. 😃

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