Iolanda: My Pain Story

I’ve had 3 episodes that have led to very significant and untreatable chronic pain.

Apologies – I may sound vague below but that’s just because with the diagnosis comes pretty significant memory loss so I don’t remember anything about that period, or in fact very little if anything that happened yesterday.

The FIRST  and the worst is neuropathic pain that has come with a diagnosis of encephalitis.  I’ve had damage to both temporal lobes, brainstem, thalamus, hypothalamus, posterior midbrain and regions of both frontal lobes, part of the lateral ventricles however some of this went down with treatment.  I’m thinking that although the scarred cells might not be showing up as anything much in MRIs now there is probably still some type of scarring there anyway causing me so many unresolved problems  (over 20 medical problems still exist)   I’m pretty sure that my central pain is from the damage to the thalamus.

The SECOND is widespread pain that I was diagnosed with in October 2003 when I really strained my arm using a rotary cutter.  What that means is that I have what feels like really really bad Fibromyalgia and heightened sensitivity to pain.  It’s just sore joints and muscles.

The THIRD is daily headaches that I’ve been experiencing each and every day since at least 2003 sometime.

Specifically about my neuropathic pain diagnosis …….

Basically they said the area in my brain which interprets pain is damaged.  It’s difficult to treat this pain because it’s in the circuit of cells around the body

–    Neurotransmitters are inflammed and damaged – the disturbance is in the neurotransmission rather than damage to the nerve cell itself.  This isn’t able to be proven by tests   ie,. misinterpretation of my body signals by my brain
–    The brain interpretation of the circuits of cells around my body is damaged
–    Lowered pain threshold

They said that even if pain related medication were to work, it would probably only reduce my pain levels by 30 – 40% anyway.

I was diagnosed in November 1997 however the pain didn’t start until about 6 – 12 months later.

It started out as “tingling” however after ?  time it worsened until it became a constant burning pain that happens all over my body but mainly on my extremities, especially my legs.  So while I’m sitting and typing this I can also feeling burning pains in my hands that feels pretty bad because I’m “exercising” my fingers and hands with the typing.

I’ve been to a very reputable pain clinic here in Sydney but they were unable to find any meds that could help me.

So far I’ve tried these and none had any effect or else side effects were too bad –

Tryptonal – up to 150mcg
Neurontin/Gabapentin – up to 1,200mcg
Zoloft anti-depressant – dosage made me too spacey, too hungry and neutral mood
Zyprexa – 2.5mcg – stopped because of severe physical fatigue
Tramal – 200mcg
Neurontin – up to 2,400 mcg – actually “phased me out”
Prozac antidep.  (Fluoxetine) – up to 2 x 20mcg  tablets – side effects too bad – including anxiety, concentration problems and increased urinary needs
Avanza antidepressant – helped pain but hunger was astronomical
Effexor – 225mg

I’m still taking the Effexor because whilst it doesn’t help the pain much, if at all, it helps me with my metabolic disorder

Things that make my pain worse

–    physical activity
–    tight clothing – so I wear loose and soft clothes, no bra and no jewellery
–    pressure on my legs when I’m in a sitting position – so I end up using foot stools when sitting on a chair, and lifting my legs when on a recliner
–    sometimes it’s bad enough that I’m unable to “distract” myself in a fulfilling way
–    constipation – pushing faeces results in incredible, horrific pain in my legs for the rest of the day.  Unfortunately I suffer from serious constipation so I’m regularly faced with absolutely horrific pain at least once a week.

Things that help

–    Psychological stability – happiness
–    Elevating my legs and being able to stop them pressing on any surfaces (chairs, lounge etc)
–    Using an electric blanket – even in summer! – the heat somehow helps to “mask” the pain – however my feet are too painfully sensitive that the heat worsens the pain and so I am always sticking my feet into the cool edge of the bed or out of the blanket.
–    I use flannelette sheets because they don’t get “cold” like cotton sheets.  Cold sheets give me a cutting pain.
–    In summer my feet feel bad enough that I use a cool-pack to try to “cool them down” because the burning pain is so intense.
–    It’s psychologically helpful to know that there are others that face similar problems – that I’m not “alone”


Ursula Pegg

Ursula Pegg

Please read Ursula’s poetry about CPS.

I am Ursula, 83 years old.  i had a hip replacement in 2004 on the right side, which i call my good side.  the left side is affected by thalamic pain syndrome, also referred to as dejerine roussy syndrome [ed.: also called Central Pain Syndrome].  even many neurologists are not familiar with the syndrome.  it is here to stay with me until i die and was acquired when i was 63, the after effects from a very mild thalamic stroke. all the pills i take only take the edge off the pain.  there is no known cure. it gets worse, as the years go by, and it also affects wider areas on the affected side.  the early focus of mine was the left axilla and the surrounding area, spreading on select areas down the arm and hand, and slowly creeping down the left side into the leg and down.

my neurologist gives me most of the pills i ask for.  i would have been lost through the years if it had not been for the cps alliance correspondence, from where i got most of my ideas of what works and what doesn’t.  i am also a “googler” and research the stuff i take.

in addition to the left hip, my left knee is bothering me quite severely. i hope I can relieve this without a knee replacement, which i would not consider at this time.

at the front is gabapentin, which i have slowly titrated to 3,900 mg per day.  it has no upper limit.

  • i take one lotrel 5/10 for my bp and some cinnamon in the a.m.
  • i take 1-0.5 mg alprasolam for sleep in the evening
  • i take 2 NORCOS a day – they do not offer much pain relief.
  • i take one baby aspirin daily.

i have been mostly housebound.  i read and write a lot.  i have written a lot of poetry.  above all, i have tried to put the suffering of cps into rhyme.

to come to an understanding of the often misdiagnosed syndrome, i have written poems about this suffering and the way it affects our lives.  if you ever have time and, of course, interest, you actually might enjoy the poems giving a broad understanding of what ails us.

cpsfboard, CPSsufferer

Becky Brandt

Becky Brandt

Hi, I’m Becky Brandt. My CPS started 6 years ago after a severe case of Shingles damaged my nervous system. After trying numerous medications and holistic treatments, I found that my best relief comes from oral narcotics, antidepressants and lidocaine patches and cream.  I have completely modified my life to avoid CPS triggers like stress, loud noises, bright lights, tight clothing, heat, cold and vibrations. Other triggers, like changes in the weather & barometric pressure, cannot be avoided and so I have some terrible days where I just try to exist.

As a Nurse/Educator, I’m committed to providing quality CPS information to the medical community, researchers, patients and caregivers who deal with this menacing condition. It is my belief that the CPSF will play a huge role in finding a cure for this disabling disease.


Jim Fennell

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Read Jim Fennell’s Poetry

For those of you that don’t know me, my name is Jim Fennell. I am 58 years old and suffer from CPS.  In my case it was a spinal cord injury resulting from a broken neck.
Aug 20 2007, I woke up paralyzed in the floor of my rv and could not remember why. I finally got rolled over on my back and saw that it was 2:45 am. My left side was completely numb and paralyzed. I had full use of my right arm and some use of my right leg, but I don’t recall any feeling. I was about three foot from my couch, and knew my cell phone was on the shelf behind it. I managed to get spun around and started to drag my body toward it. My television was on, which seemed strange because I usually turned it off before going to bed. The miracle heeler Benny Henn was on and all I was thinking about was Larry the Cable Guy story about him. ” No wonder people get out of their wheel chairs and walk off, Benny is hitting them in the head.” I wanted to turn the television off as bad as I wanted to get to my phone.
When I got to the couch , I realized I could not get up on it. Luckily I had a small ottoman in front of the couch and got it pushed up against the cabinet the television was on. Using only my right arm, I managed to get my body pulled up on the ottoman. Ahh, I can reach to turn the television off. I then pulled my legs up under me, hoping I could roll over on the couch. Pushing my body up with my right arm trying to get high enough to roll over on to the couch, I lost my balance and fall the opposite direction and ended up in the floor on my back again. I finally  get my body pulled up on the ottoman again, my legs pulled under me and tried to roll onto the couch again only to have the same results. I don’t remember how many times this happened before I finally managed to get onto the couch.
Now laying on my back on the couch, I realize I can’t reach my phone with my right arm from this position. I need to be turned around with my head on the other end to reach my phone. While trying to get myself spun around on the couch, yes, I wind up flat on back in the floor again. But, Hey, I got this, I’ve  had lots of practice. I manage to get back on the couch, facing the right direction on the first try. COOL, I get my phone and call for help and it’s only 7:30 am.
With no memory of what happened, the EMTs diagnosed a possible seizure and stroke. This is the first I know of rubbing all the skin off my face in the carpet with a seizure . It’s also when I find out that my right knee is rubbed nearly to the bone.  Now 6ft 4in, 250 pounds of dead weight is quiet a task for these two medium sized technicians to get on a back board, out of a small RV door, down the steps and loaded in the ambulance.
Shortly after arriving at hospital , they started running test for a stroke. After three more days testing, they can find no sign of a stroke. Since I had been drinking the night of the fall, which was not uncommon for me to come home and have a few drinks to relax before bed, they diagnosed me with a alcohol related seizure.
The next day, I am loaded back in the ambulance for a trip to a bigger hospital in San Antonio, where the testing starts all over again. After two more days of testing , the doctor comes in as says ” Congratulations , you are apparently the healthiest person to ever be in this hospital. We have run every kind of test we can run on you and can’t find anything wrong with you except a broken neck.” I said,” Okay, what happens now, you shoot me.” He laughed and told me,” No, we don’t have to do that anymore.” Apparently, I had got up in the middle of the night and missed one of the steps coming out of went and talked to someone my bedroom and landed face first in the floor, snapping my neck on impact.
Now I’m just an old country boy. I have been bucked off horses and bulls, fell out of trees and barns and totaled a coupe motorcycles and a car. I should have broke my neck several times and I do it getting out bed to go to the restroom . Momma always said to not run with scissors and always wear clean underwear, but never said anything about getting out of bed to go pee.
About my 3rd day in the San Antonio hospital the neurosurgeon came in and told he was going to surgery after they got the swelling down in my brain and spine. The prognosis was I would probably be a paraplegic and be in a wheelchair the rest of my life. I had separated vertebra c3 thru c7, destroying the disc in between. I had severely bruised the spinal  cord at c3 and completely collapsed it at c7. The collapse had stopped circulation of spinal fluid, resulting in swelling of my brain. When the swelling  got so bad, it had caused the seizure, which was probably what revived me and kept from dying right there in the floor.

This was when I made up my mind that I wasn’t going down without a fight. My left hand was in a fist and my arm was drawn up to my chest with no felling. My left leg would not respond either, but I seemed have pretty good control of my right side. I taped a therapy ball in my left hand and tied my arm down to the bed rail with a pillow case. I would use my right hand to work that therapy ball and work my left arm. I used my right foot to move my left foot and toes. If I was awake, I was working. After a day or two, I got to where I could swing my legs around and sit on the side of the bed and work on moving my left side. Two nights later the nurse caught me walking around my bed as far as my hoses would reach anyway. They scheduled  me for surgery the next day. Two days later, I went into surgery at 4 pm. They wet through the front of my neck, took out bone spurs, replaced the damaged disc with artificial ones and put in a plate and eight screws to hold it all together. They got me back in my room at 9 pm. A nurse come in to check on at midnight. When she ask me if I needed anything, I ask for something to eat and a cup of coffee. She laughed and told me all I could have was ice.
When I asked her for more ice, she was surprised  to find that I had eat all my ice and drank all the water. She ask if it had made me sick and I told her no. She left to get more ice and came back and told me I could have a coffee. When she said she had to the next wing to get the coffee, I told her I would like to go too.  When she realized I was serious , she went to ask someone and returned with my walker and another nurse. We walked, slowly, to the next wing and all sat and had a cup of coffee. I would love to had a picture of the surprise on their  faces. After we returned to my room, she brought me two ice creams, a jello and another cup of coffee.
About 6 she came in with the day nurse and took my breakfast order. Now I’ve been here for about ten days so they know me well. The day nurse was so happy that I was doing so well and I kept telling her I was going home today. She kept laughing and saying ,”yea, right.” When she brought me my breakfast, I ask what time doc would be around and she kept laughing and telling me later. Just after I finished my breakfast, I looked up and my doctor was peeking at me from behind the curtain, smiling from ear to ear. He stepped  from behind the curtain and ask how I was feeling and I told him I felt like going home. He said,” I heard you’ve been up running the halls.” I said, “I told you I didn’t have time to lay around here.” He ask if I had eat all my breakfast and I told yes and I had a breakfast sandwich coming from Sonic. When he ask if I could walk to the door, I got up, hobbled to my walker, and made it to the door. I turned around to see him sitting on the foot of my bed and I said, ” how about it doc, can I go home?” He grinned, got up and told me to come sit down. I made to the bed and sat down on the foot where he had been sitting. He pulled one of those rolling stools over, sat down and rolled over right in front of me. He reached over and tightens the velco straps on my neck brace and said,” Keep these straps tight and you can do anything you feel like. I thought you would never get out of that bed.”
A few minutes after he left, my day nurse came back in and I ask how long before she got my papers ready to go home. She laughed and told me to just relax, the doctor would be around in a little while. I told the doctor had just left and had said I could go home. Again she left the room laughing only to return with total surprise on her face. About an hour later she brought in a wheelchair and took me down to the first floor, About 20 ft. from the front door , I ask her to stop. My daughter had already pulled her car to the front by the door. My nurse said she would take me to the car. I said no, I had promised myself that I was going to walk out on my own. She stopped and handed me my walker and we walked to the car together.
My last doctor said I had lost 90 % of my sensory nerves and 60% of my motor nerves. the only explanation he had for my walking was stubbornness and body strength.
Vertebras 3,4,5 and 6 all screwed together, artificial disc in between each. I severely bruised my spinal cord at 3 and completely collapsed it at 7 which caused severe nerve  damage. I am still partly paralyzed on left side and is tingly numb and aches all the time . My right feels like a severe sunburn constantly .  It’s hard stand my clothes, hair or anything touching my skin on my right side.  I currently do not take any meds, as I have tried more pills than I care to remember. I have tried 3 different kinds of spinal injections with no results. After about a year of determination and hard work I finally regained about 40% use of my left leg and foot, and 60% use of my left arm and hand. They work okay as long as I mentally tell them what to do, but I have to keep an eye on that left hand, I could put an eye out with that thing.
The right side of my body (of which I still have full use)  above my waist, from backbone to bellybutton, feels painfully tingly and numb, like bugs crawling on me 24/7.  At the waist it turns more into a burning sensation,  and the closer it gets to my foot, the worse the burning gets. Best case is a severe sunburn, worse case is you pour gas on it and struck a match to it. My right is very sensitive to touch, and the lighter the touch the worse the pain. The left side, which was completely paralyzed in the fall , feels tingly and numb except below the knee where the burning starts, which is minor compared to right side. Then there are what I call ghost pains, from out of nowhere I will have a broken rib, left arm above the elbow, left knee or right thumb, but it may ‘heal up’ in 5 minutes, or it may last 5 hours. Then there are the little, invisible gremlins that hang around and stick lit cigarettes to me and poke me with needles, which is strange because when you actually  stick me with a needle, or stick a cigarette to me, I can’t feel it. After about a year of determination and hard work I finally regained about 40% use of my left leg and foot, and 60% use of my left arm and hand. They work okay as long as I mentally tell them what to do, but I have to keep an eye on that left hand, I could put an eye out with that thing.  You are probably grinning by now, but regaining control of my left arm cost me several black eyes and bloody noses. I had no choice, I needed my left hand to operate the  clutch on my Harley,
I have been to so many neurologist and pain specialist that I don’t even try to remember . most think I’m faking. that’s what hurts the most. if they don’t understand, who will.
I’m up about every three hours with my internal fireworks show. its like fireworks shooting through my arms and legs. it will usually calm down in an hour or so, enough that I can get another nap. I collapse about once or twice a month and sleep 6-8 hrs straight, but then it takes a couple days to get moving again. I also have sudden migraine headaches that can last 5 min, 5 hrs or 5 days.
I enrolled in a pain mgmt. study in san Antonio a couple of years ago, the doctors examined me and saw my records, then laughed and said they would not touch me with a ten ft pole. I cant keep a regular doctor.
its a good news bad news deal.. god news is I’ll be screwed up the rest of my life,,, bad news , I’m healthy as a horse and will live a long time.
I got to laugh about it, the alternative sucks.