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”
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.
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.
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.
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.”
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.