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Re: Explaining my pain is so difficult.

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6 years 8 months ago #358 by sunshine
sunshine created the topic: Explaining my pain is so difficult.
:unsure: Well not really sure if I can get this right.I find it amazing that when I try describe my pain and recently I prepared a written prompt with the team I am involved in.It is dismissed ,blank expressions come to mind.My pain is chronic and varies.I have lived with chronic pain so long I have to really think about it ,as some things I just leave out because its like its part of me even though it disrupts my sleep and wellbeing in general.Also working with physio I have had to focus on my body which has raised awareness how much I have learned to compensate over all these areas physically and cognitively.Our bodies are amazing really but some of these compensations are actually not helpful in the long term. My awareness is been raised which I hope will help me be more aware of the way I move.Despite physical disabilities perhaps ,I can at least change some patterns I have compensated for which may help reduce some areas of pain.
So far doctors I have seen actually make no suggestion or comment to assist pain wise.Education I guess needs to be pretty wide spread.

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6 years 8 months ago #363 by titan55
titan55 replied the topic: Re: Explaining my pain is so difficult.
you would not think there would be so many different types of pain.now you have made me think do we just adjust living with chronic pain?human bodies are so frail.i think everbody wish our bodies were more stronger and not prone to illness and pain as much.at least you are trying physio therepy.when people are in chronic pain they basically try everything possiable in the hope that the pain will stop.it's a scary thought not remembering the last time you had no pain in your body.i feel like you about doctors and specialist.they don't always know how to stop chronic pain.maybe in some people they can work on it but there is a lot of us out there that the doctors can't help.do you take pain killers?it may help you depending which ones you try.with a lot of us it just makes the problem worse but there are people out there that it can help.hang in there sunshine.you are not alone:)

chronic migraines and headaches for over 25 years.
intercystitial cystitis.
chronic facial pain due to allergies
irratable bowel syndrome
chronic upper tummy pain
fibromyalgia
depression
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6 years 4 months ago #4385 by sunshine
sunshine replied the topic: Re: Explaining my pain is so difficult.
Sorry have not been on in a while.I have some news ,the last neurologist I saw did not ignore my pain issues.I have been prescribed Amitriptiline,starting dose 0.5mg.Although I have been on that since november ,I have noticed an edge off at times and others feel it is not doing much.However I am going to perservere with the physio and programme.I will see how it goes.I am now heading towards 9 years.I take paracetamol and brufen but that does not help with all pain,sooooo watch this space.I am on rivitrol for seizures too I might add,which I believe they also give for neuropathic pain at times.I just want to make sure ,I have a decent portion of my day awake.I suffer from fatigue as is .I would not be unlikely to say äs long as you dont knock me out!I have a children that I enjoy spending time with!!!!I have maintained graded activity and rest through my day,it works if I dont push to hard most of the time ,That is with fatigue. :whistle: sorry I am going on a bit.
Thanks for your response.If anyone can give any further information about their experience with Amitriptiline,let me know.Take care
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6 years 4 months ago #4387 by Gina
Gina replied the topic: Re: Explaining my pain is so difficult.
Has your doctor told you what is wrong with you yet ? if you suffer with fatigue quite a lot then maybe its Chronic Fatigue or Fibromyalgia. Where do you get your pain and what does it feel like ? Gina.
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6 years 4 months ago #4393 by titan55
titan55 replied the topic: Re: Explaining my pain is so difficult.
yes i tried those amitriptilines sunshine for my chronic headaches and migraines and every other drug on the market and none of it worked for me.i saw 4 neurologists and none could help with my chronic pain but there is nothing wrong with my brain.i hope you have better luck with your specialist and the drugs he puts you on.you sound like a great mum and that is a good thing.take care.

chronic migraines and headaches for over 25 years.
intercystitial cystitis.
chronic facial pain due to allergies
irratable bowel syndrome
chronic upper tummy pain
fibromyalgia
depression
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6 years 4 months ago #4399 by sunshine
sunshine replied the topic: Re: Explaining my pain is so difficult.
Well it is complicated as I see by their faces!!! But basically I have an acquired brain injury ,clinical diagnoses being encephalitis myalitis which has left me with permanent disability.Fluctuating cognitive and physical ability.I use a chair which i cant self propel and a stick at home.My executive functioning skills have had a blow soooooo.I have wonderful ideas of how i am going to do things and fail.With some help i am working on that too,as try to function like i used to.The fatigue is apparrently part of all this.chronic fatigue.Fatigue soo doesnt explain.My condition happened literally overnight.
Anyway chronic pain being one of the added things to manage.so to answer you question,diagnosis yes and no.I say this as doctors i see now 9 years later dont think thats the cause,I however was very typical of an encephalitis.But who knows hey!!
I have come to the conclusion as have been undergoing testing scans etc.That regardless of diagnosis X,Y or Z.With some help i can move forward on the aspects affecting my life as much as possible,so that what I do,just my best.I dont expect any magic bullet,anything that helps me be part of this world,society and free of isolation,frustration.I hope will help me and my family.I used to be very independent,could drive ,work always there for others.NOW i am fighting for my independence as in not allowing my dignity to be stripped,to be heard,be seen as a person despite the chair or stick,to be seen for ME!I have with a bit of help learnt how to internet shop which i thought was so cool.this to help my husband and contribute.
:whistle: there I go again did I answer your question.oh boy.take care.2 steps forward and one back.Wether I get there in the end who knows but I feel better as I am doing something that now feels more realistic ,yes and it took a bit of convincing me to accept help.surprised.!! i am grateful.
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