A poisoned chalice: I've come to the conclusion... - Pain Concern

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A poisoned chalice

Suzyhayes profile image
14 Replies

I've come to the conclusion that for me painkiller medication is just a poisoned chalice.   Having suffered severe neuropathic pain in my hands for four years following surgery for stenosis I have tried many  different medications and nothing has made the slightest difference.

Everything one takes has side effects that can be as bad as the pain itself and there are unseen side effects such as liver disease so I have now stopped taking all meds after a blood test revealed exceptionally high gamma levels.

I think so many in the medical profession that fob us off with drugs without a thought to the long term damage to our bodies are totally irresponsible.

There has to be another way to cope with pain than being dosed up to the eyeballs on so called pain killing drugs.

Although my pain level is still really bad I feel so much better psychologically having cleansed my body of the medication poisons.

Does anyone agree with me?

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Suzyhayes profile image
Suzyhayes
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14 Replies
coolpolitealex profile image
coolpolitealex

Yes I do agree, But', there is always a But, living with the sort of pain most of us have, can wear you down, and psychologically as well, which can make you even worse alongside the pain.  So the answer is to find a way to manage with the tools that you get, and the only tools are the pain meds, and whatever else you can use like movement,  stretching, and exercise, and we all must find what suits us best, it's a long lonely road and I do sympathise , especially when you also have to manage the input from those who do not believe you, especially neighbours, and the health professionals who don't believe in Chronic Pain, not to mention the impending bile from the community you live in, Oh and of course the Benefits People looking for easy targets to blame.

But it takes planning and using the tools you get from the NHS, which are very little, so whatever suits you go for it, all the Best Alex.  

dianadoors profile image
dianadoors

Hi Suzy,I agree completely!Being spaced out and unable to cope with life is worse sometimes than the pain.Also,I think we forget that pain is a warning and a moderator.If I use my hands too much I will get severe pain,I know not to do it next time!

Suzyhayes profile image
Suzyhayes in reply todianadoors

Hi Diana,  I'm old enough to remember the othe Diana Dors.

It worries me that so many people are totally dependent on all these drugs which at the best may mask the pain but are doing untold damage to our vital organs.  I know how hard it is to live with chronic pain but I would rather 'live' than become a zombie so I am really trying to accept the pain and carry the on as best I can.  Do you also have neuropathy in your hands?

dianadoors profile image
dianadoors

Thank you for your reply Suzy.I agree with you about the consumption of painkilling drugs.I have been diagnosed with CRPS following an accident,I also have unbelievable head pains too.I find that off the drugs I am in control,I try to outsmart the pain by keeping busy which keeps my mind working.I had an appointment with a nerve specialist just over a week ago and really wasn't prepared for how raw my emotions are.I have been taking CBD oil which I also find helps.I am getting better sleep now although I forgot to take my oil yesterday and couldn't get to sleep at all.Sleep deprivation is also a problem for me.

Suzyhayes profile image
Suzyhayes

What is CBD oil.   Have you tried valerian a natural herbal product for sleeping.

dianadoors profile image
dianadoors in reply toSuzyhayes

CBD oil is derived form the hemp plant.It has canabinoid  components.You get the benefits without the highs.I find it helps me greatly although expensive.I tried a weaker solution too which I didn't derive the same feeling from but thought I would try to see what suits me.

Suzyhayes profile image
Suzyhayes in reply todianadoors

I'm in France so this oil is probably not available here.  Where do you get it from.  Is it available without a prescription.

dianadoors profile image
dianadoors in reply toSuzyhayes

Yes,Amazon has different types

Thus far I have found CBD brothers the best

johnsmith profile image
johnsmith

Like your question.  This is a matter each individual needs to investigate for themselves as every ones life circumstances is different.  This is where it gets difficult, because the medical profession in many instances has no interest in helping patients investigate.

There is a new buzz word on the horizon in the Universities.  It is called public engagement.  There is also citizen science which is another phrase beginning to gain ground.

Hopefully, this may move things along and forward. 

CarolineC57 profile image
CarolineC57

I'm with you on this Suzy! I was put off pain drugs long before I had any pain problems. My mum had chronic pain - initially put down to stress, depression and anxiety by the doctors. She later got a diagnosis of fibrositis (which was the old name for fibromyalgia), and eventually ended up with rheumatoid arthritis but it was too late for them to do anything about it by then. Anyway, she was put on a cocktail of sleeping tablets, anti-depressants and tranquilisers - and also took over-the-counter painkillers. This was back when no-one bothered to check on repeat prescriptions - so she ended up hooked on a nasty cocktail of strong medications, with worse symptoms that the initial problem they were supposed to help.

I always said I'd never want to end up the same way so I tend to avoid drugs if I can. I did relent and try pregabalin when I was first diagnosed with fibro, but I've only ever taken a very small dose - just enough to help me sleep really, but still be able to function. Now I've got other diagnoses - osteoarthritis, cervical spondylosis and now calcific tendonitis - I just take naproxen once in a while when I'm absolutely desperate. I'm now trying to come off the pregabalin so I'll just be left with occasional naproxen.

Apart from that, I just use distraction techniques (part-time work, hobbies), relaxation and gentle exercise such as pilates and a bit of walking when I can. Also there's a brilliant physio in our village who is great at trigger point massage. I can't afford it regularly but treat myself every now and again!

It does worry me when I see how much strong pain meds some people take. I think the problem is many people are looking for complete relief from pain. Sadly, I don't think there is such a thing with a chronic pain condition. My belief is it's a trade-off - you can get *a little* relief but otherwise you just have to learn to cope with it. I'd much rather cope with the pain than have all the horrible side effects I've seen first-hand with my mum.

Suzyhayes profile image
Suzyhayes

You are right.  Complete relief from pain with our medical conditions is just not attainable and one must come to terms with this unfortunate fact.  Distraction techniques is our best option to keep our bodies free of poison.   Doctors don't care about the side effects. They just want to get rid of us as quickly as possible.

Suzyhayes profile image
Suzyhayes

What is LDN?

CarolineC57 profile image
CarolineC57 in reply toSuzyhayes

Here's some info, Suzy:

ldnresearchtrust.org/

I know several people with fibro who have had great success with it. I don't know what your pain condition is - I guess it depends on what it is as to whether it would help you. In the UK I believe some people have got it when they have sympathetic GPs who are happy to prescribe (it might be one of those things you can get on a "named patient" basis).

disenchanted profile image
disenchanted

I am hoping that all of you with chronic nerve pain or joint pain are finding a Lyme Literate Doctor (LLMD) on the ILIADS website.  These are typically integrative medicine MDs that will take time to understand your genetics, environment and history.  You cannot trust the ELISA and Western Blot Lyme tests ordered from your primary care doctor.  70% of people are sent home with a false negative and are left to fester with Lyme resulting in nerve pain, joint pain, tingles, severe anxiety, memory loss and heart problems.  PLEASE--if you are still not feeling well and get diagnosed with an auto-immune, mental health, chronic pain or central nervous system disease--find a Lyme Literate Doctor or at least an Integrative MD.  MS, Alzheimer's, Parkinson's, ALS, Arthritis, Lupus can all be caused by Lyme disease.  I was negative on the Lyme test for many years and and found an integrative med Dr. who is well versed in different Lyme and co infection treatments.    I had fibromyalgia, arthritis, memory loss, chest pain, debilitating anxiety, Psoriasis, depression, low Thyroid to name a few conditions.  After pulsing long term antibiotic treatment and neurontin for severe leg pain, I have my life back and I can sleep.  All symptoms except memory loss are gone. Still weaning off of the small amount of neurontin and have to take an alzheimer drug at 52 because my immune system destroyed my brain looking for Lyme, but I am healthy and lost 30 lbs.  Don't give up and don't give in to doctors who pick a symptom and treat it and don't find out what is causing it.  Lyme can cause all of those symptoms.  My daughter also has Lyme and suddenly got epilepsy.  Her epileptologist continued to increase her dose of Oxcarbazepine to prevent the seizures and never could tell us what caused her to get them at age 12.  My LLMD suggested that we test her for Lyme and she was positive.  Primary care doc said that she was negative. She is 6 months into Cowden protocol, which is homeopathic, and she can now wean off of her seizure meds.  Epileptologist is in shock.  Go figure.  That is why I am disenchanted.  Please also look into whether you have the MTHFR gene.  MTHFR.net.  Two common mutations can cause severe pain, stroke, fatigue, etc.  Get on methylcobalomin B-12 and methylated folate.  Not folic acid and cyanocobalomin B-12, which are in most vitamins.  My brain fog and a lot of pain went away once I could absorb the correct forms of these vitamins.  Great product called Methyl-protect.  Good luck everyone!  It is not the drugs causing the problems, it is the fact that you are not figuring out why you have the symptoms that you do, your doc is just trying to treat them.  MS used to be considered an infectious disease because docs could see spirochetes (Lyme?) in the brain.  As soon as immune suppressants came out onto the market, docs began just treating the symptoms instead of caring about why the immune system was attacking the brain.  Lyme hides in our own DNA so our immune system tears apart joints, heart and brain looking for it.  Now MS is labeled an auto-immune disease and the spirochetes are ignored.  SO SAD.  

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