My pain exhausts me

I have idiopathic peripheral neuropathy in my feet. I hate that word - idiopathic. I feel like doctors are saying I'm an idiot because I have pain even though I know it just means they don't know what caused it. But the pain is real. Some mornings I wake up and just cry because it's the first thing I feel. The pain started 6 or 7 years ago and kept getting worse and worse. But this last year, the pain went off the charts for me. I've had so many tests, seen so many specialists, and taken so many medications. The constant pain is causing so much depression and anxiety. I've been seeing a therapist weekly to work on cognitive behavioral therapy to sort through all of that. The medications make me foggy and I get frustrated at work because I can't think clearly which leads me to feel stupid. I'm a 44 year old single mom. And sometimes I think I won't be able to continue living a life where this is my normal. I have all the standard symptoms of PN, but something I experience regularly but I haven't seen as a usual symptom is this feeling that the muscle from my heal up to my toes is contracting and pulling my toes down. Maybe I'm not describing it correctly? Does anyone else experience this? Then when I force my toes to fan out, there's popping and cracking in the joints of my foot. I'm so confused and disheartened by all of this and I feel hopeless. Any thoughts?

[Kingsley09]

The Drs say idiopathic because they don’t admit to not knowing or my son thinks they know mine was caused by taking statins and if they admit that is a cause it would open the door to a lot of them being sued as I have known of quite a lot of people taking statins that have developed neuropathy

[Hidden in reply to Kingsley09]

I did take statins for 3 or 4 years. I stopped about 5 months ago and am working with my primary care physician on managing my cholesterol levels in other ways. I had thought the statins were causing joint pain. However, my neuropathy symptoms had started a couple of years before I started on statins.

[johnsmith]

you say: " I've been seeing a therapist weekly to work on cognitive behavioral therapy to sort through all of that."

Cognitive behavioral therapy is not going to work. You are trying to control something by mental means that is a physical problem. There has been new scientific knowledge on the Fascia since 2007. Fascia is something that carries a high degree of importance. Unfortunately, it is the bit that many medical students threw away as something of no interest when they did their dissections.

There are books on the subject and interesting videos on youtube. Google "Anatomy Trains" Google "Thomas Myers". Google "Robert Schleip".

The body posture and movement influences the mind. Google "Antonio Damasio".

There are physiotherapists who work privately in the UK who have abandoned University trained physiotherapy and replaced it fascia work because they got better results from fascia work.

I wish I could say more. It is unfortunate that I knew nothing about fascia two years ago. I am still in the slow process of modifying old knowledge (not quite correct) with new knowledge which explains things better.

One interesting bit of research that is being developed albeit slowly is that the model of nerves that neurologists work with is wrong. There is a new model which explains how nerves work both as a piezoelectric crystal and as a liquid crystal. There was an article in an Scientific American magazine which explained it in detail. Still trying to assimilate it.

en.wikipedia.org/wiki/Solit...

theguardian.com/science/neu...

nature.com/articles/ncomms7697

If there is truth to the above then a lot of treatment that is being given for various conditions by medical profession is based on wrong assumptions.

Stop there. Still early days in my thinking on this vast subject.

[Hidden in reply to johnsmith]

Thank you for all the information on fascia work. I will definitely check out some of the videos you mentioned. My massage therapist is trained in fascia release and when she works my feet, I fall asleep. I'm using CBT to help train my mind to calm down when I start getting anxious about the pain and my thoughts fixate on the idea of enduring a lifetime of suffering. I wouldn't necessarily say I use it as a means to remove the pain.

[sianr]

Hi Jenny, the physical and emotional are one, when we feel pain it affects emotion, when we have an injury it affects how we emotionally deal with it, it affects life and all those in it,

worsening emotion increases pain - increases stress - - increases pain - reduced ability to focus - increases stress - increases pain. It’s a cycle a roundabout you feel you can never get off. Help is needed.

Dealing with any type of pain, trauma or injury can be helped by using other methods, CBT can help in various aspects of ones life which subsequently helps with other areas, however I do feel you need further investigation in to what you are describing as this sounds like a mechanical issue.

Return to your GP refer yourself to physio ask for further investigations from the GP & physio, speak to them about options where you go from here, they have a responsibility a duty of care to not dismiss you and accept what has been said to you.

I don’t agree trying other options won’t work at all, we need help to manage our self and our emotions when something is affecting our life day by day threatening our future where we feel things are bleak and we have no future.

CBT helps with the emotional side of management of what is happening to you but it doesn’t solve the ongoing problem, take control and that is where CBT can help, when we as a nation decide actually I don’t have to accept everything said I can and will look at other options to better your life because it’s you that’s living it.

Finding a solution is where we want to be however the reality is far from ideal. We have expectations of the medical community and this is just unrealistic, we expect more from them, we expect help where it is needed, solutions and planning on where to go next, a huge emphasis is placed on the medical profession and this is where it fails. They don’t have all the answers but won’t admit it, they don’t have resolutions on where to go next because some of them don’t know (ok most don’t know). The medical profession is only now starting to change how they look after the nation, however that doesn’t help you right now.

Doctors dismiss anything they can’t explain as something which doesn’t exist. Must be the patient’s problem it’s all in their head. The medical model has a great way of making people feel they dont fit a medical criteria which is where names are placed on certain conditions as it’s something they can’t explain, it doesn’t mean it’s not real.

Many new concepts and treatments have evolved from people not fitting in to a medical book, the new doctors are being taut that everything isn’t all about the medical book which is been their bible for many decades.

Please don’t give up your not mad your not making it up, it’s real it’s happening to you, try and keep your mind open to many possibilities, being in charge of your own life is autonomic, being in charge of your own health is exhausting because the expectation of help is not and should not be unrealistic, but when the body and mind don’t function in a way we have all been taught it should, help is needed t allow you to deal with it both physically and emotionally because if you are not in a safe solid emotional state you won’t make the right decisions.

Finding out the help received is limited to the practitioner you see and if they believe in you is a hit or a miss, we are in charge of our own health and where that path leads, good luck and remember this site is great for help and support but each and everyone has their own experience which you can let it direct you in a path only if that one is right for you, please leave your mind open to all possibilities whether others experiences are positive or negative one size doesn’t fit all. Good luck

[johnsmith in reply to sianr]

Like the explanation. Will be very interested in what you think about the Fascia concepts.

Fascia is where the emotion is. The Brain sends a signal to the fascia which then modifies itself and sends continuous signals back to the brain. The brain then makes decisions on memory and social processes it accesses based on the signals it receives from the fascia.

So change fascia tensions through appropriate movement and different emotions manifest itself.

[Hidden in reply to johnsmith]

The plantar fascia is connective tissue between the heal and toes. As far as I am aware, it is not a emotional centre. See the att’d: mayoclinic.org/diseases-con...

[johnsmith in reply to Hidden]

Thanks for the reply. Have a look at this.

anatomytrains.com/blog/2015...

youtube.com/watch?v=oSa6Kbo...(Not working as expected?)

youtube.com/watch?v=LGGgEFQ...(Not working as expected?)

lots of videos with interesting ideas.

The first international conference on fascia was at Harvard medical school in 2007.

Fascia has thousands of nerve endings which feed into the spine. This is very different than the old medical model of fascia.

[Nanajudy in reply to sianr]

I have found my osteopath has helped more than a physio!! And how some meds may worsen pain!!! I was thinking of going on statins for my legs...calf pain on walking...but I think that will be a no-no!! Maybe more chilli for me... Good luck...and keep talking/ asking until you get help!!

[katieoxo60]

Understand your frustration, this discription sounds like some kind of muscle type cramp. Cramp can be highly painful. You often need to find a cause rather than a diagnosis at first. The usual answer to pain these days is take a pill then they cause side effects and create a vicious circle. Understand your foggy feeling from pills , not easy when working , in pain and on pills

[Lolarufus123]

Hi sorry to hear you are in so much pain. You say you have all the symptoms of pudental neuralgia. My sister and I both have PN and we both experience some unusual symptoms. My sister says she has Linda Blair feet. She's talking about Linda Blair in the movie The Exersist where her head spins around. My sister says her feet just spin around quick ly and are almost facing backwards and she can't move them or walk. Since I have had PN, 11 months now I get a really itchy hip. It's all red and covered in sores and scratch marks. By the way what meds are you on? And are you having any treatment for you're PN.

[Cb1963]

Hi there, I'm a sufferer with pn, and have had the symptoms for roughly the same period of time, now I found that the symptoms can come in different sorts of guises and cause pain in different ways if that makes any sense at all mainly in my legs and feet, burning, pins and needles, shooting pains, swollen, muscles twitching, and cramps, I've not had the popping in my feet, but I do get cramp in my toes and cramp is a painful condition, but with pn the list for symptoms is as long as a weekly shop, and how one person describes one thing, someone else can describe it totally different, yep its a horrible condition to suffer with, so do not let folk stress you out, as I find this increases the pain, even your loved ones will struggle to understand your condition as there's no visible signs, have you been to get your blood checked for vitamin B12 issues, it's a nightmare trying to get your head around the condition, and it's constant 24/7 the pain, so my sympathy is with you, try drinking tonic water if it's cramps as quinine is in the drink, but you know yourself trying to find answers is like the preverbial needle in a haystack, sorry its not the best of information, but theirs lots of folk on here will try there best for you, good luck

[baldric]

I have had PN in my feet for quite a few years now. I've tried everything. I get foot cramps that wake me up in the middle of the night and those first steps when I get up are the worst! It's like walking on gravel all day long. It's not a cure, but I find that my life savers are a pair of rather expensive flip-flops called Spenco Yumi which I found on Amazon

[Scott-B]

Neat feet make a cream for foot pain try it I’m almost sure it is for your exact pain

[ssdw1958]

i want you to know I have similar pains and i have had them for very long time. I feel if i didn't have this maybe my walking would be better. maybe,

my heals hurt to the last week i also have woke up with such pain i also was crying. i mean it some times it feels like i have boots on my feet that's how heavy it feels. I know i say this a lot but the humidity has been ridiculous lately. I know this sounds like it can't happen but this is one small piece of the puzzle, Now if only I can find out what else is going on..

If any one could find out what is going on I know a lot of us would appreciate it.

Have a good weekend

Sandra