Chronic pain for 9 years.. willing to give away my life savings for help

TL DR version: any pressure or movement on my groin area shoots pain down into my feet and outer thighs. An erection causes extreme pain. The only position where there the pain is bearable is when I lie flat on my back on a very soft bed with my feet stretched out in front of me. Any other position ie standing, sitting, lying on my side is not possible for longer periods of time. As a result of all this, I have to lie in bed for most of the day, for about 20 to 22 hours.



- Standing or walking hurts a lot.



- Sitting hurts less, but depends entirely on the chair. If it’s a soft ergonomic chair I can sit for hours sometimes without too much pain. A hard chair is sometimes unbearable, as is a low chair or a stool.



- When I have an erection my feet hurt a lot. This along with squatting is the worst trauma to my feet . I usually wake up during sleep, even if I only have a semi erection during the night. This can be up to 3 to 4 times a night and at worst sometimes even 6 or more.



- Having sex is the most painful of all four of these things, so I keep it to an absolute minimum, about once a week . If I don't have sex I usually have erections during the night anyway, and sometimes that can be worse, ie if I wake up to 4-7 times a night.



- Squatting or bending over is something I have rarely done for 8 or 9 years now. As soon as I squat or stand and reach down (ie to touch my toes) the pain shooting into my feet and legs is absolutely unbearable.



-Going to the toilet and straining to defecate. Urinating is not a problem at all, but if I have to strain, for example when I'm constipated (even mildly) this can also change my the pain in my feet from being bearable to being absolutely painful in less than a minute.



-Lying on a hard surface. I can only lie in the softest mattress where my whole groin area sinks into the bed and has little or no resistance. Lying on a hard surface (like my wifes mattress) is usually unbearable for anything more than 5 or 10 minutes. The pain in my feet and legs just gets too intense.









HOW IT HAPPENED



One afternoon in August 2010 I had come home from a run and called my wife. We had phone sex but I was lying on a very hard surface, slightly softer than linoleum, and was quite uncomfortable. I had a lot of work to do that night and was in a bit of a hurry, otherwise I would have gotten comfortable. Because the surface was so hard. I put a pillow under my bottom, so my whole body was arched. During masturbation (on a downstroke, I must have pushed my penis down too hard) the pain just erupted, and shot down into my legs and feet.



When I stood up my thigh and foot hurt. It was like a buzzing sensation, like pins and needles but with no numbness. I didn't think too much of it at the time. I thought I had pulled a muscle or cut off the blood supply temporarily, like when you cross your legs. I’d been injured a few times while doing MMA a few years before that so I was used to strained muscles, pulled ligaments and sprained ankles and assumed that the pain would subside within a week or two.



The next day I couldn’t go for a jog because every time my foot hit the ground it hurt too much to keep going. At that time I thought there was just something wrong with my foot. Over the next few weeks the pain got worse and worse. I went from going for a jog everyday, to not going for a jog at all and eventually not even a walk anymore. Within three or four months, I cut back my working hours because my feet just couldn't take it anymore. Within half a year of the incident, by the end of 2010, I'd stopped working all together. In February of 2011, I was lying in bed all day long apart from going to the toilet, shower and getting something to eat. Since then it has only gotten worse. It has now gotten to the point where the pain is constant.



When the pain is bad. I cant lie on my side at all. And I have not slept on my stomach now for 8 years or 9 years.



I have gone from a working person with reasonably good health and a

reasonably good job and a reasonably happy life to a person who’s just hit 40 and who has spent the past 10 years lying in bed flat on his back, not being able to lie on my side, not being able to lie on my stomach, not being able to curl up in a comfortable position. Let alone being able to freely work, jog, have sex whenever I want or even masturbate. I can do all these things, but they cause extreme, debilitating pain.



THE NATURE OF THE PAIN



My feet constantly feel cold. I wear socks in summer because of this. When the pain is very moderate, it's a very slight tingling sensation. When the pain is worse, this becomes a buzzing sensation which also feels like burning. When severe, this also becomes a stabbing sensation and at the absolute worst, it's like my whole foot is being crushed. There is only pain, I do not have any numbness in my feet or loss of feeling or strength (apart from the lack of strength resulting from lack of exercise). However, the only thing that neurologist seem to test for is numbness.



Both of my feet and the front of my thighs (esp the outer side) hurt. There are two areas which are painful: the sides of my foot (ie the outer blade) hurt the most, and so do the top of my feet. There is little to no pain on the soles of my feet, nor is there any pain above my ankles in my calves. The other place is the outer part of my thighs. There's no pain on the back of my legs, on my inner thighs or on my calves.



Both feet hurt, but the left one the left foot is significantly more sensitive than the right one. If I can lie on my side, it is usually on my right side.



The best comparison to describe the recovery from the pain would be a sprained ankle. The actual spraining is painful. But walking afterwards is painful with every step and requires recuperation without further trauma. For me, during the trauma itself the pain is just as bad as the recovery. It usually takes about 3 to 4 days to recover from such trauma, ie sex or going for a very short walk. This is why I lie in bed most of the time. If the pain was only present during the trauma, I could deal with the short term pain. The recovery period which usually takes 3-4 days in bed virtually all the time save for going to the toilet, showering and eating. But if I have an erection or multiple erections during the night this can take even longer, up to a week or longer if I am unlucky.



The pain has gotten so much worse since it started. I used to go on short walks with 1-2 day recovery periods in bed. Now just walking around the house (to eat, shower etc) hurts too much.









ABOUT ME AND PREVIOUS MEDICAL TREATMENT





I have always been reasonably healthy during my life. Even though I've now spent 9 years in bed. I'm still not overweight. I look pretty pale/out of shape, but most people would after being mainly indoors for almost a decade. But on the whole I am still healthy. I have never had mental problems and love(d) going on a nice walk or jog once a day.



I am motivated. I constantly occupy my time doing useful things or what I can consider to be useful things. But I am completely wasting my life, and I'm in pain constantly and it’s getting worse.



I need help desperately. I am willing to give or pay. All of my money, which is about 20K to anyone that can help me or put me on the right path.



I have seen doctors and specialists, but I have got nowhere because they do the same two or three tests as the previous specialist and then send me home. They see me walking. They see me sitting. They see

me talking quite normally, and they think or insinuate “well it cant be all that bad, some of my other patients have it really bad” or something along those lines.



Before any appointment, I cause as little trauma as possible for about a week. Ie no sex, no going for a walk. That way the amount of pain is bearable for me to go and see the doctor. When my feet really hurt, ie the day after a walk, an appointment, sex I can't even imagine standing or sitting for anything longer than a few minutes at a time let alone spending hours in a car/waiting room.



And that's how it's been for 9 years. I see a specialist doctor or a neurologist. They look at my previous MRIs/X-Rays etc. Either they send me to do the same scans again or they look at the result of the scan, and they say well there's no problem here and they send me off. I live in Europe so healthcare is free, but not very good unless it is a common issue. I have tried all kinds of medication: Lyrica, Gabapentin, all kinds of SSRI’s and apart from making me feel tired have had very little to no effect.



I have come to the end of my rope. I simply don’t know what to do anymore. I have seen neurologists and as described above. They see me walking in they see me walking out. They test for “numbness” with a scrape test. There has never been any numbness whatsoever, and I always make sure to tell them there is zero loss of feeling, only pain. But they've do the numbness test, look at past MRI’s and they send me home my feet buzzing/burning in pain and having wasted yet another few hundred Euro and another few weeks of my time.



I have reached the end of my rope and simply cannot live like this anymore. My wife has stood beside me this entire time and she deserves better as well. My life is simply not worth living this way. I am not a depressed kind of person and amazingly enough through all of this I still do not have what would clinically be defined as depression. That doesn’t mean I am in a happy person, but I am more pissed off and angry then I am depressed. In fact through my whole life. I have never had been depressed.



So in short I am suicidal at this point in time. Not because I want to die but because I can’t bear the pain anymore. I simply cannot live like this anymore and nothing is being done to rectify it. The pain has gotten so much worse as well that I just can’ take anymore.



If someone could send this to someone else. They know who who might be able to help me. I would also be extremely appreciative. I still have so much to offer. I am still young (relatively!). I still have a lot of motivation. I still have a loving wife. And I really really don’t want to die, but I simply see no other way out. Lying in bed for nine years, in constant pain is something I never ever thought would happen to me in my wildest dreams / nightmares.



If anyone can help, or point me in the right direction, or share this with someone who can help, I will not only be forever grateful, I will be happy to reward that person financially. I have dealt with a lot of other people’s money in my life and have always been fully honest in my dealings.



Also if someone can tell me other appropriate boards on which I can post this I would be very appreciative. Thank you for reading.



daskato@protonmail.com

 

I’m so sorry to hear of your 9-year on-going nightmare. I too was at a point where I wanted to be dead because of my on-going pain. I no longer feel that way because of the remarkable progress I’ve made through mindbody work.

I assume that because you are on this site you know about Dr.Sarno’s books? If not I would start there. For me, his books The Mindbody Prescription and The Divided Mind, along with Scott Brady’s book Pain-Free for Life—The 6-week cure, and Steve Ozanich’s book The Great Pain Deception were all critical to my healing journey and helped me understand the mindbody connection. Schubiner’s book Unlearn Your Pain was also helpful to me.

Since trauma is often underlying chronic pain, I also really liked Waking the Tiger by Peter Levine, and books my Bessel van der Kolk and Robert Scaer.

Reading is something you can do easily while lying down and will get you started on understanding how the mind can influence your physical body. Believe me, I thought it was malarkey when I first was told it could be my mind influencing my body, but in desperation I read these books and came to understand the power of the subconscious mind. Not until I accepted that did I really start to heal.

Some people get better just from reading or implementing the mindbody approaches by Sarno (or others on this forum— other people can probably lead you there, as I’m not positive where they reside). But this alone wasn’t enough for me.

The other thing I did was get bodywork. I know Sarno says don’t focus on the physical body but I had specialized mindbody-based myofascial release therapy (JFB-MFR) and that essentially saved my life. It helped my mind and body break habitual subconscious patterns that were keeping me in terrible chronic pain.

If you want more details of my journey, you can peruse my website: https://healingfromchronicpain.com/ (Welcome to HealingFromChronicPain.com—support to myofascial pain sufferers)

I wish you the best of luck!! Don’t give up!! Healing is possible!!

 

Hi sammythecat,

Like healingfromchronicpain, I want to welcome you here, and express my empathy and support. I suffered debilitating foot pain for years, spent huge amounts of money on all kinds of treatments, and did not do the surgery that 6 or 8 physicians recommended. Instead I did the work outlined in this Forum and sister site Wiki.

First, I recommend that you do get support, therapy support for your feelings of hopelessness, if possible. While understandable -----many of us here have been in a similar place--- professional support is crucial so that you "stay in the game." You have a strong constitution, a great will inside, to arrive here still "standing." Accept support, and in the meantime engage in the kind of work we educate about here. But it may take some time to get results. In the meantime get whatever help you need to stay with the living.

What you describe has some support for being TMS: it has gotten worse over time, physicians "can't find anything wrong," it is bilateral, you come off like a very responsible person.

Doing a full assessment by a TMS trained physician would be ideal. Georgie Oldfield has a successful practice in England, but she is not a physician. It may be worth traveling for a good assessment, and there are resources listed in the Wiki.

Also at the Wiki you'll find self study programs, including the one listed above as Alan Gordon's. His is especially effective at addressing your conditioning, fear, and triggers. In my case, I realized after awhile that I was conditioned to expect pain after use, so it happened, much as you describe. Questioning this was hugely helpful for me. You can see in the Forum sections where participants respond to their learning, and get feedback.
Primarily, in whatever way you use this method, this will be your personal journey. No one can do the inner work for you. It takes bravery, persistence, strength, and a willingness to know more about yourself.

There are many specialized counselors and coaches listed in the Wiki who can work long distance with you. I am one. There are many good ones with huge experience.

Like healingfromchronic pain, I wish you the greatest success. Even without getting "checked out" by an expert, you can embark on this journey immediately through our programs.

Also, read success stories. TMS creates pain anywhere in the body, and this probably applies in your case, given the clear reports by physicians.

Andy B

 

Sammy you are in the right place brother.

Check what Andy and healing said.