6-years of pain, not sure what to do next

Hi everyone,

I've thought for a long time about making a post like this somewhere but have put it off for this reason or that, but lately things have gotten so bad that seeking help from others who have had similar experiences seems like a last desperate attempt at relief. It feels like a shot in the dark, but I really feel out of options at this point.

I have a 6 year history of pain which I can only call life dibilitatingly chronic for the past 18 months or so. I quit my job in June because simply going to the office and sitting at a desk became too extruciating to continue. Thinking some time off might help, I spent the last two months mostly in bed. I did not get better, only weaker and more inactive. I've recently started working again (I'm on my second week) and everyday is indescribly difficult.

I've been receiving treatment for my conditions from doctors that can't seem to figure this out since 2007. I've been living in Japan all this time and while the language shouldn't be a problem, the medical system is a very different beast over here with its own extensive problems.

I know this is a long shot, and I've already written plenty, but I'm going to list out a bit of my medical history and symptoms and see if anybody has either experienced something similar or could hopefully give me some light on where I can go from here.

2006 - broke my left ankle.
2007-2008 - feet began to hurt when standing, walking, or running for long periods of time
2009-2010 - standing for more than 15 minutes became very painful. Doctors treated plantar fascitiis. Tried anti-inflammatories and some narcotic prescriptions.
2011 - another orthapedist treated me for tarsal tunnel symdrom. Did nerve release surgery on both feet, no improvement.
late 2011 - joined a company and started sitting at a desk 9 hours a day. Arms and back started hurting, after a few months, it worked up my back and into my wrists and fingers until I could barely make a fist or strike a key.
2012 - physical therapy for about 3 months. The therapist was conserned that I might have MS so I did all the tests I could, a neck ultrasound, blood tests, brain and back MRI and no irregularities pointing to pain were found. However, they did find that I have high T3 and T4 levels indicating hyperthyroidism. The doctor told me basically not to worry about it and to come in again in 3 months to make sure I wasn't getting worse. I quit my job before then and lost my insurance so I wasn't able to go.
2012 - pain clinic. I took just about every narcotic and non-narcotic based drug japanese hospitals offer for chronic pain suffers, a few took the edge off maybe 10%, but no real changes.

Phew, that's it. By the way, I'm male and 27 years old and I'm not aware of any family member who has ever had similar symptoms, though we do have a history of depression.

If anybody has any input or wants to just give me some words of encouragment, I would appreciate it. It's been years since I've been able to do the things I want to do and not I'm struggling with taking care of myself in the simplist ways. I really feel near the end of a long, lonely, painful line.

Cheers,
APL

Post Edited (APL) : 8/30/2012 1:24:00 AM (GMT-6)

Hi APL

I atop am sorry that you are in so much pain. Only we, who live with it 24/7, knows what it feels like and how difficult it isto explain to others.

I have to say that when you mentioned breaking your ankle, the first thing that came to my mind was, as Matt said, CRPS. I broke my leg in 2009 and went through similar and was queried CRPS, other symptoms apart from severe pain was, a bluish mottled tinge to the skin, burning sensations, an absolute hate of touching it. Even the slightest touch was incredibly painful. Maybe it presents itself differently in some than others, I am not sure. I was put on lyrica and prescribed lidocaine patches which have helped enormously. I never really got a firm diagnosis, just happy that I only get the very occasional flare up. One thing that I do remember was being told that further surgery would possibly make it worse. The fact that you have had surgery to your feet makes it seem possible.

However I am not sure where the rest of your symptoms would come in. I may be wrong but I am not sure CRPS would affect your whole body.

Like Matt, I am only throwing in a suggestion. I have no medical knowledge other than my own, unfortunately rather extensive, problems and symptoms. I do know there are people with the condition on here who will no doubt pop in and tell you of their experiences to maybe some who recognize your symptoms.

I do hope you can get to the root cause of your issues. It is always hard not knowing what is wrong, but knowing that something is making you feel so horrible.

Take care

Jane

Thanks for the welcome and support.

The healthcare system here in Japan is quite high in world rankings but there seems to be a serious lack of good doctors and hospitals. The experiences ones get overworked and see far too many patients and often throw a drug at you and simply tell you to come back again in 2 weeks for an update. It's especially frustrating when just going to the doctor is an indescribly painful event initself and they often end up doing more harm than help. It feels like the doctors over here are just chemisits. They test my blood, throw me into every machine and poke my body but when nothing comes up, they say there's nothing that can be done and I have no options but to give up on that doctor.

I actually haven't spent a lot of time researching my symptoms and possible sickness(es) on the internet. I have a hard time describing my pain and there's just so much information out there that I get overwhelmed and don't know where to start.

I looked up complex regional pain syndrome and I don't think that's what I'm experiencing. Touching my painful areas don't put me in more pain. Standing, sitting, walking, using a computer, basically doing anything does. I haven't experienced any changes in skin color, swelling, or any of the abnormalities in finger and toenails.

I went to a clinic today to get another full set of bloodwork done and I'll get to see an endocronologist next week. I've been doing some chiropractic stuff that puts me into huge amounts of pain when I'm doing it but gives me a little relief when I leave. I'm not sure if I'll continue that or not. Other than that, I'm currently looking for a new pain clinic that I can visit and hopefully get some real drugs, because I don't expect them to be able to do anything else for me.

I am still in Japan, living in downtown Tokyo. I'm originally from the states, very very rural Missouri. Going back would be a nightmare for a lot of reasons ... but it might be my only option soon. I've spent the past 5 years mingling with a lot of English speakers from all around the world and it's really de-americanized my English. I enjoy proper baths, rooting, and even call my friends a gobcrape if the mood strikes me.

Lately, yes, I have tried just about every drug doctors here are willing to give including Lyrica and Cymbalta. I also took some drugs that aren't available in the western world. None of them have given me any considerable help. The Lyrica was probably the best. I was 80% pain free for the first 3 days, then quickly came back to normal levels within 2 weeks.

Thanks again for the support.

APL

Hi APL

I hope what Tina has suggested might help in some way too. Although I know you are not keen to return to the US, but would it maybe be worthwhile returning for av'holiday'(yesI am British!!) just to get a good overhaul in a country where you would be totally understood.

As I have said, I am no expert, but my feeling is that it is related somehow to breaking your ankle. Again I have no experience of fibromyalgia or chronic fatigue syndrome but I know sufferers report all over, sometime very bad, pain

I guess we might be grasping at straws, but any possibility is worth looking in to. I know these conditions were once not considered real but I think there has been lots of research to prove they are very real.

Keep I touch, please know we are here for you and it would be great to know how you are doing. I hope Tina's suggestions prove beneficial, especially with the mention of thyroid issues.

Take care

Jane

Thanks for the support.

Posting on here took a lot and I'm finding that responding is taking even more. I've always had a hard time asking for help, even if it is just asking someone to listen ..

Anyway, I went to a Chiropractic place to get massages, acupuncture, electric treatment and whatnot 3 times in the past week, and although it hurts like all hell while it's happening, I feel quite loose and relatively pain free afterwards. I met a general practicioner and had blood taken last week and am finally going to see another endocrinologist tomorrow afternoon, though the reviews I've read of this hospital are quite low. I'm taking pretty high levels of anti-inflammatories right now and it's all I can do to force myself through to pain to work for 8 hours a day. I can barely type with my right hand and have to stretch inbetween sentences. By the way, I'm a translator/editor which means constant typing.

I was also told that my stomach and intestines are all flared up and that I should stop drinking chilling water and stick to lukewarm. It's awful since I'm already hot and sweating all the time thanks to my hyper thyroid gland.

Here's to hopefully figuring something out tomorrow.

APL

I wanted to welcome you to the CP forum here at Healing Well and tell you that you are not alone. It does seem that you have had every test in the book. It's a shame that Mayo or some other hospital like that can't get your records and take a look at them. I bet they will get the correct diagnosis.

Many of your symptoms sound familiar to me too, but then again I have so many diagnoses that I can't tell you which one or what is causing anything. I do know that the endo is a great help in finding the causes (at least for me). I don't produce HGH, which is a simple test and the fibromyalgia is beast too, but I also have issues with my back that they say lead to almost everything else. I understand where you are in this..except I am much older. I feel young in my mind, but my body feels like a very old woman.

It sounds like you are on the right track....seeking help in many avenues. Please don't feel stressed in asking for help. Help is here for you even if it just for the emotional part of hurting every minute of every day. I know the cultures are very different, but we come from EVERYWHERE!

I wish you luck in finding your answer. I know many Dr's may not believe in fibro, but I know it to be real and I have it. It may be a small part of what is going on with you....just a thought....I'm certainly NO doctor.

Good luck!~

Hello APL

My advice to you is to not to lose hope. There is always a chance of successful treatment to all your conditions, even if it may take a long time to come. Just carry on with your life in the hope of a new blissful chapter to emerge in your life where you are without the pain and all the misery it brings.

Try to feel better in mind, if you cannot do it in body. Remember stress, depression and similar feelings increases your perception of pain. So always find ways to avoid these negative feelings.

You may think that I am telling you all this without fully understanding your condition. You may say that it is easy to give advice but difficult to follow it. I will let you know that my chronic condition is similar to yours in some ways. I am suffering from chronic back pain for about 6 years now, starting from 2005 I think. And I think my level of pain is moderate to severe because pain medication has very little effect on the pain, just like in your case. And like you, I have not that high hopes of a release from this condition. The only comfort is that I managed to be able to live with it, just accepting how far it impacts my life.

APL

Please don't give up hope, you need that to keep you going. You have said that healthcare in Japan isn't the best. Have you seriously considered a trip back to the US.

Pain clinics are the answer for now, but at your young age I still think you should be looking for more answers than you are getting. Many of us have to fight to find a diagnosis. I wish you could find a compassionate doctor who would take a real interest in your symptoms. Have you asked around about good doctors?

I am sorry you still don't have answers but appreciate you coming back with an update. Keep in touch.

Jane

Hi APL,

Since nobody's asked, what is a godcrape, and is it something you really want to call your friends? Sorry, I had to ask! 

Seriously, welcome to the forum. I've been a member for a short while, but the support has done me a tremendous amount of good.  I know it's an effort, but if you can continue to post, I highly recommend it.

Wanted to ask you, you said you were seeing a rheumatologist. How did that go?  Did they check your sed rate?  I am in no way a doctor or medical specialist, but what you're discribing sounds really familiar to something that popped up with my mother a couple of years ago.  She woke up one morning, shortly after having knee replacement surgery. in so much pain she couldn't move. My dad had to dress her and carry her to the car to see the doctor. 

She was referred to a rheumatologist who diagnosed her with Polymyalgia Rheumatica.  Treatment has been massive doses of prednisone and a cancer drug, methotrexate.  After 2 years, she is much improved and lives a very full life. She still has regular flare-ups and is by no means cured or pain free. However, she is a pianist, and can once again use her hands to play.

As I said, I'm not a doctor, and you shouldn't take my suggestion as anything other than a suggestion. I have fibromyalgia and though some of my symptoms are similar to yours, they are not idential. If you didn't go to the rheumatologist you might want to reconsider. 

Whatever you do, don't give up.  I am almost 49 and have been dealing with back issues since I was 25. When I'm not working (because I have to eat), I'm in my recliner or in bed. Until they find a cure for what I have, that's where I have to be.  

I know you're stuggling to find the right doctor in Japan. Like the others, I really wish you'd consider a visit back to the states...maybe to a Mayo clinic? What have you got to lose?

Whatever you decide.  Good luck.