New here and in huge need of advice

Hello all,
I'm here as Kahri and I'm 23 years old lady. The reason I came here in the first place is, that I'm in total corner with my illness/pain and second, there's no such forums like this in my native language (finnish that is). I really would need any kind of advice in my situation, I've thought all kind of possibilityes but might be that I'm missing something.
This is very long story so I hope someone has time to read it.

So.. All started when I was 16 my right jaw joint started to make weird clicking noise. I didn't put any attention on that untill it didn't go away in 6 months, I told about this to my dentist. While it seemed not to go away at all, I got sending to jaw specialists. Specialists said it's kinda common thing and nothing much to worry about. There I was for years, joint breaking more and more and also the left side started the same. I started to get pain also more at time, first some days were bad, then many days were very bad.
Doctor sees the damage getting bigger all the time, while I was in couple magnetic researches and many things I can't much remember. I tried out many kind of painkillers but rarely there were good help from them.
I went trough two surgeryes, where they wash off the broken materia inside of the joint. First surgery helped for a little while, but while joints kept breaking I got to the second surgery. And after getting home from that, I had totally insane pain that I couldn't bare it, even after strong painkillers. It kept for hours and I was thinking of ambulance but didn't make that call.

So breaking continues, trying more drugs, injections to joint and more filming the joint. This continues about 5 years. My doctor couldn't tell, why the jaw started to break itself without any trauma. Then happened I got study place another side of Finland and my treatement followed me with.
Pain started to be very often, making my first year of study difficult, expecially at the end. I was very much in pain, and I was eating medicine called Ardinex maximal amount every day. I went to many jaw doctors, they tried out all kind of injections and painkillers that had no help. Only Ardinex was helping, but it's making me very messy and I'm not able to think clearly on it. I hate the state it makes. Eating was very painful and only way to do that was take the max of painkillers and wait hour or hour and a half untill the help was it most and I could eat somehow without tears.

So they sent me to reumatolocist that said I have no any indication or reuma, so they can't help me out.
And jaw specialists couldn't help me out either, only what was left now was put protes (not sure how it's in english) on the joints. Artifical joint that is, but they don't want to do this, cause I'm way too young it to last whole life. And it might not help at all.
Pain was now every single day, every single moment. And not just little, so much it was disturbing all the time, making totally unable to work. I had to stop my studying cause I had no more good days, and with such pain I just simply couldn't concentrate or do anything. Only the drug Ardinex was having some effect on the pain, but since is "triangle" medication, it made me blurry and weak so I was unable to go to study.

I got sent to the Pain clinic. There they made me think where is the pain, when it is and what makes it worse etc. At this point it wasn't only joints hurtfull, also the muscles that have something to do with jaw. They were very stick and didn't release even after massasing.
So there I said my jaw joints hurt and also all over the head the muscles.
After that I was sent to pain clinics own psychiatrit and spychologist. I said there that pain was unableing me to work or live normally, but generally I was happy, not too much worrying my head with the constant pain, just trying to cope with it.
Same time I was seeing my old jaw doctor, and I came to him in very great pain. I was much worse than I last time seeing him and he kinda kicked me out fast with no help.
I kept seeing the pain clinicks doctor many many times, I got to try some drugs, that were more for some psychological illness than pain. I tried them out, I got no help from those, pain was very very awfull all the time. I kept saying I need something for the worst strikes of pain and since I was almost unable to eat I wanted to have something to help. But all response I got, was "Just keep taking the pills, it will get better".
In the meanwhile, I got so bad moments I had to call for an ambulance, but since it's already chronic pain they didn't help me out so they send me to hospital. I had very very very bad strike of pain going on, crying my eyes out and getting totally crazy from the pain. I was in this state in hospital for 6 hours before they agreed to give me something better working than aspirine..

I told about this to my doctor at painclinick, all I got was sending to my local psychologist. I went there as told, but after 2 hours interview the psychologist and psychiatrist said that there's nothing they can do to me, I'm not suffering of anything they could help with. Only the pain was the reason I was gloomy and nervous.
Well to this my painclinic doctor was totaly amazed and yet send me to another spychologist to get help for my pain.. And same thing there, they couldn't help me cause I had nothing mentally wrong.

I was trying to understand my doctor, but since my state was absolutely horrible all the time, and I had fear of getting into hospital again, I wanted some painkillers, muscle releasers or anything. Still she was sure my pain was mental, and I had to kept on drugs that don't help me at all.

Because of all this, I went to private doctor who knows something about jaw pain. I wouldn't have afforded the trip without the money I got from others. There he noticed that I had huge cramps on my head and neck muscles, and only those alone would cause much pain. Doc gave me some releasing drugs but they had no help.

After telling about this private visit to my painclinick doc, she got furious and kicked me off from the painclinick. At the time it was total shock to me, I was on the phonecall with her, asking where I could turn to help, and she kept saying that try the private. I said I can't afford it and pain klinic is the only place who could have some help with this.

Later I ordered the patient files to myself from pain clinik. There I read that they were sure of some major mentall illness and even when my joints are broken, the pain is totally mental. Even my jaw doctor said it is mental, cause "I had more pain than should". This was totally absurd, cause I went trough so many pshycologist that say I'm totally normal in that matter. And all what I had said about muscle pain, was considered as a headache. At the end, the reason for my kicking out from clinic was that I refused from help. How I could refuse help, while it was the doctors who said they can't help me and said there's nothing wrong with me mentally.

So now I was in this kind of situation:
-Painclinick, that has the most authority of all cliniks in Finland says that I have mental illness, and pain is caused by it.
Because of this, if I went to any doctor now, they see my files from the pain clinic that says this is mental.
This means, I'm unable to get any help in Finland, can't get painkillers of any sort, only mental help. "Lesser" doctors can't start go cross to what the awesome Pain clinic says.

I was now months just laying in bed, didn't want to wake up at all, cause when I'm awake, the pain comes. I had no working pain medication. I had very terrible pain strike again and as another time, in hospital I waited for hours for some help. Those experiences were totally killing me, cause it's just sick what you are going trough when pain is unbearable and you have that going on for so many hours.. And the worst thing in this was that I'm in hospital, where people are able to help me anytime they want, but still, I had to suffer badly for hours.

Now we are getting closer to the situation I'm in now.
Being so sickly without any good pain medication, no hope for further help, me and my boyfriend went to his home, Poland to search for help.
The first doctors I seen there, were trying to help me in any way they could. If they couldn't help, they were searching someone who could. And the most important thing was that they took me seriously from the moment I started telling about my pain and situation.
I saw one, jaw specialized dentist that wasn't able to help me, but she took efford to check my possibilityes in the range of whole world. There wasn't much cause my illness is very difficult to treat, there's not so many choises. She checked then the best jaw doctors she could.

From she I got two options (inside of Poland):
One doc, who's specialized on my type of pain problems, but treats them without any surgeryes.
Second place was, if the first can't help me was someone who has done many surgeryes and knows if they are at place.

I went to the first doctor and he had seen many similar cases as mine. He said it is absolutely absurd what the finnish doctors blame, that my pain would be mental. Such things that I had going on are making much pain and can't be noted just by mental matters.
He was suggesting that my pain is totally caused by the muscles, and the pain in the joint is there because it reflects there from certain muscles. He put me to do regular masages for the trouble places.

I've done that for months now, the massages help some but majority of the pain is still there. I have some pepper stickers to put on the hurtfull places to make them numb. But still, they aren't enough and I'm getting absolutely sick from the constant pain.

I've been in chronic pain over 2 years now. I'm unable to work because of the constant strong pain and I have now no idea who to turn next. Working painkillers I haven't found yet, one reason for this is also that doctors don't want to try very strong painkillers too easily. And when they can't be sure what is going on and what creates the pain, they just keep waiting and waiting.
Pain clinic, psychologist, jaw specialists, reumatologist or anyone I've met have no idea what really is the major cause of the pain. Or how to treat it.
I've already seen an army of doctors and my hopes are going down totally.
I don't know where to turn to, I don't want to take the artifical joint, cause you can't reverse it and it might even make things worse.

Is there place that I should try? I'm asking in anywhere in the world. I'm only 23 years and I'm afraid to be in such strong pain for the rest of my life. I can't continue any desent life in this state. I've already "wasted" totally two years in strong pain, lying in bed and suffering. Just getting painlevel low enough is all I ask. There can be pain all the time but not so ridiciously high as I'm having every single moment.

You poor thing. I know first-hand how awful jaw pain can be. I had both sides of my TMJ's replaced due to the bones fusing together. Essentially the jaw had become like a zipper and it was slowly opening less and less. I was also young for the replacements, but there was no other choice. Thankfully, very few people reach the point of total joint replacement, but other TMJ issues can be just a painful and just as serious. Actually, I had to see a counselor prior to the replacements to make sure I understood that the pain would most likely be greater after surgery. The surgery was purely for function. For me, that pain is most definitely greater, but I'm blessed to have a supportive drs-including a pain management dr.

You need a dr that will listen to you and find the source of your problem. Of course, you already know this. I hate that it is so difficult for you. Unfortunately, when it comes to the TMJ's, it is often hard to find a dr who understands and is knowledgeable. I was told that 80% of the general population will have TMJ issues at some point in their lives. For most of these people, it's an occasional nagging pain that goes away on its own. Kinda like a simple headache. This makes it harder for those that have more serious TMJ issues and pain. Most dentists do not have the training to treat more serious TMJ problems. I agree with Susie-it sounds like the Drs in Poland are the most helpful. Maybe stick with them to see if they can come up with a plan? If not, you need to keep looking. I know it is frustrating and overwhelming, and it's also not fair. Even with all the dentist and oral surgeons here, patients can spend years trying to find a dr who can help. It shouldn't be this hard, but it is.

I understand your fear about having the joints replaced. Some other statistics I was told-of those seeking treatment for TMJ pain, only 5% should have surgery. And of the 5%, only 1% need the joint replaced. Usually the joint is replaced in cases of trauma, cancer, or fusion. If a dr does suggest joint replacement make sure you get 2nd and 3rd opinions. It is a life altering surgery, but if necessary, it can be life changing. Most likely, your symptoms can be better managed with a combo of splints, physical therapy, and diet changes. It's a long and slow process, but for most people it's successful. But, you need to find a dr to prescribe these treatments. Pre-surgery, instead of pain meds, I found muscle relaxers the most helpful. Your jaw muscles are crazy powerful. When they spasm or lock down, it creates a HUGE amount of pain. For many people it feels like the pain is in the joint, but for many it's the muscles around the joint. Muscles or joint-it's still a lot of pain.

I know I didn't give you any real answers. I just want you to know that I understand the pain you are feeling and how overwhelming it it. When your knee hurts or your hip, drs know what to do. TMJs? Not the same. I wish I could send my dr over to you. Please don't give up. It's not just in your head. Well, it is in your head....but you know what I mean. Your pain is real and there has to be somebody who can help you. Just don't give up.

I'm sorry for all you went through. I'm not sure what kind of jaw problem you have.I know someone who has TMJ and has told me Valium helped her with the pain.GL to you.

Kahri you are so young to have to experience everything that you have, I know how frustrating it is to be labled that it is all a mental problem when it is not. It is a easy and lazy way out for some doctors to do that, the only problem with labeling a patient like that is the label usually sticks and then it is very very difficult if not impossible for the person to get the real problem diagnosed and treated!  Have you tried googling the internet for doctors and treatment in other places in the world, May I suggest that you try Googling Mayo Clinic or something like that there are many others John Hopkins,  anyway see what they offer in the way of treatments for conditions like yours, and maybe E-mail their clinic, or send them a letter explaining your problem, and asking for help and suggestions on what can be done. Tell them what you have told us, be honest, if you can't go there to them maybe just maybe someone there will be able to help you find a doctor where your at that can help you. It sounds to me like you have nothing to lose by trying it. I know that places like Mayo Clinic and John Hopkins and a bunch of other outstanding medical institutions treat patients from all over the world. So just maybe they can help you to.

Kahri I am sorry for everything you are going through, I am glad you found us here on this forum, I think and I hope that you will continue to come here, and keep us informed on how you are doing. All of us here knows what it is like to live with chronic pain, and even though we can not cure you, we can listen to you and give you what advice that we may have, but you can always count on getting compassionate caring empathic support from us. Your not alone with your pain when you come here. I like to think of us as kind of like being family, we care about each other and support each other.  I hope that you to will find that true.  Again I want to Welcome you to Healing Well Chronic Pain Fourm, and I hope you will become an active member of our CP family!

White Beard

I wish you well, and hope that some how some way you will find a doctor that can help you!

rocckyd said...

You need a dr that will listen to you and find the source of your problem. Of course, you already know this. I hate that it is so difficult for you.

I could say I kinda already given up hope of a doctor, who would actually be able to say what is causing all this pain. Every doctor I've seen have been so clueless that seems there's none who would have idea what to do. I've been already eaten a truck loads of all sort of pills. And usually it's only pills that docs are able to give me as a help. I'm afraid that if I go to new doctor, they put me usually the same medication as before and I have to try all those over again to make the new doc belive that they don't help. And after going trough all those pills, they don't know what to do and I'm at the start again, only the difference of liver full of toxins.

rocckyd said...

I understand your fear about having the joints replaced. Some other statistics I was told-of those seeking treatment for TMJ pain, only 5% should have surgery. And of the 5%, only 1% need the joint replaced.

Yes I've heard something like that from doctors also. There were already couple who would want to replace my joints, but that was only because they couldn't figure anything else anymore. Since I couldn't be sure it's right choise, I rather declined from it at the moment. Silly to replace whole joint while you're not even sure what causes all this pain. And expecially if everything could go worse after surgery.

rocckyd said...

Most likely, your symptoms can be better managed with a combo of splints, physical therapy, and diet changes. It's a long and slow process, but for most people it's successful. But, you need to find a dr to prescribe these treatments. Pre-surgery, instead of pain meds, I found muscle relaxers the most helpful. Your jaw muscles are crazy powerful. When they spasm or lock down, it creates a HUGE amount of pain. For many people it feels like the pain is in the joint, but for many it's the muscles around the joint. Muscles or joint-it's still a lot of pain.

Many parts I didn't even put on my main story cause really, I have tried so many things it's very difficult to even remember anymore. But I've tried physical therapy, all sort of diets that should help decrease pain, I've done akupunkture, massages, natural medication etc. Sofar only massages and akupunkutre have had some help, but it's still so marginal that it won't change life. One polish doctor was thinking that it's only muscles that make insane joint pain, but even after his methods, I'm still in the same situation as starting.

rocckyd said...

I know I didn't give you any real answers. I just want you to know that I understand the pain you are feeling and how overwhelming it it. When your knee hurts or your hip, drs know what to do. TMJs? Not the same. I wish I could send my dr over to you. Please don't give up. It's not just in your head. Well, it is in your head....but you know what I mean. Your pain is real and there has to be somebody who can help you. Just don't give up.

I know there's not really anyone who could give me some answer to this, but you really have helped me. You've made me more sure about the replacement that it's a bad choise to do at the moment. My doctors didn't tell me as much as you told about it to me. Atleast I have one way I know shouldn't try, and that's one less in the way of finding real cure.
I'm trying not to give up but still, I think there's not really left anyone anymore who knows what to do. Maybe someone can make some less pain with some sick painkillers but still I have the same situation. Only positive outcome on this have been in Poland, but they still aren't able to truly help. But it means lot to me that they try, and people try here also.

White Beard said...
Kahri you are so young to have to experience everything that you have, I know how frustrating it is to be labled that it is all a mental problem when it is not. It is a easy and lazy way out for some doctors to do that, the only problem with labeling a patient like that is the label usually sticks and then it is very very difficult if not impossible for the person to get the real problem diagnosed and treated!

Some Polish doctors here said also it's that those doctor doesn't really care what happens to patient and put just everything to mental it's totally lazy solution for the problem. And for this labeling, as I answered to one post, I can't even return to home in Finland cause I won't get any help there as long as the mental label is on me. And while the "solution" the pain clinic gave was so simple, no other doctors in Finland try to find some more accurate diagnosis.

White Beard said...

Have you tried googling the internet for doctors and treatment in other places in the world, May I suggest that you try Googling Mayo Clinic or something like that there are many others John Hopkins, anyway see what they offer in the way of treatments for conditions like yours, and maybe E-mail their clinic, or send them a letter explaining your problem, and asking for help and suggestions on what can be done. Tell them what you have told us, be honest, if you can't go there to them maybe just maybe someone there will be able to help you find a doctor where your at that can help you. It sounds to me like you have nothing to lose by trying it.

I really am going to try that out. I have no idea what are these places you recommend but it's worth a shot. It's just difficult me to explain this while I don't even know what is going on. Something or many things are causing this sick pain but none can put finger on it. Somehow I have the feeling that in Finland they didn't even try to find real cause. Just when they didn't know what to do, they kicked me out explaining there's no more they can do. Atleast Polish doctors try to find something to go forward with, not just totally abandoning.

White Beard said...

Kahri I am sorry for everything you are going through, I am glad you found us here on this forum, I think and I hope that you will continue to come here, and keep us informed on how you are doing. All of us here knows what it is like to live with chronic pain, and even though we can not cure you, we can listen to you and give you what advice that we may have, but you can always count on getting compassionate caring empathic support from us. Your not alone with your pain when you come here. I like to think of us as kind of like being family, we care about each other and support each other. I hope that you to will find that true. Again I want to Welcome you to Healing Well Chronic Pain Fourm, and I hope you will become an active member of our CP family!

Thank you for all this support. Atleast here is many who are trying to keep hopes up. While I've seen an army of doctors who say they can't help me it's nice to try to think there still might be a happy ending with this.

Just have to find some way to get the strength to go to new doctors and try to find the solution. After so many years I'm so totally sceptic and afraid of doctors. They mostly have done more harm than good.

Post Edited (Kahri) : 12/4/2012 12:40:10 AM (GMT-7)

I'm very glad you have found us and hopeful you will stay. The us media that was mentioned (especially Oprah Winfrey) is a very good idea. There is also a Dr Travis Stork ( I think that is correct) and perhaps Dr Phil McGraw that you can find much about online. These are not bad people out to ruin you. They are American celebrity people who try to help others. Oprah even does things like open all girls schools and provide all the money for the girls in another country. She is a very giving person. You can probably email your story to all of them and perhaps they can find a way to help. You would be amazed at the help some of the very rich celebrities are willing to give to ordinary people from all over the world.

I have to admit I would not recommend these things if you were in the us because we have so many good medical facilities....like Mayo clinic and others. I only make this recommendation because you seem to be in a place where you need major help and these people have the resources to get it for you.

Please keep in touch and let us know how you are doing.