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The usual stuff

Posted by Fuss budget on 6/06/01 at 21:15 (050113)

I almost never write into the support side of this message board. I'm always scanning the other boards (as our most of us) with hope for some new magical cure.
I was just diagnosed with TTS a couple days ago after having suffered PF for two years, with the hope that it will go way a couple months from now. My doctor told me two years ago I'd be running again in six months. I have to say, I sort of hate him for telling me that because it set me up for that much more disappointment. Why do they make promises that they can't keep?

Anyway, the recent TTS diagnosis has completely blown me out of the water morale-wise. Did I mention also that six months ago I was sent home from work for bilateral arm injuries? I'm using voice recognition (painfully slow) to post this message. I guess they say when it rains it pours. I just keep hoping for an umbrella and never seem to find one.

You try and talk to your friends about what you're going through and they just don't get it. They want to help you but they have no way to understand the kind of pain you're in. I guess the worst part is, the TTS diagnosis is really a promise for lifelong pain. After having spent the last years trying to hang onto some shred of hope that the pain would go way, it's really hard to accept that it won't. I find myself lying awake at night thinking about all the things that I will never do again. I realize there are people out there with worse conditions than ours so self-pity is rude and arrogant. I don't mean it in that way. I have a stack of sample antidepressants some therapist gave me a year ago. I never took them_ I don't bother with them because, the reality is, taking some additional drug isn't going to change my circumstances. And it's my circumstances that are making me so depressed. No drug to affect my mood is going to make me able to walk through grocery store again.

Anyway, I realize this board is full of other people stuck in chronic pain and nobody can stand a whiner. I've been dumping its all on my mom to last few days (thank God for her). I guess I just needed to write in to others in the same situation. I need help. Sometimes I don't know how I'm going to get through this. I guess we really never know how were going to get through some of the hardest challenges of our lives.

The thing is, I'm sitting here on my computer and I can't decide which of my limbs hurt more. If I so much is right a couple checks to pay my own bills, my arms are in screaming pain for weeks. You hear so much about carpal tunnel syndrome, you become desensitized to what it means. When you live with it every day, you can never forget what it means. Then one day, they tell you have it in your feet as well and that they're 'sorry'. You look around in the world for someone who understands or can make it go way. You know it won't. And you try to go along living your life and acting as if you're not dealing with this. Most of the time, it's all I can do to not be in tears in front of people. I want it to go away so badly. I look forward to the 50 some odd years I have in front of me, and can't imagine how I'm going to do it. Between my hands and my feet I'm between 80 and 90 percent disabled. But, no one sees anything wrong with me. Somebody the other day even stopped me in a parking lot when I pulled into my handicapped spot and challenged me on my right to park there.

I'm sorry for bothering you guys with my being blue. I just don't know where else to turn anymore.

Re: I might be able to point you in the right directon.

BrianG on 6/06/01 at 21:45 (050117)

Hi Budget person,

Can I ask you a fw questions about your delema. Is your main problem because your limbs refuse to work? Or is the problem that you don't want to move your limbs because of the pain? If the pain is the issue, I may be able to point you in the right direction. I'm not promising any kind of miraculous recovery, but I think with the proper dose of adaquate pain meds, you'll probably get some parts of your life back. It is possible, all you need is the key, which in this case is some web sites I can send you. It's a big commitment, as it involves legal narcotics, prescribed by compassionte doctors, hopefully in your area. If this interests you, let me know, otherwise I'll back off. I'm not a drug pusher or anything, I just happen to have the 'key' to some pain relief. There are even programs available for people that are down on their luck and cannot afford to pay for the meds. Yes, some of them are quite expensive. Let me know if your interested.

BCG

Re: The usual stuff

wendyn on 6/06/01 at 22:37 (050122)

FB - you've come to the right place.

Even if we don't have all the answers - a lot of us have to deal with similar struggles and frustrations.

You say you just had a TTS diagnosis a few days ago - can you give us a brief history to bring us up to date on what's happened with your feet?

Re: I might be able to point you in the right directon.

Donna M on 6/06/01 at 22:57 (050123)

Hi FB, you might ought to try some of those antidepressants the dr gave you, because you really are feeling down and that is very evident in your message.
I/we all understand what you mean about friends trying to understand, but not really being able to! It is hard for almost everybody to understand what they can't see! I sometimes think people must figure I am trying to get attention, or just to whine to be whining! If they only knew, but I hope they don't have to find out from experience!!
You know I think most people mean well, but everyone, including family, are wrapped up in their own lives. Most peoples lives change from day to day, unlike ours which S.S.D.D. So when we talk to our frinds and family and they tell us about something new, all we have to comeback with is the same pain we continue to experience.
Get back with BrianG, maybe he can help you to find something to alleviate some of your pain. Most of us take something whether it be for pain or an antiinflammatory or both if we have it!!
I hope you get some relief and get to feeling better. You are welcome to come here and whine any time you like!! :)
Donna

Re: We're here any time

Cynthia D on 6/07/01 at 06:01 (050131)

Dear FB: I read and re-read your story this morning. I am so sorry that this happened to you. Please whine to us any time, we're all in this together.

How did your doctors diagnose TTS, and isn't there anything that can be done to help with that and carpel tunnel syndrome. 50 years is a long time, and I'm sure a lot of new innovations will come along. What kind of tests have you had done?

All my best to you that you will have a better day today. My shoulder is here for you to cry on any time! Feel better.

Re: The usual stuff

john h on 6/07/01 at 09:18 (050138)

fuss budget; i would seek a second and third opinion on tts. this is a most difficult diagnosis. you can get false positives on some of the test. i had the tts surgery after a couple of positive test and even my doctor said this would be very much a shot in the dark. my biggest concern was would the surgery make me worse. it did not but it did not make be better either. wendy is sort of our resident guru on tts and i think she had improved over the past two years. there are certainly things you can do to help the condition if you have it and things you should not do. ok wendy step up to the table.

Re: The usual stuff

GinaC on 6/07/01 at 11:30 (050157)

Hi,
I have had PF in both feet for over 4 years, TT in both feet for about a year , Carpal tunnel in both hands, ulnar nerve entrapment at both wrists, and tendonitis in the right elbow/shoulder. It helps me to remember that none of these conditions are necessarily permanent or unchanging. I did have surgery on my left foot and I think it is better; my right foot has never been as severe, thank goodness. The carpal tunnel pain seems to change over time; sometimes worse, sometimes better. I also understand that the carpal tunnel surgery is fairly simple with generally good outcomes. Since right now I'm in a 'good' phase with the CT, I'm not rushing into that surgery. I look at all of these conditions as treatable or manageable, although they surely are a royal pain to have to deal with. I would certainly want all this to 'go away' but I guess I've accepted that it may or may not improve. I do try to do what I can to help it improve and have the medical bills to prove it! It helps me to think I'm 'working towards' improvement, doing what I can to get there, whether or not I succeed. I tell myself that these arm/feet things are not what's going to kill me; it's the high blood pressure and high cholesterol and family history of cancer that will. But there, again, I take meds for the blood pressure and cholesterol and do what I can for cancer prevention.
There certainly are times when I feel down and depressed...if those times persisted, I would definitely try anti-depressant meds to get me through. Just do whatever you need to do to get yourself to a better place, then keep going from there. Sorry to ramble on....Gina

Re: The usual stuff

JudyS on 6/07/01 at 23:37 (050224)

Oh dear Fuss Budget, this is one of your many PF Board Moms speaking - I think you could use a few today.....what you're going through is NOT necessarily permanent - even though it feels that way right now! So let's see what you can do to get your chin up higher than your ankles! One; it's not necessarily permanent. Our dear Wendy has gotten much better with her TTS, my husband's was aleviated with orthotics, and there can also be a surgical fix as well as very effective pain-management programs. Ok, got that one. Next, Carpal Tunnel - MOST folks are cured of it! It's tendonitis, it's manageable after the inflammation is dealt with - but, as with all tendonitis, it takes care and time. You must be a really good, hard worker, to have it bilaterally. OK, got that one.
Last, go ahead and use those antidepressants (although you might want a fresh prescription...) - that's what they're there for and you're by no means alone - many many folks here have used them to get past these kinds of rough times and done very well. But a strong word of caution, take them completely according to direction. How, when and how much you take on a given day is extremely important. These are not just drugs to cover up your symptoms. You have a very real, physical issue, temporarily, right now with your blues and antidepressants help to tork the biology/chemistry back where it belongs. Antidepressants are not just 'feel-good' quick fixes.

Tell the guy in the parking lot to blow it out his ear. And you can tell him I said so!
The most important thing you can do for yourself is to gain a sense of control. Sit down and dictate everything you can think of about your tendonitis's........especially questions to ask your doc. Read everything you can, cull out the common denominators you find, use them as guides for your own TTS education, then store all you've read in a closet somewhere so you can't dwell on it. Focus your attention on your voice-activated computer and see how many tricks you can get it to do.
My doc told me I'd be running again too - and it's been over 2 years. However, the biggest reason it's been over 2 years is that I didn't follow treatment directions for the first year - I kept waiting for it to go away by itself. So, I caused it to become chronic. The very best thing I ever did when I realized, finally, that it wasn't disappearing, was to educate myself and take charge of my recovery. The next good thing I did was stick with this board and lean a bunch on my pals here - it really works! I've gotten very slowly better - and still have setbacks. But I'll tell you, the self-education and the refusal to keep feeling like a 'victim' was what really did it for me.
OK, I've rambled on too long - as us Moms tend to do when someone feels blue! Trust me though, you're in the right place. You get to feel blue, and when that passes, and it WILL, you get to be in charge.

Re: The usual stuff

Laurie R on 6/08/01 at 00:34 (050227)

Hello Fuss Budget , Welcome !!!! We are all here for you .... I am so sorry you are having such a hard time. LET IT OUT HERE...We understand ... Things will get better ....My very best to you ,Laurie R

Re: The usual stuff

john h on 6/11/01 at 09:37 (050437)

i think the best thing to wrap your mind around is that people can and do get better from PF. even people who have had it for years.

Re: I might be able to point you in the right directon.

BrianG on 6/06/01 at 21:45 (050117)

Hi Budget person,

Can I ask you a fw questions about your delema. Is your main problem because your limbs refuse to work? Or is the problem that you don't want to move your limbs because of the pain? If the pain is the issue, I may be able to point you in the right direction. I'm not promising any kind of miraculous recovery, but I think with the proper dose of adaquate pain meds, you'll probably get some parts of your life back. It is possible, all you need is the key, which in this case is some web sites I can send you. It's a big commitment, as it involves legal narcotics, prescribed by compassionte doctors, hopefully in your area. If this interests you, let me know, otherwise I'll back off. I'm not a drug pusher or anything, I just happen to have the 'key' to some pain relief. There are even programs available for people that are down on their luck and cannot afford to pay for the meds. Yes, some of them are quite expensive. Let me know if your interested.

BCG

Re: The usual stuff

wendyn on 6/06/01 at 22:37 (050122)

FB - you've come to the right place.

Even if we don't have all the answers - a lot of us have to deal with similar struggles and frustrations.

You say you just had a TTS diagnosis a few days ago - can you give us a brief history to bring us up to date on what's happened with your feet?

Re: I might be able to point you in the right directon.

Donna M on 6/06/01 at 22:57 (050123)

Hi FB, you might ought to try some of those antidepressants the dr gave you, because you really are feeling down and that is very evident in your message.
I/we all understand what you mean about friends trying to understand, but not really being able to! It is hard for almost everybody to understand what they can't see! I sometimes think people must figure I am trying to get attention, or just to whine to be whining! If they only knew, but I hope they don't have to find out from experience!!
You know I think most people mean well, but everyone, including family, are wrapped up in their own lives. Most peoples lives change from day to day, unlike ours which S.S.D.D. So when we talk to our frinds and family and they tell us about something new, all we have to comeback with is the same pain we continue to experience.
Get back with BrianG, maybe he can help you to find something to alleviate some of your pain. Most of us take something whether it be for pain or an antiinflammatory or both if we have it!!
I hope you get some relief and get to feeling better. You are welcome to come here and whine any time you like!! :)
Donna

Re: We're here any time

Cynthia D on 6/07/01 at 06:01 (050131)

Dear FB: I read and re-read your story this morning. I am so sorry that this happened to you. Please whine to us any time, we're all in this together.

How did your doctors diagnose TTS, and isn't there anything that can be done to help with that and carpel tunnel syndrome. 50 years is a long time, and I'm sure a lot of new innovations will come along. What kind of tests have you had done?

All my best to you that you will have a better day today. My shoulder is here for you to cry on any time! Feel better.

Re: The usual stuff

john h on 6/07/01 at 09:18 (050138)

fuss budget; i would seek a second and third opinion on tts. this is a most difficult diagnosis. you can get false positives on some of the test. i had the tts surgery after a couple of positive test and even my doctor said this would be very much a shot in the dark. my biggest concern was would the surgery make me worse. it did not but it did not make be better either. wendy is sort of our resident guru on tts and i think she had improved over the past two years. there are certainly things you can do to help the condition if you have it and things you should not do. ok wendy step up to the table.

Re: The usual stuff

GinaC on 6/07/01 at 11:30 (050157)

Hi,
I have had PF in both feet for over 4 years, TT in both feet for about a year , Carpal tunnel in both hands, ulnar nerve entrapment at both wrists, and tendonitis in the right elbow/shoulder. It helps me to remember that none of these conditions are necessarily permanent or unchanging. I did have surgery on my left foot and I think it is better; my right foot has never been as severe, thank goodness. The carpal tunnel pain seems to change over time; sometimes worse, sometimes better. I also understand that the carpal tunnel surgery is fairly simple with generally good outcomes. Since right now I'm in a 'good' phase with the CT, I'm not rushing into that surgery. I look at all of these conditions as treatable or manageable, although they surely are a royal pain to have to deal with. I would certainly want all this to 'go away' but I guess I've accepted that it may or may not improve. I do try to do what I can to help it improve and have the medical bills to prove it! It helps me to think I'm 'working towards' improvement, doing what I can to get there, whether or not I succeed. I tell myself that these arm/feet things are not what's going to kill me; it's the high blood pressure and high cholesterol and family history of cancer that will. But there, again, I take meds for the blood pressure and cholesterol and do what I can for cancer prevention.
There certainly are times when I feel down and depressed...if those times persisted, I would definitely try anti-depressant meds to get me through. Just do whatever you need to do to get yourself to a better place, then keep going from there. Sorry to ramble on....Gina

Re: The usual stuff

JudyS on 6/07/01 at 23:37 (050224)

Oh dear Fuss Budget, this is one of your many PF Board Moms speaking - I think you could use a few today.....what you're going through is NOT necessarily permanent - even though it feels that way right now! So let's see what you can do to get your chin up higher than your ankles! One; it's not necessarily permanent. Our dear Wendy has gotten much better with her TTS, my husband's was aleviated with orthotics, and there can also be a surgical fix as well as very effective pain-management programs. Ok, got that one. Next, Carpal Tunnel - MOST folks are cured of it! It's tendonitis, it's manageable after the inflammation is dealt with - but, as with all tendonitis, it takes care and time. You must be a really good, hard worker, to have it bilaterally. OK, got that one.
Last, go ahead and use those antidepressants (although you might want a fresh prescription...) - that's what they're there for and you're by no means alone - many many folks here have used them to get past these kinds of rough times and done very well. But a strong word of caution, take them completely according to direction. How, when and how much you take on a given day is extremely important. These are not just drugs to cover up your symptoms. You have a very real, physical issue, temporarily, right now with your blues and antidepressants help to tork the biology/chemistry back where it belongs. Antidepressants are not just 'feel-good' quick fixes.

Tell the guy in the parking lot to blow it out his ear. And you can tell him I said so!
The most important thing you can do for yourself is to gain a sense of control. Sit down and dictate everything you can think of about your tendonitis's........especially questions to ask your doc. Read everything you can, cull out the common denominators you find, use them as guides for your own TTS education, then store all you've read in a closet somewhere so you can't dwell on it. Focus your attention on your voice-activated computer and see how many tricks you can get it to do.
My doc told me I'd be running again too - and it's been over 2 years. However, the biggest reason it's been over 2 years is that I didn't follow treatment directions for the first year - I kept waiting for it to go away by itself. So, I caused it to become chronic. The very best thing I ever did when I realized, finally, that it wasn't disappearing, was to educate myself and take charge of my recovery. The next good thing I did was stick with this board and lean a bunch on my pals here - it really works! I've gotten very slowly better - and still have setbacks. But I'll tell you, the self-education and the refusal to keep feeling like a 'victim' was what really did it for me.
OK, I've rambled on too long - as us Moms tend to do when someone feels blue! Trust me though, you're in the right place. You get to feel blue, and when that passes, and it WILL, you get to be in charge.

Re: The usual stuff

Laurie R on 6/08/01 at 00:34 (050227)

Hello Fuss Budget , Welcome !!!! We are all here for you .... I am so sorry you are having such a hard time. LET IT OUT HERE...We understand ... Things will get better ....My very best to you ,Laurie R

Re: The usual stuff

john h on 6/11/01 at 09:37 (050437)

i think the best thing to wrap your mind around is that people can and do get better from PF. even people who have had it for years.