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sealover 08-06-2004 10:50 PM

How do I deal with chronic pain?
Since last November, my left foot has been in chronic pain due to an injury and permanent complications due to cortisone injections. I am not taking pain meds, as my podiatrist says that no pain med will take away the pain because the area of pain is on the bottom of my foot which I bear weight on. I am taking an NSAID, but it does nothing for pain. I apply Lidoderm patches, and they help a little with some nerve pain, but I still have bone and muscle pain.

Well, I'm having a hard time physically and emotionally because of the chronic pain, and I have a loss of independence in that I cannot be on my feet for long periods of time like I used to be able to before I hurt my foot. I wouldn't be so sad if this problem was something that would heal in time--I would even be happy if I was told that my foot would be better in 5 years! Unfortunately, what I've been left with (due to cortisone) is a permanent, painful condition.

My foot feels fine when I wake up after a long sleep, but when I start walking, the pain starts up--every day. Often I don't feel like getting out of bed because I know that when I start walking, the pain will begin. I do try to go out and also run errands, but my foot always gets in the way of my activities and I end up having to sit down and rest.

I don't know anyone, except one cousin, who has chronic pain. Even my aunts and uncles in their 60's through their 80's don't have chronic pain, so I feel alone.

How do you all cope with the emotional and physical side of chronic pain? I'm young and I don't know if I can live like this for the rest of my life. How do I cope? I've never experienced chronic pain like this before last November, and I am having a very tough time handling what has happened to me. I feel like I've lost a part of myself and I am also angry because what happened to my foot could have been prevented and I would be fine today. There are many times when I don't feel like living anymore, and I just wish I would die because I cannot handle this painful problem with my foot, but my faith in God keeps me here.

I hope someone will write a message back and let me know that I'm not alone in going through these problems.

it never ends 08-07-2004 12:10 AM

Re: How do I deal with chronic pain?
I hear you! I know exactly what you're saying SeaLover. Every single day, I run the gamut of emtions from utter despair to stupid hope. I was raised to be a lady, and people keep saying to me, "You look OK to me..." because I refuse to show my pain. I may be limping and grimacing a bit, but they don't see me crying and shaking with rage and sorrow and pain and fear all at the same time. ("Will this go on forever? How will I stand it?")

All I can say is keep on searching for answers. The last time I saw my pain doctor, he gave me some topical Ketamine. It took almost all the pain away from the arthritis in my knee. The inner bone on bone pain was still there, but it was curiously endurable without all the other outer pain.

New things are being discovered every day. We are the grown-ups now, whether we want to be or not. The rest of the people are just kids at play. If I won the lottery today, i wouldn't waste my time on 'stuff'! I'd go out and start helping every battered wife, every homeless person, every disabled person, every person in pain I could find. We know what matters: a smile, a shared 'conversation' across the internet, a kind word of encouragement for someone who needs it. Keep your spirits up. I'll pray for you.

sherry47 08-07-2004 08:15 AM

Re: How do I deal with chronic pain?
[B][COLOR=Navy][SIZE=3][FONT=Comic Sans MS]Sealover,

I so identify with you. My faith in God is the only thing that has kept me here. I am 32 and will be in chronic pain for the rest of my life. I even told my husband I cannot imagine living another 40 years hurting like this. All I can tell you is to take it day by day, sometimes even minute by minute. Pray, and then pray some more. It has taken me 3 years to come to terms with this. I use to ask God why? I have now come to terms with it and figured that there is a reason for this and that God does know what I am going through and He has not abandoned me. I have been through a lot in my 32 years. I lost a son in 96. God has been there through all of it. I'm not going to lie to you, I still have days when my faith may waiver. That's when I need to pray harder. God also sends the comfort I need. If you want you can look up a post I made just the other day. God sent me comfort in a very special way. It is on the thread entitled hey s gibson are you ok. I think it's on the last page of the thread, but I posted it on Wednesday so you can look for it by the date. I'm so sorry you are experiencing this pain. My mom had, and I emphasize HAD, bone spurs in her feet. It was so painful for her that some days she could not even walk. Well, our church (Southern Baptist) had a special prayer service and anointing with oil. My moms feet are healed. I do believe that God still performs miracles. Our church has prayed for me also, but I have accepted that sometimes Gods answer is not now, or even no. There is something He needs me to do or someone He needs me to come across or something during this trial of mine. I may need to minister to someone in one of the many doctors offices I visit. I don't know.

I don't understand why medications couldn't make you more comfortable. I don't understand your doctors view on that. Have you considered getting another opinion? Ask your podiatrist to refer you to a pain management doctor. I really think a pain management doctor would have something to help you even if it isn't medicine. You should not have to just suffer with something like this. No, I don't think a pain management doctor can make you pain free, none of us CP'ers are ever going to be pain free barring a miracle straight from God. But, reducing the pain is possible. Getting your levels down to where you have a decent quality of life is possible. There is help out there. Does your insurance require referral? If it doesn't then you can find your own pain management doc. Even if it does require referral it doens't mean you have to be stuck with the first PM doc your podiatrist sends you to. If the first PM says he can't do anything for you, ask your podiatrist to send you to another PM. Please keep us informed. We do care. This is a wonderful board with wonderful people on it. We are here for you when you need to vent, or just need a shoulder to cry on. Take care, I will be praying for you.

Take care.

God Bless,
Sherry :wave: [/FONT] [/SIZE] [/COLOR] [/B]

sealover 08-07-2004 10:49 AM

Re: How do I deal with chronic pain?
I just wanted to check back and say thanks for responding to this thread with encouraging words. I will write back and "chat" and answer your questions, Sherry, when I'm feeling better, hopefully within a few days.

Just wanted to say that my Mom and my Aunt brought me to a Christian prayer group and they prayed over me and rubbed holy oil on my foot. I have been praying since this whole nightmare started with my foot for God to please lay His healing hands on my foot. I also pray for God to help others who suffer. I would like to believe that God hears my prayers and that something good can come out of this pain.

Well, I need to go to bed and try to rest.

chriztene 08-07-2004 11:08 AM

Re: How do I deal with chronic pain?

What a lovely heartfelt post<3..Thank you for the post, it really is what I needed to read. I, too, believe in the power of prayer. My heart goes out to all who suffer, especially those of us who face chronic pain each and everyday.

twisten 08-07-2004 12:00 PM

Re: How do I deal with chronic pain?
Sealover, I'm sorry to hear your doctor is not being much help to you. It is very frustrating to deal with pain on a continual basis. I think your doctor has done you an injustice in not trying to help you more. I agree with Sherry that you should try to find a new podiatrist to help you better. Do be careful with those Nsaids as some of them can cause major problems with your gastrointestinal tract.

Kissa 08-07-2004 12:56 PM

Re: How do I deal with chronic pain?

I think many of us can identify with your situation, it is very difficult to say the least. I have had CP since I was young, age 10, I am now 38.
Everyone reacts differently and deals with it differently and there is no one sure way, you have to try many things overtime and see what works best for you.

I suggest you seek out a Pain Management specialist. Like the others, I can't comprehend why your podiatrist tells you nothing will stop the pain. He can't know this for a fact unless he has the same condition and has tried every method available to man. If you are able to definately seek someone out to assist you.

Some of the basic things many of us have to go through are as follows, generally before seeking out a PM but each case is different.

Psychological services - this is going to help you in many aspects, the real key to this is finding someone who understands and helps treat pain management. As your primary care doctor if know anyone in your area. You also need to be open and receptive to this. You will learn how to cope with the pain, accept it and sometimes there is medication involved. Learning out to focus on things, meditate and relax are really key ingredients to survival.

Pain Management classes - These are not effective for everyone, but most folks do get or learn at least one technique to deal with pain. They are often similiar to that of seeing a psych but they add the physical things such as exercise, stretching and the like.

Support groups - call around to various hospitals in your area and see if there aren't any chronic pain support groups, being able to talk to others and gain support as well as give it will go a long way in coping with what is wrong.

Physical therapy - you might want to see if there isn't some sort of therapy that might help your situation. It is worth a try.

As hard as it is, you have to try to keep positive. I know how can one do that? You can't, not every single day of your life, it's almost impossible with CP. But if you just try to keep remember it could be worse, there are others who are worse off than you it does help you to maintain your sanity on some days.

If you do seek out a PM chances are you will be asked if you have or are you willing to try some of the above methods. PM's don't always give out medications freely, they want to be sure you actually need it and that they are often the last resort.

It certainly wouldn't hurt to get a second opinion from another podiatrist. I never trust one doctor completely without seeking a second opinion in such serious matters, such as a doctor telling you there is nothing that can be done. Sometimes there is and maybe your current doctor just isn't aware of different treatments.

Good luck to you, I hope you find the support you need.

sherry47 08-07-2004 06:20 PM

Re: How do I deal with chronic pain?
[B][COLOR=Navy][SIZE=3][FONT=Microsoft Sans Serif]Thank you Chriztene,

I appreciate your kind words. God has brought me through so much in my life. There have been times when the doctors have told my family, "she should not be here, she just should not still be alive". They have told them that nothing they did saved my life. I was told in 1997 that I would never walk again, may lose my leg and certainly would never have anymore children. That was January of 97. I returned to work, walking by the 15th of March, same year. That was one of my miracles. The next one was born May 21st of 98. His name is Joshua and he was a preemie. He also should not have lived, according to doctors. I lost a son in 96 and God knew that I could not survive that again. We named him Joshua because he was a little fighter right from the time of conception. I was advised to abort him and I said absolutely not. My doc said well I can't promise you that you will survive this pregnancy, much less the child. I said, I trust God. He is 6 years old now. He's a beautiful, wonderful, loving little boy. God has given me a lot to be thankful for over the years. My first child almost died during delivery and then that night her heart stopped. She will be 14 the 20th of this month. My second child, I had emergency surgery when I was seven months pregnant. He is 10. My OB told me my body was not built to have children, that any child I had that survived would be a miracle. I have 3 living miracles and one very special son in heaven that I will one day see and hold again. You see, God has blessed me in so many ways. That's why I feel like he is using my current condition for something. I gladly share what He has done for me.

Ok, I'll stop.... I get started and I'm like the energizer bunny, I could go on and on when talking about what God has done for me.

Take care.

God Bless,
Sherry :wave: [/FONT] [/SIZE] [/COLOR] [/B]

Snails 08-08-2004 11:44 AM

Re: How do I deal with chronic pain?

I really feel for you and emphathize with you; chronic pain is a terrible burden especially when it strikes so young. I am glad that you found this board, however, you can tell by the responses so far that it is full of caring support. I think Sherry and Kissa gave you especially great advice about finding a pain management doctor and better, more compassionate care. You should not be stuck with a doctor who shows little concern for your terrible plight. Also, treating the emotional and psychological effects of the pain is at least as important as treating the physical pain. I don't see how any CP patient can be free of depressing thoughts, at least, if not outright depression, particularly when we're so young and the pain seems incurable (and especially when it could have been prevented!!). I am 22, and had my wisdom teeth removed at the start of my senior year of college. I am so angry at agreeing to this unnecessary surgery which has resulted in severe nerve pain, very similar to tri****nal neuralgia. These days, anytime my pain medications begin to wear off, I am hit with almost constant 10/10 pain. It is so hard not to think into the future, about all your dreams that may no longer be possible, but we do have to try our best to take it one day at a time. It helps to be proactive with documenting your pain and medical care, seeking better and more varied treatments, and researching your condition. In the meantime, don't hesitate to rely on this board for support--we are all wishing you the best!

Take care,

sealover 08-12-2004 06:34 AM

Re: How do I deal with chronic pain?
Thanks again for the caring responses! I'm so sorry to read about the pain that you all are going through.

To answer some of your questions. I have been to 5 podiatrists total, an orthopedic surgeon, and a neurologist. Yesterday I had the appointment with the 5th podiatrist for another opinion because he's supposed to be really good...although he agreed that the atrophy on the ball of my foot was caused by cortisone injections, he didn't understand why I'm in so much pain and he said he couldn't help me...I was so disappointed. The orthopedic surgeon didn't give me the time of day because my foot doesn't require surgery...he said "I don't treat chronic pain conditions." Well, at least he could have answered some of my questions for the $325 he charged my insurance company for 10 minutes of his time! :o He referred me to a pain clinic, and the clinic was supposed to contact me, yet it's been over 2 months and I've not been contacted even though I called the orthopod's office to put in another request and even though the neurologist said just last week that he'd get involved and have the pain clinic contact me. The neurologist was very nice and helpful. I have been in physical therapy off and on for the past 8 months. I do have a podiatrist that I go to and he is understanding, though I have had to seek the other opinions for my own good.

Ugh! I'm just tired of going to all these doctors, and sometimes I feel as though I know more than they do about my foot condition.

Just to vent: Over the weekend, I had about 3 days without pain!...I was at home and wore slippers and took it easy on my feet, and I felt no pain. However, when I had to go out on Tuesday, the pain started up again and hasn't stopped, except when I sleep. Last night I came home already in pain, and all of a sudden there was an emergency situtation in the house that kept me up and on my feet all night long. I have yet to sleep. Now my pain level in my foot is an 8-9. My forefoot is burning and the bone pain is horrible. I don't know how to get through this pain except to try to fall asleep.

I have to say that some people, doctors included, don't understand what it's like to have chronic pain. If they can't see outward signs of pain like open wounds or swelling, then it's even harder for them to empathize with us. Of course, I'm not saying everyone is like this.

I don't mean to go on and on about my problems. But I guess I'm at a point where I'm having a hard time with all that has happened to me and need to reach out on this board. I truly don't know how I'm going to be able to live with chronic pain.

Kissa 08-12-2004 07:36 AM

Re: How do I deal with chronic pain?

I really feel bad for you and also at the same time totally understand your situation.
I've been through quite a few surgeries, most needed, a few not needed and a while ago I was having more pain than ever in my hip and various other body parts. I saw quite a few really good hip doctors after my hip was replaced this last time 11 years ago (the doctor who did the hip is no longer in practice, he retired) at any rate all these doctors kept telling me there's nothing wrong with the hip or knee etc.

I got so depressed, I wouldn't say I was suicidal, but I was very very depressed, more so than I"d been in years. The one thing that got me through it was my wonderful rhuematologist suggested I seek out a pain management course and so I did. I can't say I had this "miraculous I've been healed" situation but it did help some. I learned to do the focusing/visualization techniques in addition to breathing exercises as well as learned just how important it was to have a qualified mental health doctor to help me cope.

I did OK for quite a few years, the pain wasn't gone but I did learn to deal with it a bit more effectively. I sustained probably 5 or so years until the pain got worse and I went on my search for a pain management doctor. I went to various doctors all over the area where I live, several shut the door on me, told me there was nothing they could do to help me (hello?? isn't it their job to control pain?) because I was "too young" or because I wouldn't have the coritsone injections. It was so heartbreaking for me and my family. I went on for years like this. My rhuemy tried to help me the best he could with meds that he felt comfortable in prescribing, we tried all kinds of crazy concoctions. I went on anti-depressants and the like and just accepted the fact that no one would ever help me and I would honestly die this way, suffering. Why couldn't anyone understand that this was so horrible and everyone "felt bad" for me but refused to help.

Needless to say, in February I had my neck fused due to 4 levels of cervical herniations that ended up crushing the spinal cord. I was having some weird side effects so I decided to search the net one day to see if others were in a like situation. Lo and behold I found this board. I discovered this section of the board and began to realize again that this was unfair, that others were getting the help the felt they needed and I wasn't so I posted a message asking how to find a doctor and some basic questions and decided to begin my search yet again for someone to help me. I got lucky this time and found a PM very close to me, made an appointment and began working my way to finally getting the relief I needed.

The moral of the story is, if there is one:

- Orthopeadic surgeons are not pain management doctors they only like to operate
- Not all doctors are created equal, especially when it comes to pain management
- Psychological services do help, we all suffer from depression be it mild to severe when having CP
- Some alternatives are worth trying (meditation, focusing, etc..)
- Never accept that there is no hope for you or that nothing can be done
- You aren't the only one who suffers and that can be comforting knowing you aren't alone in this. No one else can understand what you are going through unless they too have gone through or are going through what you are.
- Reach out to those in a like situation and learn from them (as on this board) and they will support you the best they can to help you through it
- [b] never ever give up![/b]

Pick up the phone and call the PM clinic didn't call you back or call your local hospitals and start looking for a PM on your own. Doctors offices forget all the time to return calls, so it's up to you to take charge of your pain today! You might not have much luck the first few times you talk to doctors but don't ever give up. Help is out there you just need to find it! Trust me there are few better feelings in this world than finally finding that PM who is willing to help you and is understanding. You may never been totally pain free but you can get it to a level that it is acceptable and you can function

Best of luck to you and just know we do understand and do care and it's ok to vent, thats what we are here for!


laurawithcats 08-13-2004 03:09 AM

Re: How do I deal with chronic pain?
Hi all - I'm new and it's great to read everyone's posts.
I've been dealing with chronic pain for seven years (not long or too long, depending on how you look at it). I can share some of what has helped me.
First, I so agree with Barbie that you have to take your care into your own hands. Be your own health manager, eliciting the expertise available to you from doctors, nurses, psychologists, physical therapists, message board participants, etc. But never forget that YOU are in charge. You are allowed to say no, to walk out, to ask thousands of questions, to demand explanations - whatever it takes to get the care you deserve. Call as often as you have to in order to get an appointment! And, like Barbie said, never accept that there's nothing to be done. There are so many medications and therapies and (dare I say) surgeries and alternative treatments to try. It's up to you how conservative or agressive you want to be.
Please understand, though, I'm not advocating doctor shopping, hoping you get the answer you want to hear regardless of whether it's reasonable. You have to keep your head about you and not go after inappropriate treatments (for instance, I know someone who insists on the latest surgeries even though they're usually not indicated for his particular condition). Be informed, and never make big decisions when you feel desperate. Wait for a moment of clarity.
Another thing that's helped me is avoiding "pain behavior". I used to limp because I was afraid to increase my leg pain. Then, I realized that my pain was constant and bad whether I walked straight or limped. My leg isn't weak or damaged, it just hurts. It took a lot of practice, but I stopped limping. I had to determine what behaviors (like resting, or taking meds) actually helped me, and what behaviors had no effect except to make me and the people around me more miserable (like limping, moaning, or being grim). I'm not saying be a pollyanna. I still cry and feel sorry for myself sometimes, but I try not to let pain control me all the time. Instead, I try to control the pain.
I've also changed my expectations about housework (this may sound crazy, but I was crazy once). Now, I don't mind so much if the place isn't perfectly picked up and thoroughly cleaned. I've learned to live within my means, so to speak!
I've also had to change my attitudes about medications. Narcotics get a bad rap, but they and other meds can improve your life drastically if they're called for. It's actually rare that people in severe pain become addicted to narcotics used to control that pain. You may get a physical dependence of sorts, but in my experience that's just a matter of gritting your teeth through a few days of discomfort to get over. Of course, that's just my experience, I suppose someone with addiction problems may react differently.
Lastly, and perhaps most importantly, I found a really great pain management doctor who I've stuck with for 6 years. I know he takes my pain seriously, I like him personally and respect him professionally, I keep up a good relationship with his staff (a fruit basket or at least a card at the holidays does wonders here), and I feel comfortable asking for anything I need or think I may need.
What HASN'T helped me is: times that I've let other people's attitudes, especially ignorant doctors, make me feel crazy or weak. Also, ANGER. My pain is always at its worst when I'm angry so I strive for peace. Also, law suits - focussing on who's fault my pain is or who should pay or what-not has only caused extra stress - it turned out not to be worth any amount of $ or vindication for me. Also, regrets - I can look at lots of events that led up to where I am now and wish things were different, but where would that get me?
So, that's my sermon. I'll try not to do it again, but I really felt good reading what everyone else wrote. I think this is a good group of people to look to for support and I hope to be counted in that group, too.
My next post may be just a bunch of complaints, though, so don't expect a perpetually positive pain patient, please!

Kissa 08-13-2004 09:31 AM

Re: How do I deal with chronic pain?
Welcome aboard Laura!
You're advice is very sound and well thought out and I agree whole heartedly with you! Feel free to always offer your advice/wisdom and even rants as it is good for everyone as a whole including yourself!

I do agree that anger can definately make the CP more severe or problematic and it solves nothing. I was angry for sometime and it got me nowhere fast, in fact I was in more pain than ever. One has to let go of it and stop focusing on the why's and how's of it happening but instead focus on what can I do now to get through this and have some sort of quality of life!

laurawithcats 08-13-2004 12:18 PM

Re: How do I deal with chronic pain?
Thanks Kissa!

I did forget one really important thing, though - psychotherapy. It's been like gold to me.

I also didn't mention that I was on-line at 4 in the morning because the pain was keeping me up! It's an interesting journey.

You all are so great to read. I'm mostly just gathering all sorts of good stuff right now by checking out this board. I wish I'd found it years ago, but didn't I say no regrets? ;)

Kissa 08-13-2004 12:25 PM

Re: How do I deal with chronic pain?
I'm big on the psycho therapy as you can tell with most my posts that have similiar questions on controlling the pain. I also advise any loved ones (spouse, children) to partake as well so they too can understand what it is you are dealing with daily.

Pain management isn't just about pills, it's an all encompassing phsyical/emotional/medical method that sometimes folks aren't aware of or forget.

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