How do I learn to cope with Chronic Pain???

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tmjpain
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Date Joined Oct 2008
Total Posts : 2022
   Posted 6/12/2010 7:08 PM (GMT -7)   
Can you please help me? I just can't get past this horrible pain. I am scared that the rest of my life will be like this. It is difficult to get out of bed and do something, even something that i would love to do or something that always made me happy. Like this evening I finished my gardening but i did not enjoy myself. i was just doing it and thinking i can't wait to get back to bed and put ice on my head. I have always loved doing my flower garden. I can't get enough energy to ride my bike, everything is so hard to do. I have a beautiful craft room waiting for me to organize it. All i can do is look at it when i walk by. I am so sad all the time. I don't know how to accept my pain, as it is too much to bear. i have an appt with a psychologist in July. I wish it was tomorrow. Can anyone give me suggestions. I am sure many of you have gone thru this or are in this phase as well.
 
Hugs to all of you
Wishing you a lpd.
   
SUZANE
      
 Chronic, severe and continuous bilateral temporal headaches since April 2000.
 Poor prognosis, seen thousands of doctors, been on dozens of meds and tried all forms of treatment with no success.
   May 2010 to present taking DM, dextromethorphan, 4x/day, to continue to reset the receptors, weaning off of oxycodone as it did not help with my pain, pain continues to be terrible every minute of every day!
  Feb to end of April 2010:3 cycles of IV Ketamine infusion via a PICC line and pump at home, this was to try to break the pain cycle by resetting the receptors
 Meds: oxycodone for breakthrough, cymbalta, vitamin D, B12, magnesium, omega 3, melatonin
 Profession: Part time registered nurse on Long term disability and applying for permanent disability thru CPP
 52 yrs old, female, married, two boys 19 & 21, live in Ottawa, Ontario, Canada
 
           


Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 6/12/2010 7:51 PM (GMT -7)   
Chronic pain is a horrible beast try and tame, but you have no choice.  You have a wonderful family that needs you.  First of all, are you taking an antidepressant?  It sounds are though you are experiencing some depression along with your pain.  If you are taking one, is it the correct dosage for your needs.  I assume you are going to a reputable pain specialist.  Have you gone to anyone who can help you with nonpharmacologial pain control techniques?  For example; controled breathing exercise, imagery, affirmations, rekaxation tapes etc.  They really do work.  Many of us have uncontroled pain.  You have to figure out a system to management it...once you have the appropiate medication....the rest is up to you.  I find keeping busy...helps me keep my minds off of breakthru pain.   Is your pain specialist helping you solve your problems?  If it time to consider an SCS or pain pump?  I have been in pain along time as with many of us here at HW, it is important that you have a good frame of mine.  A positive outlook.  I think the psychologist is a good step forward. 
 
Good luck.

Stella Marie   Chronic Pain Forum Moderator

Progressive neurodegenerative disease called Multiple System Atrophy, congestive heart failure, muscle spasms, muscle pain, neuropathy, & neuropathic pain, central sleep apnea, osteoarthritis, and 2 pain implants – intrathecal pain medication pump and an SCS (spinal cord stimulator). 

 

 



tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 6/12/2010 8:31 PM (GMT -7)   
Thanks Stella. SCS is spinal cord stimulator right? i don't think they do this for headaches though, do they? And can't quite do the pain pump because no medication helps my pain. Yes i am on Cymbalta for depression. I have done all those techniques with not great help for me. I have a problem sith little concentration and ver little memory.I guess what makes it so hard to accept is that this pain is so
severe, i just can't get pasted it. Anyways i did get out and do some gardening, but cried while doing it. and just not happy.
Tomorrow is another day.


take care
   
SUZANE
      
 Chronic, severe and continuous bilateral temporal headaches since April 2000.
 Poor prognosis, seen tons of doctors, been on dozens of meds and tried all forms of treatment with no success.
   May 2010 to present taking DM, dextromethorphan, 4x/day, to continue to reset the receptors, weaning off of oxycodone as it did not help with my pain, pain continues to be terrible every minute of every day!
  Feb to end of April 2010:3 cycles of IV Ketamine infusion via a PICC line and pump at home, this was to start resetting the receptors.
 Meds: oxycodone (weaning), cymbalta, vitamin D, B12, remedies from the homeopath
 Profession: Part time registered nurse on Long term disability and applying for permanent disability thru CPP which i was accepted
 52 yrs old, female, married, two boys 19 & 21, live in Ottawa, Ontario, Canada
 
           


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 6/12/2010 8:58 PM (GMT -7)   
Suzane

Have you tried googling headache treatment centers. or any thing like that? Or maybe googled some of the major medical treatment centers and checked them for headache treatment? I have done both and there is a wealth of information that comes up. It is hard to accept pain especially if you do not know what is causing it! Depression is usually the sibling to chronic pain, but it does make it that much more difficult on you if you do not have a diagnoses, as that can cause anxiety to go with your depression and pain. May it might be a good idea to look for another treatment place, I would suggest looking at some of the bigger and more well know medical institutions. Mayo, Cleveland Clinic, or any university Medical school, as all those places also do medical research, and are more likely to be able to help you!!

Hang in there Suzane, you are not alone! We are all here for you!

White Beard

MsBunky
Veteran Member


Date Joined Jan 2010
Total Posts : 1097
   Posted 6/12/2010 9:01 PM (GMT -7)   
Suzane, have your doctors determined WHAT is causing your pain? Have they tried Botox for your headaches? I can't remember if you've said so or not, but it could be an option to try. Is there any type of surgery that can be done to cut the nerves that cause the pain? What about acupuncture?

I'm sorry you're having such a hard time managing the pain. It must feel like there is nothing left to try after all you've been thru...do you still see your doctors on a regular basis?

The best I can suggest to you is to get some meditation CDs that walk you thru relaxation with guided imagery. You are so stressed from being in so much pain right now, there's no way you can relax enough without help, to relieve some of the tension. Even though you say you have a problem with concentration, it would be worth trying again.

I wish there was a magical solution for telling you how to manage this. The fact is, there's no one right way....everybody is different. We've all be given the burden of chronic pain to manage, and somehow, we do...everyday when we wake up. For myself personally, I wake up each day knowing I can choose to be negative or positive, because either way, I'm going to be hurting. I'd rather be positive about it. There are others out there in a lot worse shape than me...I just put one foot in front of the other and do my best.

I think that might be a good way for you to try and approach it. Good luck...I really hope you're able to start getting some relief.

hugs,
Pam
Conditions: Fibromyalgia, Severe Myofascial Pain, Chronic Pelvic Pain (with permanent muscle damage), Femoralacetabular Impingement (CAM and Pincer), Reynauds, IBS, Surgical Adhesions, Ophthalmic Migraines, Severe Hot Flashes (both Surgical Menopause and medication related), plus physically unable to vomit due to the Nissen, and I have extremely tiny veins with a lot of scar tissue...a joy when it comes to having to give blood or get an IV started

Surgeries: Appendix, Uterus, Nissen Fundoplication for GERD, Left Ovary, Gallbladder, Right Ovary, TVT

Medications: Oxycontin, Cesamet, Tramacet, Cymbalta, Flexeril and Clonidine plus Laxaday, Vitamin D and a Multi-Vitamin daily


Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2284
   Posted 6/13/2010 11:41 AM (GMT -7)   
Suzanne,
They do a version of SCS for headaches (called a neurostimulator). It has been tested for migraines & is FDA approved. Depending on where your headaches are, SCS can even be helpful (I have occipital headaches -- at the base of my skull in the back of my head -- and the SCS is at C2).

But back to your original question, I think everyone learns to cope with it differently. For me, it meant focusing on what I still COULD do -- even though at times it was very little. And I read books about the philosophy of pain. For me, my faith has been really helpful in helping me come to terms with pain. I believe that God can use all these horrible things for good.

But others have found hope in different beliefs. A friend of mine is a disability advocate. She believes that her pain is God-given to allow her to help others who are struggling.

Still others I know subscribe to the Nietzschian philosophy that "that which does not kill us makes us stronger".

So I think the key is to look at what you currently believe about your life & pain & suffering you are going through. Then consider what others believe/teach about that. The key is to find something that will allow you to still have hope that your life can & does have meaning in spite of your limitations (because it does!). That's not an easy thing to do, but I can tell you that it has been worth the fight for me. Pain is so much easier to face when we believe that it's not ruining our lives & destroying our worth.

And the last thing that has been helpful has been surrounding myself with positive people. A wonderful wise woman I know has had a large inoperable brain tumor for about the last 20 years. She has been through a number of experimental treatments & has far outlived the time line her doctors gave her when she was first diagnosed. But she can't drive. Can't care for a lot of her needs. Had to give up her career & then had to give up even menial work outside the house. But she really changed my life & how I see things. She surrounds herself with friends almost every day. She makes the effort to invite people over to her home for tea (which she makes as often as she can, but sometimes her guests make it for her). And she is such a wise & wonderful woman that nobody minds the effort to visit with her. It ends up benefiting both her & her guests.
And that from a woman who suffers horrible headaches, speech problems, walking problems, and at times can barely even sit up in bed. But she's been a wonderful mentor to many young teachers & has been a constant source of emotional support to her husband & children. So I just want to encourage you that being bedridden & in horrible pain is not the end of anything. It is just one phase of your life. Sometimes you just have to take care of yourself, love those close to you & hang on until technology catches up. In the case of the lady I know, new treatment has now improved her speech & her gait is also slightly improved. She just keeps going.

When I was first dx'ed with Chiari, there really weren't any treatments. But after a while, the SCS became more effective & got approved, and now I can work and manage much better than before. I hope & pray that you can hold on and that a treatment that will work for you will come along soon.

peace & blessings,
frances

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 6/13/2010 6:18 PM (GMT -7)   
Dear Suzanne   I'm so sorry you're having to go thru so much pain.  My heart goes out to you.  Maybe you could ask your doctor about the stimulator.  It just might help you.  I hope you feel better really soon.  Take care.
 
love and hugs
Loretta
Dx:  ddd, spinal stenosis, bone spurs, hypothyroidism, typeII diabetes, asthma, allergies, high blood pressure, polycystic ovary syndrome, PTSD, depression, anxiety


tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 6/13/2010 6:33 PM (GMT -7)   
What kind of dr. do you see re the stimulator. If it's a neurosurgeon, my dr. sent a consult out two weeks ago and they returned saying they don't feel the need to see me because they can't help me.
What's with that? I need some help from someone!!!!
   
SUZANE
      
 Chronic, severe and continuous bilateral temporal headaches since April 2000.
 Poor prognosis, seen tons of doctors, been on dozens of meds and tried all forms of treatment with no success.
   May 2010 to present taking DM, dextromethorphan, 4x/day, to continue to reset the receptors, weaning off of oxycodone as it did not help with my pain, pain continues to be terrible every minute of every day!
  Feb to end of April 2010:3 cycles of IV Ketamine infusion via a PICC line and pump at home, this was to start resetting the receptors.
 Meds: oxycodone (weaning), cymbalta, vitamin D, B12, remedies from the homeopath
 Profession: Part time registered nurse on Long term disability and applying for permanent disability thru CPP which i was accepted
 52 yrs old, female, married, two boys 19 & 21, live in Ottawa, Ontario, Canada
 
           


Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2284
   Posted 6/13/2010 8:30 PM (GMT -7)   
Could be a neurosurgeon or a pain management specialist (typically only the anesthesiologist PM's do them, I've never heard of a neurologist or physiologist PM doing the procedure -- thought there might be an exception somewhere). Not all PM's do surgery, so you might have to hunt around for a bit. Not all NS's will do SCS implants so just because one group turned you down doesn't mean another one might not consider you for it.

The suggestion you got earlier to see a headache clinic might be a good one. I know some of the larger headache clinics in Chicago will do neurostimulators for people with chronic intractable headache. It should be one of the last resorts, but if you've already tried other options with no lasting relief, it might work. I know so far they are using them for occipital neuralgia & trigeminal neuralgia as well as chronic migraines.

I'm trying to remember, but you've already tried an occlusal splint, right? Or been told that it wouldn't work for you? If not, I'd find a dentist who does those & get an opinion from the dentist before considering anything so serious as surgically implanting a medical device in your head. :) But if you've already tried dental help (devices, filing teeth, behavior mod, etc.) and you've talked with an oral surgeon about tmj surgery & you've tried trigger point injections, and any other reasonable options to manage the pain, then the neurostimulator can be a very good option. It is surgery & does carry risk, but if all other options are exhausted it's worth a try (they do a trial first & if successful follow up with a permanent implant).

Sorry about the brush off from the NS's. I've been through that myself -- so frustrating. They wanted me to go through every possible option & basically be bedridden before they would see me. Eventually I ended up in the ER, unable to even get out of bed & then the NS finally came to see me & decided it was time to consider surgery. As it turned out, I opted against it but I well remember how miserable it was to just keep getting worse & worse and to wonder at what point would they finally consider taking my case. Hope things go better for you.

peace,
frances

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 6/13/2010 8:50 PM (GMT -7)   
Thanks for all the info. I have written it down and I am going to look into this. Not even sure if they do the neurostimulators here in Canada.

Wish me luck.
   
SUZANE
      
 Chronic, severe and continuous bilateral temporal headaches since April 2000.
 Poor prognosis, seen tons of doctors, been on dozens of meds and tried all forms of treatment with no success.
   May 2010 to present taking DM, dextromethorphan, 4x/day, to continue to reset the receptors, weaning off of oxycodone as it did not help with my pain, pain continues to be terrible every minute of every day!
  Feb to end of April 2010:3 cycles of IV Ketamine infusion via a PICC line and pump at home, this was to start resetting the receptors.
 Meds: oxycodone (weaning), cymbalta, vitamin D, B12, remedies from the homeopath
 Profession: Part time registered nurse on Long term disability and applying for permanent disability thru CPP which i was accepted
 52 yrs old, female, married, two boys 19 & 21, live in Ottawa, Ontario, Canada
 
           


tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 6/13/2010 9:12 PM (GMT -7)   
MsBunky said...
Suzane, have your doctors determined WHAT is causing your pain? Have they tried Botox for your headaches? I can't remember if you've said so or not, but it could be an option to try. Is there any type of surgery that can be done to cut the nerves that cause the pain? What about acupuncture?No one knows what the answer is , they all say poor prognosis. I tried botox twice with no effect, I have tried trigger point injections and all the nerve blocks, no one has mentioned any surgery. All mu tests are negative.

I'm sorry you're having such a hard time managing the pain. It must feel like there is nothing left to try after all you've been thru...do you still see your doctors on a regular basis?

The best I can suggest to you is to get some meditation CDs that walk you thru relaxation with guided imagery. You are so stressed from being in so much pain right now, there's no way you can relax enough without help, to relieve some of the tension. Even though you say you have a problem with concentration, it would be worth trying again.I do use tapes quite frequently, they  are so nice to listen too. 

I wish there was a magical solution for telling you how to manage this. The fact is, there's no one right way....everybody is different. We've all be given the burden of chronic pain to manage, and somehow, we do...everyday when we wake up. For myself personally, I wake up each day knowing I can choose to be negative or positive, because either way, I'm going to be hurting. I'd rather be positive about it. There are others out there in a lot worse shape than me...I just put one foot in front of the other and do my best. My problem is that I have so much pain that I have to lie down and pack my head in ice packs. So how can i do anything. If i stop the ice then the pain can increase while I am doing whatever. last I finished my flower garden , something that i absolutely love done and something that is so therapeutic for me. Well i got it done but i was crying, it was so hard to do. I have had a bad weekend in bed both days dark room. Well tomorrow is a different day. I'll try again .and i'll try to start off positvie
I think that might be a good way for you to try and approach it. Good luck...I really hope you're able to start getting some relief.

hugs,
Pam


   
SUZANE
      
 Chronic, severe and continuous bilateral temporal headaches since April 2000.
 Poor prognosis, seen tons of doctors, been on dozens of meds and tried all forms of treatment with no success.
   May 2010 to present taking DM, dextromethorphan, 4x/day, to continue to reset the receptors, weaning off of oxycodone as it did not help with my pain, pain continues to be terrible every minute of every day!
  Feb to end of April 2010:3 cycles of IV Ketamine infusion via a PICC line and pump at home, this was to start resetting the receptors.
 Meds: oxycodone (weaning), cymbalta, vitamin D, B12, remedies from the homeopath
 Profession: Part time registered nurse on Long term disability and applying for permanent disability thru CPP which i was accepted
 52 yrs old, female, married, two boys 19 & 21, live in Ottawa, Ontario, Canada
 
           


MajorOuch
New Member


Date Joined Jun 2010
Total Posts : 2
   Posted 6/13/2010 10:50 PM (GMT -7)   
MsBunky said...
Suzane, have your doctors determined WHAT is causing your pain? Have they tried Botox for your headaches? I can't remember if you've said so or not, but it could be an option to try. Is there any type of surgery that can be done to cut the nerves that cause the pain? What about acupuncture?

...

The best I can suggest to you is to get some meditation CDs that walk you thru relaxation with guided imagery. You are so stressed from being in so much pain right now, there's no way you can relax enough without help, to relieve some of the tension. Even though you say you have a problem with concentration, it would be worth trying again.



This post stood out to me. Botox... It definitely worked for me. I've had 4 injections with great results and it took away all the pain except for the area directly on the TMJ. It lasts 3 months.

I also had arthroscopy where they clean out your joint with saline solution. It didn't seem to do anything, but it changed the pain from accumulating while standing, to accumulating while laying down.

Nerve surgery... Yes, I heard that they can burn the nerves and inject nerve blocks. I'm trying to get doctors to do those things for me.

I had MRI's that show condyle degeneration and bone spurs.

I believe that relaxation tapes are actually helpful. Stress plays a huge factor in muscle pain. If you have muscle pain, then relaxation tapes and/or Botox would help a lot.

Acupuncture didn't help me. I'm curious if everyone who has TMJ here has also had some form of dental surgery (like getting wisdom teeth pulled) which may have caused their life destroying condition. I had my wisdom teeth pulled and my jaw was pried on the same side I now have permanent pain.

Unfortunately for me, I'm only 32, and I've been suffering with this for 8 years, since I was 24, and 6 years after I got my wisdom teeth pulled.

Because of my pried jaw and bent tooth, I clenched and grind my teeth until my jaw popped in 2002.

How do you cope with the pain? My answer to this question is that we cope by doing something about it. I had a doctor tell me once that I was obsessing about it and that I needed to get on with my life. Such a person doesn't understand the pain we go through. I am not an obsessive type person at all. I liken pain to hunger. If you're starving all the time I suppose you might appear to obsess about food. Well, I just want to be out of pain.

I've been on opiates for 1 1/2 years now and have always believed in *never* doing drugs. I won't do anti-depressants or most drugs. These things just civet up the pain and I want to find real help so I can be clear-headed and pain free.

Unfortunately, the medical system in my native USA is despicable. First off, I've paid tens of thousands of dollars to insurance companies so that their executives can be very stinking rich, while I don't even have my own hard-earned money helping me, let alone the insurance companies who refuse everything left and right. And at the doctors you never know how much you'll pay until months later when you get a bill, so you're afraid to even ask questions because they'll charge more, and when you do get the bill it's a $100 for each minute, such as $800 or $566 for absolutely nothing, and then they force you to pay and you have no choice because eventually you must give in.

So, I'm stuck with this for the rest of my life, even though the money I paid to the insurance companies would have been more than enough to help me pay for all these doctors visits. Last month I paid $900 in insurance and doctor costs for absolutely nothing, a referral to a different doctor.
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