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The psychological and emotional side of Chronic Pain

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Posted 4/29/2012 1:32 PM (GMT 0)

Hi,

  I have been suffering from chronic pain in my back for almost two years. As I'm sure many of you will have experienced, I spent a huge amount of time and money trying to get someone to take me seriously and to find a diagnosis for what was wrong with me. I have been to numerous doctors, physios, alternative health care professionals - you name it, I've been there! I have also been seeing a counsellor for about 18 months which has helped somewhat. Finally in December of last year I was lucky enough to be referred to an excellent pain management programme, where I learnt that chronic pain was the medical diagnosis for my pain.

The pain management programme was excellent and to finally understand what was wrong, how it was happening and to be able to have contact with other people like me was brilliant. I finally felt like I was getting somewhere. I spent four weeks on the course and was filled with hope that life could be managable, something that I had not felt in a very long time. I was given a great deal of exercises and activities to continue with once I completed the course, which I have pretty much stuck to religiously and have found very useful. I was also given a timer to time all my activities (e.g. only sitting for 20 mins at a time) which has really helped, although not being able to sit for more than 20 mins at a time can get pretty annoying at times! I won't sit here and make out like the pain has been magically cured, it hasn't. The exercises allow me to maintain a managable level of pain most of the time, but its still there. And I still have days of increased pain (I am currently in my 3rd day of a flare up, as they called it in the programme).

 The pain is horrible and it is hard, but at the moment I am finding the psychological side of chronic pain very hard to deal with. I don't know how I am supposed to accept that this will never be cured, that to a certain extent I will not be able to do all the things that I once would not have thought twice about. I am only in my early 20s, so this is the time when all my friends are out partying, or moving out or starting new relationships, progressing in their careers. Some are even having babies! I feel completely left behind. I spend most of my time doing exercises infront of the TV, watching TV or trying to cope with the fact that I feel like I have lost part of myself. I only now work part time, so I can't really make any career progress as I am just struggling to try to get back up to working full time. I can go out for dinner but clubs and bars that are busy are out of the question for now, which means much my social life and many of my friendships have gone.

I feel completely lost. I suppose that's the best way to describe it. The majority of my friends don't want to understand what is happening to me. I try and communicate with them, I have even given them copies of an excellent hand out provided my the pain management programme, however, for the most part I am told "That's really good, so you'll be back to normal before long then" or "Don't worry, just keep positive!". I can't say that if roles were reversed I wouldn't say something unhelpful like this, but I know that I would at least try to be understanding. At the moment it feels very much like this has been going on for a while and I should be better now. People who in the beginning were very good I think are now fed up with it. I didn't talk about very much in the first place,o only to people who were understanding but now I don't even feel I can talk to them.

I am sorry that this is a very rambling post. In someways, it's just good to get it out there, even if no one responds! However, if you are reading this, I would appreciate any advice on how you have dealt with the emotional and psychological side of chronic pain. I have no idea where I'm supposed to go from here and how I am supposed to live with chronic pain for the rest of my life surrounded by people who will never understand what it is like.

Thank you in advance for any support/advice you can offer.

Posted 4/29/2012 1:56 PM (GMT 0)
Hi Oliv...Welcome to the boards...although I am sad that you have pain and that's what brought you here...It's a wonderful place filled with empathy.

The weekends are a bit more quiet here, so don't get discouraged if there aren't as many quick responses.

As well as we have other members who are young like yourself that can help share what they have gone through.

I will come back later to share some more...but just wanted to say hello and say that we are glad you found us....
Posted 4/29/2012 3:40 PM (GMT 0)

      Hello Oliv28!

          We want to "Welcome" you to the Chronic pain Forum! wink

     I have some questions....but first I would like to invite you to read the "Chronic pain 101", located at the top of our home page. There are some very good tools there for you to use, (pain journal, pain scale) ...and lots of articles very worth reading! It never hurts to read the forum rules as well....so take a peek at them if you get a chance.

    One thing I think you will notice, is the warm and friendly members here. We really are a family of sorts, and totally understand living with Chronic Pain on a 24/7 basis. We encourage anyone to engage our members and seek support anytime day or night...and before long,... I'm sure you will make many friends here. Support is so important as we struggle with the physical and psychological challenges of this unwelcome condition.

    There are a few missing pieces of imformation that might help us understand more about you and excatly what type of treatment you are recieving. The first being, what test have been done to help diagnose your back pain? Have you had an MIR? Also, ...I do not see any mention of medications in your introduction. There are generally two types of PM's clinics....one that only does injections, and the other, ...offers both,.. injections, and pain management with pain med's. However,.. I am also seeing a third type of Pain Management Clinic more and more these days,...and they offer Cognitive type thearpy. I have a suspicion that this is the type of PM you are seeing currently. Is this correct? (I grasping at straws here with limited imformation) smilewinkgrin    

    I hope you can fill us in a little more...and at this point...I'm wondering if you are undermedicated if at all...and of course Depression goes hand in hand with Chronic Pain. I too!... will be back to offer more imformation on ways to deal with this issue that is so common with Chronic pain patients.

      Please keep checking in with us...and Enjoy the forum! As snowbunny said it can be a little slow on the weekends....but I'm sure you will get many more welcomes and responces on how to deal with your issues.

       Take care,

       SE wink       

Posted 4/29/2012 4:39 PM (GMT 0)
Hi Oliv and welcome to the chronic pain forum. I really do empathize with your situation and have seen it repeated here at the forum many times over. It just does not seem fair for the young people to miss out on so much life because of chronic pain. Coming here and getting things off your chest will help a tad I hope. Sometimes just being able to blurt it out and get it over with can make a person feel a bit better.

I am very curious about the pain program that you attended. Did you only attend this program for 4 weeks? Why was it only 4 weeks long and what type of dr ran the program? Sorry for so many questions just trying to get this in my mind. Do you have a dr that writes scripts for pain medications or muscles relaxers? Are you currently under the care of a pain mgt dr? If not, I would suggest that you get a referral to see one. Most of us here at the forum are under the care of a pain mgt dr and find it more helpful since treating pain is their specialty.

You asked about how you are suppose to accept your life as it is and learn to live a life at the same time. I will not kid with you, but acceptance is the key to the entire thing and it does not come easy. It took me a long time to come to terms with living with CP. In fact, I ended up under the care of a very good psychologist who was very helpful in getting me on the right track. I am still the same person but I have my limitations on what I can or cannot do. Making peace with this devil is hard. I learned that I still have a lot of living left to do, I do many things differently than I did before. Instead of thinking about the things I can no longer do, I concentrate on what I can do.. I usually start with small tasks, get one done before starting another one. It is real easy to set yourself up for disaster when trying to do too much and too many things at one time. Try to come up with ways to do things that will not set your pain into high gear. Above all remind yourself once in a while there is always someone else a lot worse off than you, that helps me keep things in perspective.

It is really hard trying to maintain friendships, especially when you keep turning down invites. I will caution you not to isolate yourself from people, it is very easy to do. Instead of the crowd scene keep it small, its a lot easier to manage and keep up with. Check around your community and see if there are any chronic pain groups that meet up once a month, sometimes hospitals will have this information. Try to find things to keep you busy and your mind off of pain. Find a hobby of some sort, or read a book, listen to music, anything to distract your mind.

I am a firm believer that the only people that can understand CP is someone that is afflicted with it. We look normal, we look just like anyone else, but you know sometimes I don't understand CP, so how can I expect someone else to. Most people mean well, they just don't get it and they can't. So, don't waste a lot of precious energy trying to make someone a believer.

It is a weekend and it tends to be slow around here on weekends but others will pop on and tell you hello and welcome aboard. Please keep us posted on how you are doing. Take care....Susie
Posted 4/29/2012 8:46 PM (GMT 0)
Thank you all for your kind words - it is really nice to hear from people who are in the same/similar situations.

As to the questions about medical stuff, I hope this will answer it!

I have had 2 MRIs, both showing dehydrated L4/5 and L5/S1 discs but have been told that 90% of people would have this, so it is not what is causing my pain. I have seen various doctors (ortho and neuro) and a pain managament specialist. All said the same, nothing wrong that they could see, time and rest would sort me out. It has been hard to be taken seriously because I had no accident or injury. I went to bed and I was fine and I woke up the next morning in excruciating pain and that's been it. It's kind of hard for people to take your pain seriously when they don't have expertise in it just occuring with no reason (interestingly on the PM course I was told that this is actually quite common).

Eventually I had 1 lot of facet joint injections with no help and was then lucky enough to be offered a second lot plus an epidural under the care of a different hospital, which did ease the pain somewhat. I have also been on various medication, including anti depressants during the past two years.

The PM programme I went on was an intensive 4 week in patient programme at the hospital, 8:30-5 everyday, 4 days a week under the care of doctors, nurses, psychologists, physios and occupational therapists. They used a lot of CBT and encouraged us to decrease our medication (I am currently not on anything and do feel a lot better for it, however, I have never been on high doses of anything, nor have I been on the majority of medications I know are prescribed to a lot of people with chronic pain). I learnt a great deal from this programme, particularly with the physical pain, I just felt that some of the psychological side wasn't as good for me personally, as a lot of stuff I had discussed in counselling, where as many people had not yet been down this route.

Straydog - thanks for your input on acceptance. I know ultimately that I am the only one who has the power to accept my situation but it is nice to hear that someone else has struggled with it (although obviously not nice for you that you have had to go through it). As part of my PM course I joined a PM organisation linked with the course and we receive newsletters with experiences of ex members of the PM course. This is great in theory, but a lot of what I have read have involved people saying things like it was hard to accept but now I have and my life is great and I am so happy about everything (not quite in those words, but that's the general message). If this is true, then that's great for them, but it doesn't offer people like me who are new to the concept of a life long condition to feel so good about it.

Thank you all for being so welcoming, just reading your posts have already made me feel slightly better :) I will have to check back and respond properly to some of the other points on here another time as it is bed time for me now!

Oliv
Posted 4/30/2012 3:39 AM (GMT 0)
Has any of your doctors ever suggest that you might have Fibromyalgia?
Maybe it's time you find another doctor, maybe either another pain management
or a Rheumatiod Arthitis Doctor...it,s also very important to keep at it til
you get that diagnosis that' ll fit what your going through.. And this is not
always easy, but you do deserve some answers... and yes long term illness, can
be hard on our bodies and very trying emotionally as you never ever expect
this to just continue, but counseling can help with this and with learning to
better live with this... I hope you can get a low pain day soon, many well wishes,
and keep us posted as we do care....Hope things get better for you...
Posted 4/30/2012 7:11 PM (GMT 0)
Oliv I read what you wrote about your MRI's and no wonder you have pain. The loss of fluid in the disc usually occurs in older people, mainly as part of the aging process. Depending on how much fluid has been lost in these disc can also contribute to your pain, the disc become hard when they have lost fluid and you end with degenerative disc disease. In other words what is showing on the MRI's would cause a person to have pain. I am assuming your drs explained all of this to you.

Many, many years ago we had a pain program very much like the one you participated in. This was an inpatient program and they had everything dr wise in this group. Their goal was no medications upon finish ing a 4 week program. They stayed in business about 4 years and ended up closing down because they ended up not having many patients. The patients were given a medication cocktail to drink three times a day while attending the program and as long as they received this medication they were able to do pretty much anything,.But without them they were not able to do much.

There are many different types of pain meds out there, its a matter of finding the right one that works. This is where a good pain mgt dr comes into play.

Keep us posted on how you are doing...Susie
Posted 5/2/2012 5:51 AM (GMT 0)
Hi Oliv
Your story sounded all too familiar as I read your plight and felt your need . It was reminding me of something close to my pain and how ironic that finally you say those words " facet joint disorder / disease / syndrome - depending how you are .

I have had 5 years of your world and as you will read about facet joint disorders many are told nothing is wrong .i was told nothing could be seen on MRI and it was normal maybe slight narrowing of the channels . The horrible part is being told it is psychosomatic " all in your head " making you think perhaps it is but you question why the chronic acute pain . Back and forth to the doctors / more pain medication it is emotionally and physically damaging isn't it ??

I read that a MRI is good to see both bone and tissue but not good at seeing facet disorders . The CT scan sees more bone detail and can be best for diagnosing . I also had a facet injection no pain relief and god the idea of having it every 3 months for two month relief -awful !!!! I have looked at a facet rhizotomy which apparently is similar process yet severs the nerves responsible for pain and the use of Botox to stop the muscle spasm ! This can give around a year or more relief ! Also I have ordered the BAXOLVE XP which is a lumbar support with a tens incorporated that supports the spine / massages and does not have hanging wires as the tens is incorporated in ( I used to have the issue with turns pads falling off .

What you will find with FACET is you cannot bend back but leaning or bending forward relives the pressure . Do you find this ?

Facet can be agony and I found out who were friends and luckily now I have a amazing who calls me his porcelain doll - pretty but very fragile aww . You need the regular support of a pain clinic to help with the pscholigical problems pain causes . I have massage therapy with essential oils and reiki which can help to relax the mind and body . I use a phone app for IPHone which is hypnosis for pain management . The BAXOLVE xp lumbar support and tens unit . And ofcourse the many many pain meds .

Keep talking / accept help and know your not alone !!
Posted 5/2/2012 11:33 AM (GMT 0)
Oliv28
First off, Welcome to the Chronic Pain Forum.

A postive attitude is a necessity to maintaining your sanity for sure. The majority of us with chronic pain are stressed daily when we cannot do what we used to. I am one of those people myself. I am in my mid 50's and have lived with Chronic pain for the last 10 years of my life. I had to retire early because of my pain but i'm not going to let it rule my life. It definitely wears on you psyhologically but you must never give up or you will find yourself in a place mentally you definitely do not want to be. I let myself go there for a while and it has been difficult to get back out of that hole at times. Many of us seek counselling to help cope and it does help to have someone to talk to. Which is one reason I enjoy this forum. We are able to make friends and talk with others that are in the same boat as ourselves. I've learned a lot from being on here and seeing how others deal with their daily life of chronic pain. I have found there are some extremely knowledgable people here who are more than willing to help you in any way they can.

Total acceptance that we will never be able to do the things we used to is definitely hard to achieve. I still haven't totally accepted that. One reason is, that I refuse to accept it. It is a challenge to me to be able to do a lot of the things I used too and I do my best to still do them. I just have to figure out how to do them differently now I am restricted. Again, Keeping a postive attitude will go a long way in achieving your goal.

When it comes to friends, True friends will always be there to support you and superficial friends will come and go in your life the same as they did before your chronic pain developed. Include your true friends in your endevors and you will build an even stronger relationship with them. Keep in mind your attitude will play a large role in how much they want to be around you. If you constantly are having a pity party when they are around it will wear on them also. I'm not trying to be mean by saying that but it is true. As far as being around people who will never understand, Don't underestimate them, They probably understand, love, and care about you more than you realize especially if it is your family you are talking about.

I keep coming back to having a positive attitude but it is an absolute necessity. The very same words you have been hearing from others. Dont look negative at them for saying that. They are just trying to help you to keep it positive. Sure it's hard but you can do so much more than you realize if you will seek and find that inner strength all of us have inside us. You just have to be willing to work for it and I'm not saying it will be easy cause it is a challenge.
Your still young and I know right now your thinking that you've been dealt a bad hand. That may be true but it is up to you and only you to make the best of it. No one else can do it for you. Just don't be afraid to ask for help along the way.

You coming here and asking us how we deal with things is a great start to getting your life back on track. Stick around and participate in the forum. There are a lot of great people here.

D
Posted 5/2/2012 11:37 AM (GMT 0)
Oliv you echo themes so many of us have found ourselves entangled upon, time and time again......these are the nature of the beast, this chronic pain roller coaster track we are rolling along -- or coming off the rails of, as the case may be......

Hang in there, know that you are far from alone, and that we are all in this together; by sharing our burdens and networking as best we can, the potential for transcendence arises.......
Posted 5/3/2012 5:46 AM (GMT 0)
I was born prematurely and had a bleed in my brain which caused me to have Cerebral Palsy, which for me means that physically, my body is screwed up in...well...a lot of ways...but for some reason my mentality was spared...and I'm smart. Which is a curse and a blessing in my situation.

I've been dealing with a muscle imbalance in my back, my hips dislocating from their sockets, tendonitis, as well as muscle spasms that occur pretty much everywhere in my body.

I'm 24 years old. I'm in a relationship, I go to college, and I very badly want a career. I'm doing my best to keep up with my "normal" life while physically I'm so far from "normal" its ridiculous.

The pain medication along with the other medications I take leave me with awful side effects, but as this time it's impossible for me to stop taking them because the combined pain from everything is just so horrible that without help I cannot keep "up" with my life. Even with the medications I have days where I can hardly stand, let alone dress, or shower, or walk.

The way I cope is by trying to maintain as much of a normal life as possible. For instance, no matter how sick or hurt I am, my dog still needs to be walked and fed, my schoolwork still needs to be done, my relationship needs to be nurtured...even if the things I do are not always physically demanding- because some days thats not possible...I try really hard not to let myself just....I dunno...lose myself.

Finding little things...a good book...watching a tv show you love...doing a puzzle. Any little thing can help.

Staying positive like people have been saying is helpful and beneficial but not always possible. So on those times when positive is too difficult, try to keep in mind that although the pain and problems etc may still be there tomorrow...tomorrow is a different day, and while you keep waking up, there is the potential for good things to happen to and for you. So you can despair sometimes if it helps to let it out but, remember this too shall pass.

Each and every person has struggles. Some not quite as obvious or painful but for whatever reason these are our lives and we can do little else but make the best of them!
Posted 5/3/2012 6:01 PM (GMT 0)
I have been dealing with chronic nerve pain in my upper stomach for 1 year now since a bout with ischemic colitis. Today I got a call from my sister saying she has Lymphoma. Gosh, my chronic pain seems minor next to what she is going through.

LexiRae in the previous post said "Each and every person has struggles. . . . and we can do little else but make the best of them!" Boy did her words hit me in the heart and head today!
Posted 5/3/2012 8:40 PM (GMT 0)
^ I'm sorry for the things you and your family are going through. I think everyone has a tendency to feel isolated in their condition(s), but if we stop and realize that everyone goes through something...maybe we'll stop feeling as though we're an island and work together to feel a little better about things. I think this is sorta what this site is all about. People coming together so that we can know we're not alone...even when we think we are.

I always try to reach out to someone when I feel like it the least...when I feel like there's noone who understands...because I know that's probably when I need it the most!
Posted 5/3/2012 9:06 PM (GMT 0)
LexiRae is correct when she said this site is about people having a place to go to and be able to talk to others afflicted with the same or similar health conditions. When Peter Waite first put Healing Well together that was his sole purpose. Peter suffers with crohns disease and he decided people needed a place to go so they could meet and discuss their health problems, be able to get support and help each other. I also have crohns disease and this is how I found Healing Well 8 years ago. That was when I diagnosed and I had no clue about it. I had an emergency resection surgery, I was extremely ill and had no idea what to do, this was back in 2002. My dr (PCP) said get online and find a safe reputable website. You can learn more there than any dr can possibly tell you and he was right. I don't know if many know about crohns disease or not, but you have things happen to you that you don't want to discuss with anyone, not even your dr. I learned so much from the crohns forum and was really in awe that the people were able to speak so freely about their disease and things your body does, lol. It was an eye opener for me. I can never give back enough to Healing Well for what it has done for me.

I hope everyone can get as much out of this forum as I have. It has been a real life saver for me over the years. We have so many other forums and always feel free to visit them, you do not have to limit yourself to one forum only. I go on several of the forums here and you will always be welcome to them. None of us that have been here for awhile knew how big Healing Well was going to grow as it has. All that is asked is to support each other, a kind word or telling someone hello can go a long way to a person that is feeling alone and isolated.
Posted 5/3/2012 10:16 PM (GMT 0)
This is honestly my first time coming to a place like this. I stumbled upon it, and I'm glad I decided to sign up. For me it's always been hard because it seems as though a lot of people who DO have Cerebral Palsy do not have it in the way that I do...either they are severely mentally compromised, and/or physically incapable of much, or they have it so slightly that they have almost no pain and no difficulty with normal functioning. So I always felt...out of place...talking to one kind or the other.

Here it seems like I've got comrades, even if its for unpleasant reasons, at least we can share in the misery.
Posted 5/4/2012 1:43 PM (GMT 0)
Straydog I have been coming to HealingWell for several years (in the IBS forum). But since I now have chronic nerve pain as well, I found my way here as well. Y'all are a wonderful bunch of supportive people. :-)
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