10 thoughts on “Chronic Pain Awareness Month

  • September 17, 2013 at 10:01 pm

    **What condition(s) do you have that have led you to living with chronic pain? How long have you been living with this condition(s)?

    Years ago, I slipped on a wet floor, landing on my knee, with my spine in an awkward position (knee hurt really badly, and parts of my leg started going numb). 5 years and 4 doctors later, I found out I had blown out my L4/L5 and L5/S1 discs. At this point, the L4/L5 had already caused some permanent nerve damage and the L5/S1 was pinching a nerve. Over the past few years, the numbness and burning in my leg steadily increased until I was in all out pain. After months of PT, I suddenly lost ALL feeling down there (yeah..those parts too), and the pain in my back was unbearable. Was rushed into surgery to relieve the pressure on the nerve and did regain feeling (in the important parts). I felt wonderful upon waking up, and even the first year post-op. But a year and a half out, I still have little feeling down my leg and foot, and almost constant painful/awkward muscle spasms in my lower back and leg. Can’t sit too long (and I work a desk 9+hrs/day and commute 3 hrs/day), can’t stand too long and, worst of all, can’t sleep comfortably. :o(

    **What do you want others to know about what it’s like to live with chronic pain? (i.e.- what is it that no one is saying about life with chronic pain? )

    It stinks. When you hear someone expressing the pain that they’re in, at least in my case, they’re often only telling you about 10-20%% of what it REALLY feels like (physically and emotionally). Also, in my situation, I was already dealing with a clinical depression issue (since childhood), and the chronic pain, lack of sleep, etc., has made it ten times worse. It’s been so bad that, on a number of occasions my therapist has begged me to promise I’d call 911 if I felt any worse in between visits (2x/week). I’m also very much aware that the depression is also contributing to the pain and vice-versa.

    **Which philosophy do you ascribe to: Keep hoping that the pain will get better or learn to adapt to life with chronic pain?

    In my case, I am doing a little bit of both. While I have had to adapt to limited sensation in one leg, and not being able to do certain things (not yet), I also have confidence that it will get better. I am optimistic that 90% of my pain can and will be resolved with some more treatment, stretching, yoga and some therapeutic massage. Finding the time and energy has been a bit tough (and living and working in two different states doesn’t help). As much as I want to just give up, pop a mouthful of painkillers and not be bothered, I keep telling myself it’ll get better; it has to get better. I’m only 38 and I am determined to get my life back.

    **What do you miss the most that you feel you gave up/lost as a result of chronic pain? What do you do now to fill that void?

    Feeling free to do whatever, whenever. I think I’m always going to be afraid of aggravating something in my back, thus I tend to limit my activities. I also just miss being generally functional and social. I have a decent social life but, because I’m so tired, I do turn down a number of plans and, at times, lie about having other plans so I can just stay home with some muscle relaxers and my cats.

    **What words of encouragement (or on the contrary what negative comments) have you heard from others that made you keep going despite the pain?

    My dear therapist likes to remind me that I have been through worse (years of debilitating cluster migraines) and this too will ease up in time. Also to try to stay positive and to keep up with the things that I enjoy doing (most of which are crafty things, so I can still do them relatively comfortably). I haven’t gotten too many negative comments. Most people in my life have been pretty supportive.

    **Do you feel that people view/treat you differently? How so?

    I often feel as if some people get a bit judgmental because they cannot see anything wrong with me, and give me the sideways “you’re just being lazy/anti-social” looks when I mention that I cannot join them in doing something. I have often found myself saying things like, “No, I can’t do [activity] with you because I can’t feel one of my feet/sit too long/stand too long!” I think what bothers me most is in these situations is that people feel like they’re entitled to an explanation. Being a relatively private and independent person, I do not take kindly to having to explain myself to anyone.*

    (*Except maybe explaining to my cats why I got home to feed them so late, but they’re cute and I love them.) :o)

    **What coping mechanisms have you tried that worked for you? Which ones did not work for you? (Traditional and Non-traditional)

    Acupuncture has been working out pretty well for temporarily relieving some of the stiffness and pain. TENS therapy has also provided temporary relief. I am starting to look into different methods of massage, such as Thai Yoga Massage, and popping the occasional painkiller or muscle relaxer helps when all else fails (although, because of my general need to be functional, the medication option is used very sparingly). Mostly, I find that the more I move, the better. Things get really bad when I stop.

    Otherwise, I try to keep my social calendar running at about half full, meaning I spent half of my weekends doing social things, to get out of my house and keep my mind off of stuff, and the other half resting alone at home with the aforementioned feline companions. I also try to escape in my crochet, reading and some DVD courses. A little retail therapy is always good as well. After all, carrying loaded shopping bags across a mall is really good exercise, right?

    One last thing is that, no matter how bad I feel, I like to try to remind myself how lucky I am because my situation could have been a much worse and, no matter how bad I feel, there are many people in this world who aren’t so lucky.

    Reply
  • September 18, 2013 at 3:24 am

    What condition(s) do you have that have led you to living with chronic pain? How long have you been living with this condition(s)? This year I was diagnosed with endometriosis, which causes severe pain in some and no piano in others. It also causes infertility. For me the pain is frequent (3-4 days out of 7) and often incapacitating. I lived with progressively worsening pain for about 15 years before finally finding out what was causing the problem and getting treatment that actually helped.

    What do you want others to know about what it’s like to live with chronic pain? (i.e.- what is it that no one is saying about life with chronic pain? ) The worst part of living with chronic pain –which has been mentioned but I think people forget, is that it is invisible an jot widely discussed. So basically anyone who has never experienced it cannot relate, and sometimes this “invisibility” is grounds for skepticism or suspicion, which can be very hurtful. It is much the same as with mental illnesses that are “invisible” like depression and anxiety.

    Which philosophy do you ascribe to: Keep hoping that the pain will get better or learn to adapt to life with chronic pain?
    I had a surgery earlier this year and am now taking medication that has made me much more functional despite still experiencing bouts of pain. My doctor’s approach was to try the least invasive and radical treatments first, and to only use more treatment as the pain becomes unbearable. I hope that this allows me to manage the situation for a while to avoid catastrophic surgery like a full hysterectomy since I am still in my mid-20’s and childless.

    What do you miss the most that you feel you gave up/lost as a result of chronic pain? What do you do now to fill that void? I avoid traveling far, and making plans too far off into the future, and often miss out on certain activities and social opportunities because of being in pain. Before having surgery I was missing 3-4 days a month from work due to the pain. The nature of my ailment makes romantic attachments almost impossible, and infertility is a very real concern. I was told by my doctor as a single 24 year old that 3 to 5 years was the MOST I could hope to keep my reproductive organs so the prospect of never having kids weighs on my thoughts. I am also nervous of becoming addicted to painkillers so I use them sparingly, which is hard when trying to work or remain focused on important things for school or work. I am not one to complain to others really, so it’s easier to just say I am feeling under the weather or to make up some other excuse. Only those very close to me know the real cause of my pulling back.

    What words of encouragement (or on the contrary what negative comments) have you heard from others that made you keep going despite the pain?
    Do you feel that people view/treat you differently? How so?
    I have been called a hypochondriac by some family members who felt surgery was unnecessary or been told I was “playing the victim” when declining certain activities or asking for consideration due to my pain. Thankfully my workplace is accommodating, so these comments have only been limited to family members. My friends have been very supportive which is a great encouragement since I know they have seen me struggle with pain for years, not knowing why, but also have been kind and understanding since my diagnosis.

    What coping mechanisms have you tried that worked for you? Which ones did not work for you? (Traditional and Non-traditional)
    I have used just about every painkiller (both prescription and over the counter) available. Most don’t work, and the stronger ones are very temporary and only dull the pain. I have found yoga to be helpful mentally in both dealing with the pain and subsequent depression and isolation that go along with it. At this point I am more likely to use a home or alternative remedy — mediation and relaxation, a hot bath, rest– for immediate management and to work with my doctor about long-term options. As for encouragement, I keep the thought in mind that likely in the next 5-10 years I will need to undergo a hysterectomy and will be done with the debilitating pain and free to lead a normal life again!

    Reply
  • September 18, 2013 at 11:17 am

    1.What condition(s) do you have that have led you to living with chronic pain? I have Rheumatoid Arthritis, Degenerative Disc Disease, osteoarthritis.
    How long have you been living with this condition? 8 years
    2.What do you want others to know about what it’s like to live with chronic pain? (i.e.- what is it that no one is saying about life with chronic pain?) There are just a few outward signs showing that I have arthritis so people think I’m faking it when I say I’m so tired and so in pain. They tell me I look fine and I need to just get out and exercise. I also have Myasthenia Gravis which makes it extra difficult to exercise.
    3.Which philosophy do you ascribe to: Keep hoping that the pain will get better or learn to adapt to life with chronic pain? I’m trying to learn to adapt.
    4.What do you miss the most that you feel you gave up/lost as a result of chronic pain? I don’t have much energy anymore. I can’t walk much or exert myself where I get overheated.What do you do now to fill that void? I read and crochet, etc. but it doesn’t feel good to just sit all the time. I stand most of the day at work and by the time I get home the pain is bad and I’m exhausted.
    5.What words of encouragement (or on the contrary what negative comments) have you heard from others that made you keep going despite the pain? You don’t look sick so you can’t be that bad.
    6.Do you feel that people view/treat you differently? Sometimes. How so? They avoid me or talk about how much fun they had doing such and such, believing that will make me “get over myself”.
    7.What coping mechanisms have you tried that worked for you? Rest, some pain killers.
    Which ones did not work for you? Pushing myself too hard so others don’t get upset with me.(Traditional and Non-traditional)

    Reply
  • September 18, 2013 at 12:45 pm

    What condition(s) do you have that have led you to living with chronic pain? How long have you been living with this condition(s)?

    Chronic lower back pain
    Scleroderma
    Sjogren’s
    Raynaud’s
    Chronic Migraines
    Fibromyalgia

    At least 12 years

    What do you want others to know about what it’s like to live with chronic pain? (i.e.- what is it that no one is saying about life with chronic pain? )

    If you don’t always look sick they think you’re not. When someone see’s me out and about they assume I have no pain when in fact I have not lived without pain for over a decade. I might need to use my cane sometimes and that just means I am in more pain it doesn’t mean that when I don’t I have no pain. If they see me in my yard one day they assume I’m not in pain while on the days they do not they still think I’m pain free because they saw me out. Sorry to disappoint you but you do not live in my body you do not feel my pain. If I just stayed in bed day after day because of the chronic pain I would be in bed 24/7. People just don’t get it because when they are sick they suffer a day a few weeks or even months but they get better I do not.

    Which philosophy do you ascribe to: Keep hoping that the pain will get better or learn to adapt to life with chronic pain?

    I had high hopes that I would get better but that didn’t happen it just got worse so bad I no longer work or enjoy the activities I loved to experience. At first I planned my death but for some twisted reason I go on day after day living in this miserable body full of pain and I’m not sure why because it prevents me from having a life I want. Sleep is the only break I get when I’m unconscious I don’t feel it. I am trying alternative ways to help me cope to lessen the pain.

    What do you miss the most that you feel you gave up/lost as a result of chronic pain? What do you do now to fill that void?

    I miss the physical me. I was very active always go go go. I’ve lost the majority of my friends because I had to decline get togethers and outings with them. They don’t understand so they stopped calling stopped visiting me all of them expected me to get better. I no longer have voids because my daily routine is more than I can handle. Things that were easy for me have become so hard to do. I research my conditions and have become very political but that too can be tough because reading or being in front of a PC screen can be harsh on my eyes and migraines, I have many limits.

    What words of encouragement (or on the contrary what negative comments) have you heard from others that made you keep going despite the pain?

    I hear friends saying oh you’ll get better they’ll find a cure etc but it all sounds like ignorance on their part. I know at my age there really is nothing new at this point especially when the pharmaceutical companies don’t want cures they want life long treatments to make profits.

    Do you feel that people view/treat you differently? How so?

    Of course they do! They avoid me I don’t look the same so I’m not attractive to them anymore. It opened my eyes to how shallow they are. It hurts me to talk with someone who knew me as a healthy person but now they can’t even look me in the eyes.

    What coping mechanisms have you tried that worked for you? Which ones did not work for you? (Traditional and Non-traditional)

    I tried everything meditation, talk therapy, support groups, medications, alternative medications, stopped eating processed foods, put a chair in my kitchen, bought a softer mattress added many more pillows, bought extra canes to have in my car and home. I listen to my body more instead of trying to push myself which causes even more pain I take breaks or I go right back to bed. It bothered me a lot that I was stagnant not getting things done not being able to hang out with friends and enjoy my past activities not being able to work and losing my independence. But I can’t control that my disease’s do. It is what it is so I take it day by day I no longer look into the future nor do I have false hopes. I live in reality and have learned to see the signs of depression trying to seduce me into doing nothing and giving up completely even though I no longer have a purpose in life. I’m breathing my heart is pumping but I’m not ‘living’ I’m just surviving. I try not to talk about my health problems to those who do not have health issues its like beating a dead horse there is no point and they will never understand so why bother. I spend more time alone but its actually better for me physically and mentally because I can sit or lie down when I need to and not have to keep up with them and suffer more.

    Reply
  • September 19, 2013 at 5:29 pm

    What condition(s) do you have that have led you to living with chronic pain?

    As yet, the doctors aren’t really sure. It began with an ankle sprain about half a year ago which developed into tarsal tunnel… and then my other ankle and both wrists began hurting. It might be tendonitis or fibromyalgia… but still no clear diagnosis.

    How long have you been living with this condition(s)?

    I’ve been dealing with my ankle injuries for six months and my wrist pain for about two months.

    What do you want others to know about what it’s like to live with chronic pain? (i.e.- what is it that no one is saying about life with chronic pain? )

    There is a clear difference between how people treat others with visible injuries and with invisible ones. Living with chronic pain that isn’t telegraphed makes me feel like a fraud– either I have to keep bringing it up to justify why I’m walking so slowly, why I need help carrying heavy things… or I just stay quiet and try to push through it.

    Which philosophy do you ascribe to: Keep hoping that the pain will get better or learn to adapt to life with chronic pain?

    For a while, I was trying to switch medicines a lot, hoping something would miraculously fix whatever was wrong. Now I just tell myself to walk like it doesn’t hurt. Any time I can bike instead of walking helps, because it puts less pressure on my ankles. I try and distract myself by doing a lot of fun things… and when it’s mild chronic pain instead of constant, stabbing pain, it’s a good day in my book.

    What do you miss the most that you feel you gave up/lost as a result of chronic pain? What do you do now to fill that void?

    I miss being able to dance and do martial arts. I’m trying to take it easy to see if I’ll heal on my own. I try and spend more time with friends and sing more often, since I can’t move as much as I’m used to.

    What words of encouragement (or on the contrary what negative comments) have you heard from others that made you keep going despite the pain?

    I wouldn’t say there were any clear statements that made me keep going… I just had a conversation with my mom the day of a really disappointing doctor’s visit (I had to get injections that were very painful and pretty much had a breakdown because I was tired of dealing with it for so long). Mom told me about when she had been in chronic pain for most of the year and she just said she understood how it felt to have to keep going. That made me feel better.

    Do you feel that people view/treat you differently? How so?

    I definitely feel that people treated me differently when I was visibly disabled (in a walking boot, wearing wrist guards) than they do now. I try to act like I’m completely well, so even if I do start experiencing more pain and have to ask people to walk more slowly or take the elevator instead of the stairs, they normally don’t know or ask if I’m in pain.

    What coping mechanisms have you tried that worked for you? Which ones did not work for you? (Traditional and Non-traditional)

    I normally try to distract myself if it’s a bad day…. Normally I can’t type for too long (so this right now is causing me some discomfort), but I read or watch Netflix and drink tea or hot cocoa… Wrap myself in blankets while I’m icing my ankles…. anything to feel comfortable despite the ways my body is complaining.

    Reply
    • September 24, 2013 at 7:44 pm

      If you haven’t yet, go to a pain management center. Pain is affecting you too much not to.

      Reply
  • September 24, 2013 at 8:01 pm

    1. What condition(s) do you have that have led you to living with chronic pain? How long have you been living with this condition(s)?

    Spastic cerebral palsy. More than 4 years. Have had cp since birth but my spasticity (muscles that are too tight) was mild and painless prior to a car accident on July 11, 2009. Spasticity increased dramatically after the accident, My mom was in the accident too. We both got whiplash and went to pt but I never got better, I developed chronic pain. I was 25 then, I am 29 now. Pain and spasticity make each other worse, it is a vicious cycle. It is tight muscles, muscle spasms, constant burning pain, especially in my back and constant 24/7 headache.

    2. What do you want others to know about what it’s like to live with chronic pain? (i.e.- what is it that no one is saying about life with chronic pain? )

    It’s exhausting. I’m not trying to be anti-social but I cannot tolerate the noise or light. My pain is as bad as I say it is, and this applies to all pain patients.

    3. Which philosophy do you ascribe to: Keep hoping that the pain will get better or learn to adapt to life with chronic pain?

    Both. Mostly Adapt, but it took a long time to get there. I was in denial for a long time. Except I hope to find something for my back pain.

    4. What do you miss the most that you feel you gave up/lost as a result of chronic pain? What do you do now to fill that void?

    Sense of accomplishment that my job gave me. Nothing currently. I have to treat my depression first because I have a hard time staying awake long enough to work.

    5. What words of encouragement (or on the contrary what negative comments) have you heard from others that made you keep going despite the pain?

    I love you.

    6. Do you feel that people view/treat you differently? How so?

    They understand I have to leave social events early because noise & light makes my headache worse.

    7. What coping mechanisms have you tried that worked for you? Which ones did not work for you? (Traditional and Non-traditional)

    What helps:
    Most important meds are trigger point injections (uses bupivacaine, a local anesthetic), Tramadol and my intrathecal baclofen pump. It is a drug pump that delivers a muscle relaxant to my spinal column. Much more effective than pills. However, it only works for the waist down. Still have a high level of pain above the waist.

    Ice immediately after injections, hot shower, acupuncture, aqua therapy (pt in pool), do not have the means to commit suicide, pain psychologist (recommended by a psychologist living in my neighborhood), thermacare wraps (OTC heat patches you wear for 8 hours), a great doctor at great hospital (much better than my old doctors-it makes a difference what hospital you go to)

    Did Not Help: Massage was a disaster, orthopedic pt, neurologic pt, therapeutic horseback riding, family support, therapist recommended by family dr.

    An ultrasound machine like they have in physical therapy with a deep heat setting would help a LOT but you can only buy one with a professional license. Has anyone had laser therapy? Does it work?

    I am Interested to know who else has a high level of pain despite treatment. ?

    Interested to know who else besides me has a pain level high enough that their nervous system is hyper-stimulated, which results in light & noise being painful. ? Anybody?

    Reply
    • September 24, 2013 at 8:02 pm

      Correction- family support does help

      Reply
  • September 28, 2013 at 12:23 pm

    1.What condition(s) do you have that have led you to living with chronic pain? How long have you been living with this condition?
    I have arthritis in my lower neck from an injury when I was young, and I fractured my pelvis several years ago and that has created a bunch of problems in my legs and lower back. I have had varying amounts of pain for most of my life, but the worst began about 5 years ago.
    2.What do you want others to know about what it’s like to live with chronic pain? (i.e.- what is it that no one is saying about life with chronic pain?)
    I find that I am often tired, and the soreness makes moving about and doing daily tasks more difficult. I can’t be active for as long as I used to.
    3.Which philosophy do you ascribe to: Keep hoping that the pain will get better or learn to adapt to life with chronic pain?
    I do both actually, I try to do what I can but I also have come to terms with it.
    4.What do you miss the most that you feel you gave up/lost as a result of chronic pain?
    I wish that I could be more active, sit comfortably, and get to sleep without having to lie still in pain for a while first.
    5.What words of encouragement (or on the contrary what negative comments) have you heard from others that made you keep going despite the pain?
    Some people understand and some don’t, but mostly I can get help if I need it. The only difference is with doctors. I don’t have insurance so doctors are more likely to shrug me off and I have yet to receive any actual help.
    6.Do you feel that people view/treat you differently?
    I think my friends are more aware of my limits now.
    7.What coping mechanisms have you tried that worked for you? Rest, some pain killers.
    Which ones did not work for you?
    Stretch and exercise definitely helps. It is appealing to rest a lot when you are in pain, and while some rest is good, too much will only make it worse. I also take pain killers that are aimed at reducing inflammation, like naproxin sodium or other nsaids but you gotta be very careful when you take those. Sleep aids can be helpful on bad nights when the pain keeps me awake.

    Reply
  • September 28, 2013 at 8:52 pm

    What condition(s) do you have that have led you to living with chronic pain? How long have you been living with this condition(s)?

    I have been diagnosed with Fibromyalgia and Chronic Fatigue. I have had this condition for the past 5 years.

    What do you want others to know about what it’s like to live with chronic pain? (i.e.- what is it that no one is saying about life with chronic pain? )

    Learning to live life with chronic pain is painful, frustrating, emotional and tiring. No one really understands what you are feeling because you look fine. People go around telling you that it is all in your head. That you are just being lazy and that you need to try harder. It is a process but once you accept your condition and learn your limits you can live a normal life but with limitations. I was always a person who put others before me. I had to learn to become selfish with my time. It is all about me and my limitations now. I do miss my active life style. I was a Type A personality and constantly on the go. You have to learn to let the small things go and learn that things will get done when they do. This condition has many side effects that are painful to live with and there is never a time limit on them. They happen when they happen and you have to learn to deal with it. Constant headaches, migraines, stiffness of the joints, your body is in pain from head to toe. This condition I feel is an emotional condition. It brings on anxiety and depression.

    Which philosophy do you ascribe to: Keep hoping that the pain will get better or learn to adapt to life with chronic pain?

    I have learned that with this condition you have to adapt to life with chronic pain. You have to find ways to alleviate the pain and accept your limitations and change your life to live with them.

    What do you miss the most that you feel you gave up/lost as a result of chronic pain? What do you do now to fill that void?

    After learning to live with this condition and what it was about, I miss the me that was constantly active. I was a jogger, I can no longer take that on. I carried a million and one projects at one time. Work, school, active life with family and friends. I now have accepted to have a routine. I go to bed at the same time in order to be rested and be able to handle a full 8hrs day. I have learned to let go of the small things like cleaning house, stressing about timeframes and I don’t take on more than my body will allow me to commit. I also had to learn to let go of people who did not accept my condition. I had to learn to be selfish about me and what I need first now. People who come into my life now have to fit my schedule and not the other way around. I also was a very reserved person that did not let others see my emotions. I had to learn to let go and cry now when I am in pain. This was hard for me to do but in order to relieve the chest pain I sometimes experience I had to learn to be open about crying. Touching me also hurts but when I get hugs my body feels relief. It is sad but I joke around and say that my body is depressed and needs a hug. Now when family and close friends see me, they gently hug me and hold me close. I had to adjust to this. I was never an emotional, touching person.

    What words of encouragement (or on the contrary what negative comments) have you heard from others that made you keep going despite the pain?

    Negative comments that I have heard are that this condition is all in my head. That there is nothing wrong me with me because I look fine. I have been told not to be lazy. That I am a party pooper because I am always tired.

    Do you feel that people view/treat you differently? How so?

    Yes, people do treat me different. I no longer get invited to late events or anything that requires long distance travel or active events.

    What coping mechanisms have you tried that worked for you? Which ones did not work for you? (Traditional and Non-traditional)
    When I was first diagnosed with this condition I was partial bed ridden. All I did was sleep. I was so tired and in pain. Sleeping was the only thing that alleviated that. I felt like I was in a nightmare. My son was 6 yrs old at the time. I am a single parent and it hurt me to see that I couldn’t take my son to the park or outside a lot. Thank God for my family who stepped in to help. But he would say that mommy was always tired. The doctor prescribed Lyrica with Cymbalta for the pain. It did alleviate the pain but I ballooned in weight overnight and the meds were making me depressed. I would find myself having crying jags for no reason. I got fed up with the meds side effects and I realized that I am a fighter so one day I just decided that I was going to handle this. I got off the meds and took control of my life. Even though I experienced pain I worked through it. I researched my condition and tried different things until I created my routine to survive. I got rid of negative things and people who did not understand out of my life. I have a sleeping routine, go to bed at the same time. I eat healthy, walk, I take sleeping meds to help with the sleep. I have learned to listen to my body and stop when it’s tired. I don’t overdo or overwhelm myself. Having massages also help with the pain. I also keep positive. I have faith in prayer, family who is hear to help and just lend an ear.

    Reply
 

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