Living with chronic pain?

[HollyDay]

This is relatively new for me.  As in within the last year.  It takes a lot of self care and management to keep pain levels from wrecking my normal activities of daily living.  But, sometimes that just doesn't work. 

 

Anyone have any helpful ideas?  I'd love to hear from women who have BTDT

[trulycrabby]

My sister has chronic pain due to severe arthritis. Basically, her joints are disintegrating. My advice is to get the very best pain doctor possible and foster a good working relationship.

 

If you are taking narcotic pain meds, have a system in place so that you will not run out of medication and go into withdrawal.

 

Each person with chronic pain is so different. If you are able, do as much physical exercise as possible. If there is a pool available, then use it as much as possible.

 

That's all I've got unless you want to get into the minutia of types of pain management.

 

:grouphug:

[Katy]

Use narcotics as a last resort.  You will not only develop a physical dependency on them, but you'll develop a tolerance and then there is nothing left to treat the pain.  Take narcotics when you're suicidal and need a psychological break from the pain, but not for long term daily use. 

 

Pain tolerance does increase greatly, but it takes weeks or months.  Be patient. 

 

Try foods and supplements that lower inflammation.  Cinnamon, Ginger, Turmeric, Cherries, and fish oil all come in supplement forms, are cheap at Walmart, and make a huge difference in pain levels.  Depending on the physical condition, other supplements might help too.

 

Focus on the good.

 

Prioritize daily activities and delegate whatever you can that doesn't make you feel good.  When I was in the worst pain, I liked to cook anyway.  Some days it was a pasta that took less than 10 minutes of effort, but I felt like I was doing something, which made me happier.

 

Read books from people who have gone through similar experiences.  My favorites were 90 Minutes in Heaven (only the first part is about heaven, the rest of it was about the difficulty of learning to live with chronic pain and needing so much help); and It's Not About the Bike (Lance Armstrong, before the cheating was common knowledge. The parts about dealing with pain really resonated with me).

 

Do something that makes you happy every day if possible.  This can be something simple - I usually did crafts or painted in Acrylic.

 

Watch something everyday that makes you laugh.  Reruns or Netflix favorite comedy shows.  Laughter increases pain tolerance and decreases depression.

 

Try to get 8 hours of sleep every day.  It really helps.

 

If possible, go for a short walk or otherwise get some exercise every day. Even if you get rebound pain after the exercise, walking, preferably outside, also decreases depression and is more effective than antidepressants.

 

Don't be afraid to go on antidepressants.  Being in chronic severe pain is enough to give anyone situational depression. When I ran out of treatment options, I was really depressed. Extended release generic Wellbutrin is on the $4 drug list at Walmart (or at least it was when I needed it), and made a huge difference in my attitude in less than a week.

 

If you can afford it, have your vitamin D levels and thyroid levels tested.  Borderline low levels for either of them can greatly decrease pain tolerance, and make things that would otherwise be tolerable disabling.  Similarly, if you're not spending time in the sun or eating enough iodine, both might be artificially low.  Iodine supplements took my thyroid numbers from low to perfect, and greatly reduced my pain.  You must know though, that iodine supplements can make thyroid conditions worse if they are caused by autoimmune issues rather than by not consuming enough iodine.

[Jean in Newcastle]

I've had chronic pain for 30 years. 

 

If at all possible, look for what is causing the pain.  It could be chronic hidden infections, vitamin deficiencies, allergies/intolerances, as well as other things.  My fibro is due to an overactive central nervous system - or at least that is the latest theory.

 

Distractions work better for me than narcotics.  (Narcotics have never touched my pain, and they make it hard to function.)

 

Physical therapy helped me a LOT.  Dh has learned how to do physical therapy on me and we do certain stretches for about 15 minutes ever single night.  This has made a huge difference in my pain levels and mobility.

 

I'm on an experimental medicaltion (low dose naltrexone) that finally after 3 months seems to be actually helping.  It helps to regulate your immune system.

 

I delegate when I can, plan for what I can and have let a lot go.  (You would understand this if you saw my house!)

[The Girls' Mom]

My husband has lived with chronic pain since 2008.  It can be such a struggle.

 

Things that help him:  Resting often.  Taking his meds like he is supposed to (this seems like a no brainer, but he often decides he should wean off for a while and "deal".  It never ends well).  Getting outside a little each day if you can.  Being active when you can, but not over doing it.  Hot epsom salt baths.  Reducing stress.  Realizing when you have to slow down and rest.  

Things that hurt him:  Eating poorly.  Doing too much (especially in the heat).  Not getting enough sleep.  Stress.  

[HollyDay]

Thanks so much.  Knowing I'm not alone is a huge help.  I have refused narcotics completely.  Not even on the table for discussion.  I do have prescription NSAIDs but they discourage too much use since this is lifelong and NSAIDs will cause some problems with longtime use.  One doc recommended steroid shots but another discouraged that in case I need surgery down the road.  Physical Therapy has helped but there isn't anything else they can do now. 

 

I'm trying to sort out what life will look like moving forward.  There is no fix.  This will be here and will only get worse with time.  Best I can hope for is not an increase, or at least minimum flares. I appreciate every comment.  Thank you all

[Lizzie in Ma]

I've had chronic pain for 30 years. 

 

If at all possible, look for what is causing the pain.  It could be chronic hidden infections, vitamin deficiencies, allergies/intolerances, as well as other things.  My fibro is due to an overactive central nervous system - or at least that is the latest theory.

 

Distractions work better for me than narcotics.  (Narcotics have never touched my pain, and they make it hard to function.)

 

Physical therapy helped me a LOT.  Dh has learned how to do physical therapy on me and we do certain stretches for about 15 minutes ever single night.  This has made a huge difference in my pain levels and mobility.

 

I'm on an experimental medicaltion (low dose naltrexone) that finally after 3 months seems to be actually helping.  It helps to regulate your immune system.

 

I delegate when I can, plan for what I can and have let a lot go.  (You would understand this if you saw my house!)

 

Agree with Jean, physical therapy can be extremely helpful, especially pool therapy and myofacial massage.  Both my kids live with chronic pain, they vastly prefer distraction to narcotics, although occasionally, a nighttime muscle relaxant helps them to get a good night's sleep.  One kid is a crafter, the other a gamer, whatever works for you.  Monthly chiropractor visits help some too.

LDN can be life changing in many ways but it doesn't help my kids pain. Oldest has been on it about 2 years now. Good information here.  http://www.lowdosenaltrexone.org/

[G5052]

This is relatively new for me.  As in within the last year.  It takes a lot of self care and management to keep pain levels from wrecking my normal activities of daily living.  But, sometimes that just doesn't work. 

 

Anyone have any helpful ideas?  I'd love to hear from women who have BTDT

 

Find a pain specialist who can recommend a variety of approaches. Typically it's not just one thing that helps all the time. You need a variety of options.

 

Take narcotics when you're suicidal and need a psychological break from the pain, but not for long term daily use. 

 

I disagree with this. This needs to be worked out with a pain specialist who has looked at all of the possibilities. 

 

Some people truly need narcotics in a very controlled way under the supervision of a doctor. There's no shame in that if everything else doesn't work and your life is going to completely unravel without them. There are people who can't work unless they are on that type of medication. Not great, but Social Security Disability doesn't pay very many bills. No one should have to do that, but some do.

 

And you should never, ever let it get so bad that you're "at the brink." Pain is hard to turn back once it's very high, so the goal is to manage it on an ongoing basis. It can be hard, but if you are losing it every day, taking narcotics if nothing else works might be a blessing.

 

If narcotics don't work and everything else has been tried, there are spinal stimulators and medication pumps. 

 

Don't give up. It sounds like you need professionals helping you consider the options.

[Katy]

G5052 - you might be right about some causes of chronic pain, but others, where the pain is intermittent and has flares, narcotics are a very bad idea and only taking them when it is that bad is better.  It's going to depend on the cause.

Edited August 19, 2016 by Katy

[G5052]

G5052 - you might be right about some causes of chronic pain, but others, where the pain is intermittent and has flares, narcotics are a very bad idea and only taking them when it is that bad is better.  It's going to depend on the cause.

 

I agree. Work with a pain specialist. If you're constantly unravelling with no other options, you and your doctor need to decide what to do. Totally different than a flare here and there.

[Peaceful Isle]

Try to find something to help you with your pain :(

I have lived with chronic pain for 5 plus years. I finally found a prescription that works with my body. I was under the mind set at first that I would never take anything permanently. Well, after almost losing my mind to pain, I decided I would try to get it under control. Chronic pain can really mess with your emotions.

Try to take car of yourself, eat well, take a good vitamin, and try to find something that will work for your pain.

[Jean in Newcastle]

Agree with Jean, physical therapy can be extremely helpful, especially pool therapy and myofacial massage.  Both my kids live with chronic pain, they vastly prefer distraction to narcotics, although occasionally, a nighttime muscle relaxant helps them to get a good night's sleep.  One kid is a crafter, the other a gamer, whatever works for you.  Monthly chiropractor visits help some too.

LDN can be life changing in many ways but it doesn't help my kids pain. Oldest has been on it about 2 years now. Good information here.  http://www.lowdosenaltrexone.org/

 

Yeah - the ldn hasn't taken away all the pain and I still have flares (when it escalates) but in ways that I can't quite quantify yet, it has helped.  I think that it has helped me to be healthier and to have more stamina because of it.  But I'm still fairly early in my trial of the medicine. 

 

My chiropractor keeps me upright.  I go weekly.  I have a concierge type agreement with him (that he offers to some patients) where I pay a monthly fee but can go as often as I need to.  I think that I would be curled up in the fetal position if I didn't have my chiropractor! 

 

Re. distraction.  One thing that has helped me in the really bad times is to pin chronic illness memes and jokes on Pinterest!  It's more than just "misery loves company", though it does help to see that others "get" what I'm going through.  Not so coincidentally, it was while doing this on Pinterest that I first came across mentions of low dose naltrexone, so when my doctor mentioned it, I already knew something about it. 

 

[AngieW in Texas]

My 18yo has been in constant pain for the past 2 years and it is her new normal. Starting at 11yo, she had acute pain. It became chronic and never-ending 2 years ago.

 

Physical therapy helped. It didn't make it go away, but it did reduce the pain levels and restore some functionality.

Massage therapy helped also. She goes to the massage therapist recommended by her physical therapist. We are hoping that she finds a massage therapist in NY that helps just as much.

To stay functional, she has to get a massage every 2 weeks.

 

For her condition, pilates is recommended to help strengthen the muscles to hold the bones in place better. She is currently going to a private pilates teacher. Once she goes away to school in another week, she will start group classes.

 

My dd has been on an insomnia medication for 6 years. She would not be able to sleep without the medication and it took two torturous years before a doctor was willing to prescribe medication. She is still on the same dose she took when she was 12yo. Getting good sleep also helps to keep the pain at more tolerable levels.

[Penguin]

:grouphug:  :grouphug:

My pain is not too bad on the scale, but it is chronic. I got some good advice on this thread:

 

http://forums.welltrainedmind.com/topic/564158-managing-chronic-pain-wo-medication-any-success-stories-tips/

 

Maybe you will find something helpful in there.