Other Living with chronic pain

[shrinkingviolet]

Hello there. I live with chronic pain due to migraines. They started about 3 years ago, but were sporadic and manageable. About a year ago they got much worse, in and out of hospital, trying all types of meds, pt etc. Still working to prevent them and ID some of my triggers but so difficult. I know stress is a big one and working on that. I'm doing my best to learn to live with daily pain but depresses me, makes me feel like a failure as wife and mom and am in constant fear of losing my job. Does anyone else deal with chronic pain and have any suggestions regarding better coping skills?

 

[Chava]

Chronic pain is depressing (mine is in my back but can cascade to whole upper body, eyeballs and everything). Have you tried any sort of elimination diet for the migraines? I quit eating all processed food. Also had to get off hormone medications. Also low inflammatory diet helps me too. I can enjoy a little candy or crap food if I'm feeling okay, but am still careful.

I've gotten a little better at responding sooner (pain can send me into total meltdown). Finding comfortable ways to rest, ice if helpful, music if helpful, and gentle distractions. Mindfulness helps many cases of pain but I can say I stink at it...but helps me a little to do mindful things like gentle yoga or stretching if I can catch the tension early.

It's hard to feel limited, like I'm just disappointing people (probably more my projection), and like I'm always behind on everything.

 

[Ivan the Elder]

I have had chronic pain for over 40 years. It set in not long after I was infected with Hep C. I was finally diagnosed with severe fibromyalgia when I went to see a female doctor in 2005. Apparently Fibro is very common with Hep C even if you have no direct symptoms of the Hepatitis. It commonly hurts from my neck to my hips on both sides including my arms, wrists and hands and sometimes down to my knees and feet. It can go as high as 8 out of 10 pain level and sometimes even higher. It never goes away entirely.

When it is bad I find the best thing to do is set aside a period of time no matter what else might need doing. During that time I relax in my most comfortable reclining chair and close my eyes. I then listen to slow, quiet music, just loud enough to drown out other sounds and to prevent any startling sounds or events. My favourite music is a very special kind of Chinese music call "Pure Land Chanting". This is nothing like what you might be thinking. It is beautiful music that is intended to help you relax. The lyrics are Chinese but that makes no difference. You do not need to know what they mean. They usually repeat over and over with just slight differences from verse to verse. The idea is to give you just enough to think about so that you won't think about any bad things.

It works very well for me if I can just remind myself to do this when I need it. These chants are freely downloadable from many web sites, just Google Pure Land Chants and you will find them. Some of the chants are designed to help you regulate your breathing. If you chant along with it just making sounds similar to the chant it is possible to lower your blood pressure by 15 to 20 points in just five minutes. This is what some of the chants are for. Others are for exercise such as walking that slowly speeds up and others are for such things as even helping to regulate childbirth contractions. They are a very interesting kind of music and for the most part very soothing and beautiful.

 

[shrinkingviolet]

Thank you @Chava and @Evan for your suggestions and sharing. I have tried some dietary changes but perhaps more is needed. I do love to listen to music and have never tried using it that way to soothe. I'm sorry you both suffer with chronic pain but just knowing you both can relate to how I am feeling is a comfort. I know my family tries but unless you are experiencing, don't know you can really understand.

 

[Ivan the Elder]

If you are at work and you feel a migraine setting in (aura?) then take the med immediately if you are using it. Try to set up something with your employer where you can retire someplace quiet for just 15 or 20 minutes and do some relaxation exercises including some music to drown out other sounds. I would think any worthwhile employer would agree to this since it is a form of disability. It is likely to help enough that you can get through the work day and may even prevent much of the headache. I know what it is like, I have had some migraines bad enough that it hurt to even look to either side for days afterward.

 

[Friday]

Make the best of the moments you have.

Both a chronic pain thing, and a PTSD thing... On bad days, when my son was little, I would put up a tent -or make a blanket fort- in the living room, and we'd order in pizza and watch movies all day.

I would have whole lists of things to do on good days, a short list of things I could do on bad ones... But taking the time on bad days to not beat the hell out of my self are the hard parts. & Best won.

 

[Ronin]

How's your breathing? Would different style of breathing & getting muscle relaxation get you anywhere, @shrinkingviolet ?

 

[InvisibleSun]

I too suffer from chronic pain..migranes, fibromyalgia, and autoimmune arthritis. It took me a long time to really be able to cope both physically and emotionally with the constant pain but what I have found really helps me is deep breathing exercises and meditation. It also helps with anxiety.

 

[Kailani]

I lived in excruciating pain for awhile from a car wreck; surgery that triggered PTSD; possibly related to physical abuse/ torture. Liked to sit by the water, my dog and cat, meds, distraction; movies, tv, books, internet, learning a simple instrument like the Native American flute, calming music, nature, nature sounds, comfort; lots and lots of pillows, hot tubs, deep breathing, friends. Hope you feel better!!!

 

[shrinkingviolet]

Thank you everyone for your responses and well wishes. @Evan , my employer has been understanding and even took out some overhead lights to avoid the light as a trigger. I just started trying breathing techniques, slow deep breaths and trying not to get anxious or stressed, which only makes them worse. The breathing combined with ice on my head has helped. I love your idea @FridayJones regarding the lists. Having some type of plan would make me feel less helpless and vulnerable, both of which brings on great anxiety. I really appreciate everyone's support and encouragement! :happy:

 

[Ivan the Elder]

I am very curious if anyone reading this thread has tried the Pure Land Chants. They have been very helpful for me. I found them a few years ago and I listen to them most evenings for an hour or so just to prepare for sleeping. It makes it much easier for me to go to sleep which has always been a long standing problem because of my fibromyalgia.

SV, it sounds like you are on the right track with the relaxation exercises. Anything you can do to reduce anxiety will help. It sure helps me. Many times during the day I just do a quick check to see if my shoulders are tensed. They often are, so I spend a few seconds to release the tension. This applies no matter what I may be doing, sitting in my recliner or out walking anywhere or driving.

 

[Chava]

Those gel eye masks that you can put in the freezer are wonderful (sometimes I need ice on eyes and on back of head simultaneously). Recognizing triggers for pain is a big deal, but also recognizing when the pain is coming. If I can ice soon the whole thing can settle...pushing through, even on meds, my pain usually just gets worse unless I allow time to rest early on in the storm.

Glad your employer is understanding. Lighting in most workplaces can be pretty horrid for migraines. I have a lamp in my office and my colleagues know when I'm staving off a migraine. Helps a lot (my migraines are purely hormonal but I'm recognizing what makes them better or worse). But I relate a lot to finding triggers and the right responses in terms of chronic pain in general.