Unrelenting pain

OK, I know this may not be a topic everyone wants to read about. But for those of you who share this particular facet of life with me at times, I could use your help, your thoughts, your ideas and perspectives. Anyone who would find this too depressing, stop here and read the other posts!

I have what’s know as a “recalcitrant” migraine – that means it’s always there, all the time. Much of the time I can manage it away with drugs and careful lifestyle planning, but at times it has its way. I’ve learned to cope with this through a variety of what my doctor calls “rescue drugs.” And careful planning for those situations when I have a migraine for a week, like how to get food, etc.

I know that my work contributes to it. Hours in front of the computer watching spreadsheets flash by doesn’t help. And even the games I like and other things I love to do. But the work is the hardest. I’m working hard to change this, and go into different lines of work that won’t be so hard on my eyes and my head.

All this is to say that, in spite of the migraines, I’ve got that somewhat under control. But then there are the weeks like this one… The last month I’ve been working really long hours trying to get some major projects done so I CAN change direction on my career. My body’s letting me know that the hours have been a little too long, in spite of stretch breaks, etc.

First, I got a deep pain in my calf that took about a week to resolve. No sooner had that gone away, then I ended up with a pinched nerve in my back. Some of you may know how painful that is. It’s almost unbearable, and every movement sends stabbing pain into your neck and back. I got some medicine for it – but here’s the rub. Pain medicine and anti-inflammatories, the two things I most need to solve the nerve problem, both trigger migraines. Migraines are, after all, all about inflammation of blood vessels and the muscles around them.

So, I’ve been waiting nervously to see if trying to treat the back pain would trigger migraines. Not to mention my stomach trying to handle these drugs on top of all the ones I normally have to take. And sure enough, today I am stuck with the pain in my back only a little better, and a migraine coming on. And my stomach hurts.

I swear, there are times. I just don’t know what to do. Obviously I will have to stop taking the pain pills and anti-inflammatories. I may have to deal with a migraine now too. I am wandering around the house helplessly not sure what to do. I’ve been lying down so much that any more of that will just make me stiffer and groggier – and I can’t sleep in any comfortable position. But sitting up and aimlessly walking around isn’t helping either.

Which just brings me to my question. How do you all deal with this, when your body is such a mess that it seems like it just isn’t worth it? There are times when I just get past the point of wanting to give up. If it were as easy as just lying down and going “OK that’s it, I’ve had it”, I probably would have done it half a dozen times in my life.

Obviously one thing that helps me is writing it down and hearing from other people. I don’t know why, but it helps. But I just don’t see how people manage this over the long term. If I had this kind of pain every day, I can’t help feeling like I would just give up – somehow, some way. I watched my grandmother live through months and months of horrible pain, and she was stubborn for a long time. She really wanted to stay with my grandfather. But ultimately, she did choose to go. And my great-grandmother before her. They both chose their time. But they were both well over 80. My body wouldn’t cooperate if I told it to do anything like that :)

And of course, when I’m through it and feeling better, I enjoy life. But the long periods of pain seem harder and harder to cope with. That doesn’t feel like life to me, just unnecessary suffering. I don’t know anymore how to cope with it. Repetition seems to make it harder, the more times you have to go through it, the more pointless it becomes, because you never get to make it go away or get well.

I dunno, I’m rambling. And I’ve probably sat in front of the computer longer than I should have right now. Any thoughts, ideas? How do you deal with this? Just hearing your voices will help, I know.

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11 thoughts on “Unrelenting pain

  1. Freesparrow says:

    Dear Teresa,

    I honour your courage and honesty in posting this.

    I have had MS for nearly forty years. 10 years ago, I developed related neurological complications which made it impossible for me to sit still for any period of time, difficult to drive and impossible to get worthwhile sleep. On the advice of my doctor, I took a particular medication which gave temporary relief but also terrible side effects. At times I felt quite mad, and might have been close to it. The trouble lasted for almost seven years.

    In hindsight I wish I had explored alternative health solutions. A specialist in Chinese medicine has helped immensely through acupuncture and some herbal medicines in the last two years. Yoga helps as well, somehow bringing new energy and, certainly, improved flexibility.

    When pain brings such serious disruption , it is tempting to take the pharmaceutical solution, and that may indeed be necessary for a while. But have you thought at all of seeking other opinions or a complete medical reassessment – just so that you have covered all the options for yourself?

    A change in lifestyle and a break from work may be necessary too. It was for me, and ultimately I had no choice about this. I had an extended break, then a staged return to full time work, a complete change in everything.

    I’ve read your blog on and off over the last few years, and have also read some of your wonderful books. You’ve given so much to others through these publications and I hope that a wave of gratitude and care washes over you now, bringing healing with it. I will include you in my own absent healing list and send you love and blessings.

  2. Freesparrow says:

    Teresa, I wanted to add something. The complications from my illness have not gone away, but have simply become more manageable. I know them so well now that I can sense when I’m at risk and act accordingly. Sometimes I simply have to rest.

    Migraine has so many potential causes and you haven’t indicated what yours might be. My younger sister was troubled with migraine for years until a chiropractor helped. Treatment may depend on the cause.

    Warmest regards.

  3. Hi Freesparrow, thank you for your wonderful thoughts. I did spend a whole year without any medicine, to explore dietary, yoga, and other alternatives. Nothing really worked, this is a hereditary problem linked to hormonal causes, and only a very strong medicine (combined with certain vitamins and lifestyle changes) seems to help. Like you, I find the migraines somewhat manageable and familiar – the worst thing is when something else comes along that disrupts the “system”. Like a severe back pain that I can’t treat without triggering migraines… that’s the kind of thing I just don’t know what to do with.

    I do know that this wouldn’t happen if I wasn’t working so much, though some of that is inevitable because I do have to pay bills, but I am in the process of a career change that will involve fewer hours at the computer and more time to exercise and just do other things. I know I have to start exercising to avoid physical pain, which I can’t treat. And of course it is better for my health in so many other ways.

    Yoga and Tai Chi are at the top of my list, they may be things I will actually enjoy and when I have done some yoga in the past I have definitely benefited from it. I use the stretches and meditations when I need them but would benefit from more regular practice. One reason I moved here to Olympia is that this area is abundant in alternative lifestyles and practices like this that I could go to – unlike where I was living before.

    I’m glad you have found some alternatives that work better for you than medicine with unpleasant side effects (I feel lucky every day that the one that works for me just makes me a bit sleepy at times but nothing worse – I know it could very well be otherwise).

    Thank you for your thoughts and healing blessings. – Teresa

  4. Freesparrow says:

    Good luck :). I’ll still keep you on my healing list. In retrospect, I’ve learned so much through my own illness, that it all balances out. In the worst of it, however, I would not have thought that!

    If we can get through the worst times, there is indeed hope. Good friends and a certain zen attitude help.

    Many blessings

  5. TarotByArwen says:

    I have often said if I could just remove the lower half of my body,I’d be happy. Of course, I don’t mean that.

    What I do is whine, Teresa. Serious, full out kvetching to my friends. Sometimes I cry because it helps me get the internal emotional toxins out (I’m a Pisces so that figures, right?)

    I think talking about it really helps me. I will never tell you “suck it up” or anything like that. I may not know your particular pains, but I do understand pain as a constant companion who doesn’t know how to take “NO” for an answer. Hang in there, honey.

  6. veronikab says:

    Several years ago I got rid of chronic back pain with the Feldenkrais method. Now even if the pain does come back, I know how to deal with it. And I also realise that pain in one part of the body can be caused by bad positioning of another part of the body, so stretching one’s back does not necessarily alleviate back pain, but working on hip joints can. I am not saying that it is a cure-for-all, but from what you describe of the various pains I think it might well be worth a shot.

    OK, so I am a Feldenkrais addict, but I have been doing yoga and Pilates and dance and find that Feldenkrais is a much quicker way of dealing with the problem – especially when it is so bad that I cannot do even yoga.

  7. hmm. Looks interesting! At least for the back and shoulder pain, which I’m now realizing are going to be with me if I continue to do this computer work and don’t change something else about how I exercise, sit, or move!

  8. Elli says:

    Hi!
    I’m Elli. I just googled ‘how to deal with long-term pain’ and this came up so . . yea. Anywho, I get migraines (not biggies like yours, but I understand ur pain) and I have had a headache for a year and a half because of a neck injury/concussion. I see a chiropractor that specializes in the upper neck and it has been key to keeping my sanity. I also see a massage therapist. I think it would really help your pinched nerve if you saw a chiropractor that specializes in the back! I could ask mine for a recommendation of someone good in your area (I’m in Seattle).

    You give me courage and make me see that my pain really isn’t bad enough for it to be okay for me to give up. I understand what you mean when you say it feels like unnecessary suffering . . .I’ve had a really hard time socially. I’ve only just graduated from high school, and I’ve become really alienated from all my friends because they can’t seem to understand that I’m tired and in pain, which is why I don’t have a license or a job or a boyfriend etc. Yea. I’ll stop rambling now : )

  9. Hi Elli,
    That must be hard – high school kids really have a hard time understanding these things because most of them have no idea what it feels like to deal with pain day in and day out and how discouraging and depressing it can be. The good news is that there’s a good chance yours won’t last forever, and you’ll find better and better ways of dealing with it (both physically and mentally) over time.

    You’re right, I need to start seeing massage or chiropractors. I’ve just moved to this area and I don’t even have a dentist yet, lol. Or a vet. So I’m working on setting up all the little things like that in my life and this will be on the list!

  10. Hi,

    I think all of the various ways mentioned can be of help. My husband suffers from some rare cluster migraines. His neurologist said that only about 4% of men suffer from these. These types of migraines last for about two months, twice a year.

    We believe in more natural approaches in life, herbal medicines, eat right, organic is best, exercise, yoga, tai chi and meditation, but we found nothing that would help him until the neurologist prescribed a medication that he said is not normally considered for migraines, but has helped many of his patients. Lithium.

    Yes, hard to believe, but they have helped with the pain tremendously. The lithium seems to knock out the pain quickly. He also recommended 100% oxygen during this time. Anyway, wanted to share our experience with these rare migraines and also share what we have learned that has helped him…

  11. Wendy says:

    Hello. I feel so bad for …both of us. I typed “I can’t take this unrelenting pain any longer” into the browser while sitting here at work trying to appear normal. And found your site:
    I have: 1) Deep unrelenting fatigue. Adrenal fatigue/CFS? Nobody’s really sure. Trying adrenal supplements since my cortisol levels test low. 2) Pain from the buttocks down to the calves, both legs. Sciatic? No one really has an answer. Trying exercises from the chiropractor. 3) Chronic deep painful cough, slowly worsening since I worked in a factory in 1983. And post-nasal drip. Lungs and sinuses are clear, the pulmunologist says. He doesn’t have an answer or even treatment, except to continue taking Nexium for reflux. (we’ve been through all the nasal sprays and inhalers via an allergist). 4) Daily nausea waves and abdominal pain. Ultrasound tests and scopes say everything is normal. 5) Strange restless-leg type problems… in the abdomen. And last but not least: 6) I woke up 11/11/2006 with a horrid head pressure, balance and headache, with pressure around the eyes that makes it so hard to work, and a horrid brain fog that has dropped my IQ. I keep sneaking into the conference room to lie down. No answers, and it is slowly worsening.
    Here’s MY rub:
    – The healthy diet I bought into way back into the 80s backfired. I am allergic to just about all fruits, vegetables and grains. (Growing Things, the allergist says. And I hate eating dead critter.)
    – The more processed/cooked food diet that I am forced into is kicking me into insulin resistance syndrome and causing reflux.
    – The natural/alternative doc says the Nexium I take for the reflux is keeping me from absorbing nutrients and is contributing to the terrible fatigue, and also has caused Leaky Gut Syndrome, which is causing further food sensitivities.
    – The hypoallergenic meal replacement powder I tried to try and get nutrition without allergens has high potassium, which worsened the adrenal fatigue.
    – If I stop the Nexium, the cough gets intolerable to where I can’t even finish a sentence without coughing.
    -The Advair inhaler and steroid nasal sprays that helped the lungs suppressed the adrenals, possibly causing the Adrenal fatigue.
    – The anti-reflux low-carb diet that the osteopath wanted me to try helped the cough dramatically but also dramatically worsened the head problems and fatigue.
    – Every cough sends pain into my head and increases the head pressure.
    – The fatigue and head pressure keeps me from exercising. Even a walk down the block brings on dizziness and pain. Like being on a boat with a migraine. This is 24/7, never a break, since 2006. (My skis, roller blades, yoga mat and nordic track sit unused. I’ve gained 20 lbs.)
    – And here’s the final strange problem: I took up meditation as a coping mechanism. However, over the last 2 years I have had to shorten meditation time from nearly an hour a day to now less than 15 minutes. Every time I meditate I get an intolerable sensation like Restless Leg Syndrome, except it’s in my abdomen. I cannot hold still when this occurs. It comes on within 5 minutes every time I meditate. I’m still trying, but I meditation has become just another nasty unpleasantness to kick myself though.

    Some of it has come on slowly. I could see the food sensitivities worsening as time went on, and the cough. But all I’ve experienced, with everything I’ve tried, is increasing symptoms/problems. So the very very worst of it all is that I feel it’s all my fault, that I should have been able to get off this terrible course, and I still torture myself daily with questions: “should i eat this should i drink this should i lie down should i try to exercise maybe i’m taking the wrong supplements maybe i’m taking too many supplements maybe i should try another neurologist maybe i should try Mayo Clinic (i did, they turned me down), maybe I should try yet another chair, yet another chiropractor, yet another… What?”

    I’m 46 years old. And the discomfort is 24/7. No breaks. No good days. Better days, but no feeling-well days.

    So I totally identify with: “How do you all deal with this, when your body is such a mess that it seems like it just isn’t worth it? There are times when I just get past the point of wanting to give up. If it were as easy as just lying down and going “OK that’s it, I’ve had it”, I probably would have done it half a dozen times in my life.”

    I tried that–the lying down forever idea. But sooner or later you have to get up and pee. Then you get a glass of water. Then you pet the cat, who comes in to say hi. Then you bring in the newspaper. And there you are, back in the same old same old slog through your daily life.

    WE TRY SO DAMN HARD TO HANG IN THERE AND DO THE RIGHT THINGS…but the reward just doesn’t come.

    So I just wanted to let you know, shadowmeteresa, that you are not alone. When you do have good times, may they be wonderful.

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