Living with pain

Every day my morning starts with 'ouch', 'ow', 'owie', and more. And my husband looks at me and says are  you sure you are are okay for whatever my day is planned. I say yes and suck it up. And maybe take a pain pill.

Yes, that's my life. I don't ask for pity. I cope. I take steps to work on my pain.

I have upped my arthritis medication and go back to my rheumatologist in July. I also have a 'procedure' (which involves sedation and lots of needles) on at the end of June which will alleviate a lot of back pain. I see my primary care (well her nurse practitioner becuase she will be on maternity leave) also in June where I will talk about my hand pain from the stupid (untreatable) ganglion cyst and my knees' general lack of cooperation with my desire to live a pain free life.

All those fancy pain medications you see advertised won't help me much. I have already tried the fancy ones for fibromyalgia and they haven't done much for me. And the other fancy medications, the biologics, for rheumatoid I can't take because of my cancer history, blah, blah, blah.

I am being honest here. I usually am honest in my blog but sometimes I elusively play with the truth and am not as open about some topics. What I do is I withhold the truth until I want to talk about things.

I mean living with pain is not like living with cancer or anything but it does kind of suck in a way. I do get all the good drugs.

But as I said before I am not asking for pity. And if I anyone says 'I'm sorry' to me about this post, I'll be sure to smack you silly next time I see you.

I get so confused on all this progress business

I saw this video and thought 'wow this is great news, more progress in treating late stage breast cancer'. Then I started thinking, did I see a different article on this new drug before or is a new one that I hadn't seen before. I get so confused.

I do think this is progress but I don't know if its 'new to me' so to speak or if I did blog about it previously. Well, either way its a nice story and its nice to see progress. But further testing is needed, its only available in clinical trials, and more trials may be required so it is still months or  years away from being available.

Why go to a cancer center?

So why go to a cancer center for your treatment? Why is it so important? Do you want someone to treat you who treats one case pf breast cancer a month or someone who treats dozens of cases each month?

There can be little bitty differences in tests, biopsies, side effects and a lot of other things that may not be significant to a doctor who sees them as being in the normal range but to a specialist as a group they may provide an indicator of something else.

This video actually does a really good job of explaining the importance of going to a specialist and a cancer center.

It is also true of going to specialists for a lot of different medical issues. It might even justify all the specialists I see - medical oncologist, radiation oncologist, breast surgeon, endocrinologist, rhematologist - that I see regularly in addition to my primary care and my therapists.

Fibro what?

So I was told last September that I have fibromyalgia by my rheumatologist. I had been referred to her by my pain management doctor who had been treating me for my back pain from degenerating disks. I also had pain in lots of other places that was getting worse over the years as opposed to better. His diagnosis to my rheumatologist was myofascial pain or fibromyalgia with possible rheumatoid arthritis.

Well the rheumatologist confirmed within ten minutes of meeting me that I had fibromyalgia. My pain doctor had put me on Savella, Lyrica, and Cymbalta at different times in the past to treat my pain. Those are the only medications approved to treat fibromyalgia. They are also used to treat other things which is why he tried them. None of them really worked for me.

Now there is a study done (because we needed another study) that Savella and Cymbalta don't really work for fibromyalgia and if they do the side effects can be pretty bad. And they don't do much for improving fatigue and quality of life. That is so helpful. Back to the drawing board to all you fibro medication researchers!

So what is fibromyalgia? In my none medical school terms, nerve pain is amplified and it makes you tired and cranky. Officially the symptoms are these:

1. "In 1990, the American College of Rheumatology (ACR) listed two primary criteria for the classification of fibromyalgia. 1) A history of widespread pain involving all four quadrants of the body (right side, left side, above waist, below waist) for a period of at least 3 months.
2. The second criteria from the ACR which points to fibromyalgia is, upon physical examination, the presence of pain in at least 11 of 18 tender points when touched or pressed with force amounting to the equivalent of 4 kg. or 9 lbs.
3. More recent data indicates that there may be an increased sensitivity to pain throughout the body, pain may be migratory (move around) or may exist as chronic regional pain. Most experts are said to believe fibromyalgia results from abnormal central nervous system function. Response to stress and psychobehavioral factors may also contribute to fibromyalgia.
4. Fibromyalgia primarily occurs in women of childbearing age. Children, the elderly, and men can also be affected. Besides the defining symptoms of pain and tenderness, there are many nondefining symptoms associated with fibromyalgia including:
• Fatigue, night sweats and sleep disturbances.
• Memory difficulties and cognitive difficulties.
• Tension or migraine headaches, temporomandibular joint syndrome, rib cage pain (noncardiac chest pain), chronic pelvic pain, plantar or heel pain.
• Fluctuations in weight, heat or cold intolerance, subjective feeling of weakness.
• Ear-nose-throat complaints, multiple chemical sensitivities and a wide array of allergic symptoms.
• Hearing, vision, and vestibular (balance) abnormalities.
• Heartburn, palpitations and irritable bowel syndrome.
• Evidence on echocardiogram of mitral valve prolapse, esophageal dysmotility (muscles of esophagus not working properly), neurologic conditions causing hypotension (low blood pressure) and syncope (fainting).
• Mood disorders such as depression and anxiety occur more commonly in people who have fibromyalgia. "

Of these I can say yes to 1, 2, 3, and 8 of the 9 bullets in number 4. I don't think I have the cardio issues.

But otherwise I am a very healthy person.

DNA mapping

Hmmm.... I like this concept of mapping the DNA of  cancer patients. Actually the UK's National Health Service has announced a plan to map the DNA of 100,00 patients with rare diseases and cancers. (And the immediate comments on the article are how did the British government come up with the 100 million pounds to pay for this during the time of austerity.)

Politics and financing (and squabbling) aside I think this is a good idea. I have always wondered why I have been lucky enough to have cancer twice while the rest of my family remains healthy. If my DNA would tell something about it, I would welcome the opportunity to learn more about me.

Actually I would not be surprised if a lot of the secrets of us less than healthy people could be discovered in our DNA. Now that the price has dropped significantly to between 5 and 10 thousand pounds, it is getting within the range of affordability (come on, work with me if some cancer drugs can cost upwards of $100,000/year this is affordable). Maybe a little more money should be spent on looking at why some people seem to get the ailments. (I could be their poster child.) Instead of just throwing money at a cure.

An ounce of prevention is worth a pound of cure.