What Does That Symptom Mean?

Right now I am contemplating the additional pain I have been having in my fingers/hands and toes/feet recently. I do not expect I have hand/foot cancer but that my rheumatoid is doing funny things. I am not researching online, I am going to send my doctor a message. That is the mature adult thing to do.

Normal people think that headache or scratchy throat is nothing. But to cancer people a headache is a brain tumor and a sore throat is esophageal cancer. Along with your cancer diagnosis  you learn that Dr Google and Wikipedia are not your friends for medical information.

But with cancer, every little symptom gets a new meaning. And the emotional stress can be amazing. Which is why its time to stop googling symptoms. Ask your doctor instead.

Managing Weird Symptoms

So we all get these weird feelings sometimes. Something starts aching, or tingling, or twitching, or pinching, or just not feeling right. We start having little debates with ourselves (where it is perfectly acceptable to talk to yourself, ask yourself questions, and answer yourself back) how long has it been going on, is it that big a deal, do we want to go to the doctor, do we need to get some medical care (if dripping blood, the answer always apply pressure and get to the ER stat). Then we try to make decisions on what to do and when to call the doctor, or not.

Eventually, it goes away or gets better (with or without medical care) and we move on. We might have a scar or a bottle of left over prescription pills and or a pile of bandages we stick in the back of the closet. Or do we move on, can we move on?

I have found that before my second cancer, every medical misadventure just went by the wayside. I didn't overthink anything because it wasn't really that important. Well, I do admit to asking about potential cancer crap because of my first diagnosis once in a while but I never really stressed.

Now I have to institute the five day and two week rules to prevent over-stressing and too many doctor appointments. The time limit means if something is not getting better within the time frame, its time for a doctor. Significant ailments, like extreme pain, very high fever get the five day. Anything else is on the two week rule. If I make myself wait, usually I end up not needing the doctor, or so I make myself think.

Part of relearning to be a semi-normal person after cancer treatment is learning how to handle potential ailments. I cannot let myself fall into the trap where every new symptom is a really BAD thing.

I also have learned that I need to learn to tell the story about any symptom when I get to my doctor (my old PCP taught me this). I shouldn't go to the doctor and say 'this hurts'. I need to go to the doctor and say 'this hurts, for this long, when I do this, and this is what I have done to try to deal with it'.

But with two cancer diagnoses, my tolerance for symptoms is very different. Somethings I tolerate a lot of and somethings I tolerate none of. Its my body and I get a lot of the same reaction from medical professionals - I have a lot going on medically and am not the run of the mill patient. So its up to me to make sure the medical people understand what I need and how to make me feel better (if possible).

Okay, this is a long and whiny post on me and my weird symptoms and how I deal. Frankly, I just want to be healthy again...

A long sad day

Yesterday I drove my parents to the memorial service for a neighbor from my childhood. It was a 330 mile round trip. By the time I got home it was nearly 9pm and 12 hours from when I left the house. I don't travel so well these days so I made a point of getting a lot of sleep last night.

Susan died last fall from breast cancer, six weeks after her diagnosis. She had ignored pain in her ribs last spring because she thought she had strained something. She was a farmer and very active. Also her tumor was so far back and so close to  her ribs, it may not have shown up on a mammogram. It wasn't until she started feeling many more symptoms did she end up in the emergency room and got some very bad news.

Her mother was also diagnosed with early stage breast cancer in early 2014. So in speaking with her two remaining sisters, I made a point of telling them both they should consider themselves high risk for breast cancer. They agreed and said they had already spoken to their doctors about it.

It was a nice memorial service and internment of her ashes followed by a family gathering at their house on the ocean. I got to catch up with both her sisters, mother, and another friend from 4-H back in the 1960s.

I also met a woman who has the same rheumatologist as me. Her rheumatoid was more advanced than mine and she has had six joints replaced - both ankles, knee, and hips. I can't remember them all. She has refused to go on to a biologic and has been on methotrexate for 14 years. She was in a wheelchair because of her recent surgeries. I never want to be in a wheel chair. Another sad reminder of the implications of my ailments.

Between a memorial service, a long drive, and seeing the implications of rheumatoid. It had an emotional as well as a physical toll. I need a day off today but have too much to do.

Okay, so what am I supposed to do?

The FDA issued a warning the other day about NSAIDs. They strengthened their earlier warnings on NSAIDs saying they can increase the risk of heart attacks or strokes. I've been on a prescription NSAID for about 4 years. Should I be concerned?

The official warning from the FDA says:

"Patients taking NSAIDs should seek medical attention immediately if they experience symptoms such as chest pain, shortness of breath or trouble breathing, weakness in one part or side of their body, or slurred speech."

 But I think anyone, whether they take NSAIDs or not, should seek medical attention if they experience those symptoms. Not helpful. Thanks.

The reason I am on NSAIDs for so long is my back. I take them for their anti-inflammatory properties to help with inflammation around my disobedient (pain causing) disks in my spine. I probably have inflammation in other areas as well.

I am not due to go back to my back pain doctor until September. But I will make a little note to ask about them. I am all for getting off any prescription I can. But in the meantime, I'll be on the look out for those symptoms....

I'm making a list

I have to make a list because I have no brains. My husband swears that my life is wallpapered with lists.

In early May, I saw my rheumatologist with the goal of doing something about methotrexate. While it has been good at controlling my rheumatoid, it has suppressed my immune system so that I would get a cold that would last 1-2 weeks every two months. I can't be out of commission that often from a stupid cold.

We made a deal where I would wean down my methotrexate for two months and increase my sulfasalazine and wait and see how I do. Well its two months and I go back to see her to talk options. I am not sure this combination has been that good. I have been having a lot of problems with my RA. Damn.

But I am making a list of issues and what to ask about options. Its a long list of issues and I am not sure how many options there are. Double damn.

Fibromyalgia issues

There has been a lot on line recently about fibromyalgia awareness. I don't need any more awareness thank you but felt I should share a bit.

My personal favorites are weight gain, muscular pain, fatigue and insomnia (thats a nice pair), and anxiety & depression, body aches, tender body points, and last of all, cognitive impairment a/k/a Fibro Fog.

Here are a few more notes from this article:

1. Fibromyalgia is primarily characterized by widespread muscle pain and tenderness.
2. Fibromyalgia can occur as a primary or secondary condition.
3. Fibromyalgia is often misunderstood and symptoms are often unrecognized, causing the syndrome to remain undiagnosed for months or years.
4. Ninety percent of fibromyalgia patients suffer with severe fatigue or a sleep disorder.
5. Fibromyalgia is associated with additional symptoms which seem distinct themselves but are actually included in fibromyalgia syndrome.
6. There are psychological as well as physical aspects associated with fibromyalgia.
7. Since there is so much variability in fibromyalgia, the syndrome does not manifest itself identically in all patients.
8. Diagnosis of fibromyalgia focuses on tender points but there is no definitive diagnostic test for fibromyalgia such as a blood test or X-ray.
9. Medication and non-medication treatments are used to manage fibromyalgia.
10. Fibromyalgia affects more women than men. The prevalence of fibromyalgia is between 2 and 4 percent of the population.

 But wait there is more!

You can read about the causes of fibromyalgia s well. And how it is a chronic condition and no it has absolutely nothing to do with any kind of arthritis.

Another story that makes me mad

I read this story on the UK's Daily Mail and it makes me mad. Basically what happened is a young mother who was pregnant with a third child was diagnosed with breast cancer, that had metastasized to her lungs,  shortly before she died before she died. Then her family was told she also had Ewing's Sarcoma at her post mortem.

Some diagnosis and treatment delays can be put on the mother's reluctance to have treatment because she was pregnant or that she blamed some of her symptoms on her pregnancy. Some of the other delays probably can be blamed on doctor's not listening to her as much as they could.

I can completely understand a woman who is pregnant is reluctant to take prescriptions or have scans because of the baby's  health. But if you ignore symptoms you can end up in dire straits. The article states that she had shoulder pain more than six months before her death but didn't call the doctor because she wanted to spend more time with her daughters.

But also I think doctors need to tell their patient's that the symptom could be something else and needs to be checked. And the patient's concerns should not go by the wayside. A breast lump could be a milk duct while pregnant but if it lasts, it shouldn't be ignored and probably deserves a biopsy.

And as someone who has multiple ailments, I really take the time to listen to my body and try to figure out what an issue may be from. Is it new or is it related to something I know about? If my feet or hands hurt, I attribute it to RA.But pain across my back usually is fibromyalgia. A cough would be very unusual for me and would prompt me to be concerned.

How long does it last? If it lasts more than a week and doesn't seem to be getting better, then I definitely call my doctor.  That is my rule of thumb these days.

How painful is it? If causing me extreme pain and lasts for more than a few minutes, I usually will call. If its moderate pain, I try taking pain meds and see how it goes. But if it recurs or is new and lasts, I will call as well.

And you should never be too busy to take care if your health.

Ailment analysis - pre and post cancer

Okay,y I admit I have been feeling pretty crappy off and on for the past few weeks. I don't know what it is. If I thought it was diagnosable, I might actually call my doctor. But as it is just a blahness feeling with nothing really specific, I am not doing anything.

But it does allow me to think about the comparison between a healthy-ish person, a cancer-ish person, and an achy-painy-ish person (with RA and fibromyalgia) and what are the differences in my reactions.

Symptom	Healthy-ish	Cancer-ish	Achy-Painy-ish
Sneezing/Sniffling/Coughing	Wait and see if it goes away and check out the cold medicine aisle.	Wait and see if it goes away.	It better not turn into pneumonia.
Owies	Wait and see if it goes away, then call doctor, maybe, eventually.	Is there a lump? Maybe its a tumor!!	Is there a lump? Probably just an RA nodule. Ignore it.
Lumps and Bumps	Ignore it	Is it where  a tumor might possibly be?	Definitely just an RA nodule. Ignore it.
Headache	Take an aspirin	Is it a brain tumor? MRI stat.	Just another achy-pain.
Blahness	Take some vitamins and nap more.	Is my blood work okay? If so, ignore it.	Blood work checked last week and again next week, I can't be that sick.
Dizziness	Must be dehydrated, drink more water.	Is it a brain tumor? MRI stat!	Just part of my new lifestyle.
Dripping blood	Band aid, butterfly or ER?	Band aid or butterfly?	Band aid or butterfly?

It takes me a lot to call the doctor these days. The more ailments I have the less likely I am to call the doctor.

I have been feeling blah but right now I am getting my blood work checked every two weeks because I added a new prescription for my RA and I see my rheumatologist in two weeks. I also know if I really want to, I can get into my primary care's office on the same day.

I don't wake up each day expecting to feel well. It can be a rare occurrence that I feel great. So these days, I'll just ignore most things.

Don't confuse me!

I have a looming appointment with my rheumatologist this week (which I finally put on my calendar this morning) to talk about how I am feeling. We might even change my medication, I don't know.

Then there is an article on '5 Signs Your RA Treatment Isn't Working'. (Why do we need to have articles that are 5 signs... or 10 reasons.... or 15 best...?) Now I am confused. The five signs:

1. Your Disease Activity Score Rises
2. You Don't Feel Well
3. You Develop Antibodies
4. Your Polyglutamate Levels Are High
5. Your Blood Shows Signs of Inflammation

I don't feel well and my blood shows signs of inflammation. But I have no idea what the other three mean, what they are and if I have them. Now I am confused. I thought I was fairly well educated on my RA but I guess I am not.

Now I know what my questions will be for my doctor on Thursday.

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.

Stepping away from Dr Google

It is time to step away from Dr Google. Dr Google can diagnose me with life threatening ailments all too easily. I do not believe Dr Google went to medical school, nor does s/he have a good bedside manner. Dr Google tells it like it is with no sugar coating. Dr Google says things like 'the prognosis for patients with (fill in the blank) is generally poor with low quality of life expected' and 'there is no known cure for (fill in the blank), treatment usually focuses on management of symptoms'. Dr Google sucks.

How well do I know Dr Google? Too well. I get a minor ailment - cold fingers which turn white. This is Raynaud's syndrome. Nothing that can be done about it except possibly taking blood pressure medication. Generally a benign lifetime ailment which strikes people in their 20's and 30's. So I'm a little unique that I got it later in life (but I am only 37 right now - I decided that is a good age - I was 29 for a long time). But if you ask Dr Google it can be related to Sjogrens, lupus and rheumatoid arthritis. My mind then tells me Dr Google has just diagnosed me with one or all of the above.

Then there was a little sore in my mouth which turned out to be a nothing - just a weird piece of scar tissue. Dr Google (with a little help from the dentist with no bedside manner) had me convinced it was cancer.

Then I start adding up symptoms and I have many more ailments. This one plus that one plus that one plus that one tell me that the combination means something new that I will stuck with. I can take any symptom checker on the planet and end up terminally ill in less than ten minutes.

So why do I spend so much time with Dr Google? Dr Google is far easier to reach than any other doctor. Dr Google lives on my laptop and smart phone. Dr Google is accessible 24/7. Dr Google doesn't have a secretary screening calls or putting email into spam folders.

I need to step away from Dr Google and wait for my annual physical in June. I refuse to go to my PCP any sooner unless I am dripping blood. I have no new life threatening ailments. I will be fine, unless Dr Google tells me otherwise.

Doctors have a history?

Wait, that can't be. Doctors are supposed to be all knowing and medicine should be black and white. This symptom means this, that one means that, and it is curable by this. None of this nonsense of maybe this, maybe that, never mind that once before they saw this and the result was that.

But no, that is not the way life is. Doctors have a history as well. Life is not fair. Doctors go through medical school and then get out in the real world as residents and start seeing patients who color everything in shades of gray. Women and men don't show cardiac symptoms the same way. Heck, every cancer is different - put ten patients in the same room with the exact same diagnosis and then start comparing their treatment protocols, how they reacted them, and their current medical health - nothing will be the same.

Doctors learn the facts in medical school and then learn the gray shades from their patients and how complicated things really are. In some sick way I take pleasure in stumping my doctors with my multitude of issues. But really I would prefer to be healthy. I also want a world with black and white medical answers, none of this shades of gray, with cures for everything.