Overloaded with Instructions

I get it. I have a lot of ailments so I am in a lot of groups and follow a lot of organizations for their health tips. So I get lots of email. Tons of email to be precise. Some of it gets the delete button right away - especially if the subject line doesn't tell me anything.

But then I read glance at a lot of them before deleting. But often they provide suggestions or instructions how to be healthier for whichever ailment. But now I am overloaded with instructions/suggestions this week:

• No more asparagus for me because it can lead to breast cancer spread. I like asparagus. Damn.
• Exercise can reduce breast cancer recurrence. I'm exercising, I'm exercising, I'm exercising.
• Milk and beef can trigger RA. What? No more cheese?
• Yoga can help with fibromyalgia. Too bad my doctors told me no yoga because of my bad back. And my knees don't bend that way.
• Fibromyalgia can cause dizziness. This is actually good news because we have been trying to figure this one out.

This is a partial list of what I have received this week. Last week there was something about coffee being bad. I have gotten instructions on so many things, I can get confused (which is not difficult at times). 

I realize one option is to stop reading about my ailments and receiving these emails. But I think it is important to understand as much as possible on your ailments. The more you understand about what is wrong with your body and what you can do to improve your situation.

On the other hand, it is definitely an overload. I do not have time to read all the emails I get. I pick and choose which get deleted immediately. Some I save for more in depth reading scanning at a later point. 

So not only do I get bombarded with ailments, I also get overloaded with instructions. Sometimes I cope by taking a nap or going to the gym to burn off stress. A nap usually sounds best.

Until I Drop

Every day that I go out the door (which is not everyday), I go until I drop or that is what it feels like.

Yesterday is an example: three doctor appointments at two different places 45 minutes apart, two stops at stores, one stop at my parents for 15 minutes, and then home. I was so tired by the time I got home, I was barely standing. I took the easy way out and got in bed for the next two hours.

At my last stop, at the podiatrist that I have been going to since last summer, I ran into a friend who worked there. I knew she worked in a medical office but I didn't know she worked in that one. She only works two days a week which explains why I haven't run into her before. When I told her my schedule, she said something to the effect of that I must be exhausted after being out for so long. She knows me.

Today I am still in bed and don't have to go any further than the laundry room and the mailbox. I will enjoy myself. And I might need a nap. I can get exhausted staying home.

I Travel In Elite Circles

Well I don't travel actually. But Lady Gaga of all people and I have something in common.We both have fibromyalgia.

Her fibro is bad enough that she has cancelled the European leg of her latest tour. Because of pain and fatigue.Why do those terms sound so familiar to me?

Think of it this way, if a famous personality who makes money by going on tour to sell more albums (or copies of songs downloaded - or however they count that these days) has to cancel, she must be in a lot of pain.

I can relate. (I wish I had a European tour to cancel - as long as I went to a lot of beaches and my husband was there, and someone else carried all the luggage) . I am happy these days with making it through going to the gym and the grocery store before I collapse.

I hope she feels better and gets some good pain management to help.

Frustration

In the world of continual medical research and advancements - that every day allow us to get improved treatments for ailments - I feel very frustrated. No I am not on top of all research that is going on so I am sure there is a lot that I am not aware of. But from a patient's point of view it can get very frustrating.

For example, yesterday I read something about how a century old vaccine for something else is being tested to see if it would work as a vaccine for fibromyalgia. That sounds  great. A way to prevent others from getting fibro - which is no fun.

Ahem, but where is the cure? Just because they can prevent someone from getting something they still need a cure. A vaccine only reduces one's risk of getting the ailment and not preventing it 100%. Look at how well the Shingles vaccine works? How many people get the vaccine but still get shingles? I don't know the number but I know it exists - like the flu vaccine.

So where does this leave us patients with ailments? Frustrated. How long are we supposed to wait for the cure? We have the 40+ year 'War on Cancer' and the Cancer Moonshot. And we are still waiting.

I Need to Stop Reading Medical News

I usually like to read the latest medical news. Mostly because I have a lot of medical crap going on. I like to see what is going for advancements and research. I mean maybe some day someone will find the cure for me and all my ailments and I can go back to being a healthy person.

But sometimes the news isn't what I want to hear and isn't very good. Like today.

"Fibromyalgia Worsens Function in RA" This is not what I wanted to hear. Also there is a higher prevalence of fibromyalgia in patients with RA. But there are treatment options for patients with both RA and fibromyalgia.

But still, I don't like the part about worsening function. Crap. Maybe I should read the political news instead.

In My Inbox

I get so many emails every day from some of the many websites where I am registered. Most of them are health related (becuase I am still waiting for that cure). Usually I can hit delete on many of them because they don't appeal to me for some reason or another. Then I move on to the rest of my day (after the USA today crossword puzzle, checking Facebook, and my blog).

In my inbox this morning was a startling, shocking, upsetting email. Its title was: "Is having bacon good for fibromyalgia?". First of all let me say that I really hate emails that start off with a question. They are just click bait. And I hate that.

Next, bacon is a favorite food. I know its not healthy but if I can have bacon I will. I don't like other breakfast meats much so its bacon or nothing. And if bacon can be incorporated into dinner, that is just fine with me. (A favorite is cook a couple of pieces of bacon - one per person - in a fry pan. As the bacon is almost done place scallops on top. When the bacon is done, the scallops should be too. Serve scallops with bacon crumbled on top.) I have bacon maybe every few weeks at the very most.

Don't tempt with bacon in click bait. Its just wrong. But I read the email and found out that bacon isn't that good for fibromyalgia.

"Bacon is highly acidic and the fatty acids it contains can easily aggravate your pain symptoms. Having a lot of pork can result in massive inflammation of your joints. Just imagine eating bacon for breakfast and having to spend the rest of the week in pain, it can really affect your lifestyle."

That is just wrong. Bacon is good for everything as far as I am concerned.

"It is a big NO to take bacon although some suggest that having bacon in moderation is fine. If you suffer from any muscle and joint pain from fibromyalgia, it is recommended that you stop the bacon intake. If it is a tough task for you to cut your bacon completely, a big tip from us is to replace your bacon with turkey bacon which has just half the calories of pork bacon. There are some brands that have no saturated fats. Pick those."

No. Way. Some days breathing causes pain so I can't see that bacon can cause any worse pain. And turkey bacon is full of sodium, more than pork bacon so its really not better for you anyway.

But I didn't know pork could cause inflammation and will check into that part. And I will figure out how to incorporate bacon into our menu this weekend.

Perkiness and fatigue

Sometimes I wake up and am very perky. This annoys my husband to no end so that if I feel the least bit perky I make sure he knows (I love aggravating him sometimes - part of a happy marriage is being able to annoy your spouse).

Recently I have been dealing with fatigue. I have no idea why I have so much fatigue but I do. I have had three two hour plus naps in the past five days. This includes sleeping fairly well at night. If this keeps up maybe I should go to the doctor... No wait a minute, I have enough doctor appointments these days. If I make another doctor appointment it will be because I am dripping blood or in so much pain I am unable to move (but then how would I get there if I couldn't move?)

Yesterday I had some killer muscle cramps at the gym and was bent over in pain as a result. My hamstrings went into spasm and I could not move. Another woman at the gym noticed and came over to ask if I was okay. I wasn't but I stood still for a while and then tried stretching my hamstrings for a while before I left. When I got home, I went to bed before having lunch. Once I ate, I slept for nearly 2.5 hours.

The 'best' thing about fibromyalgia is that pain gets magnified. So when you get muscle cramps, the pain gets magnified.

But I digress. If I get enough sleep, I might be perky (and if I am, I make sure my husband knows). But I still might need a nap later in the day. If I don't get enough sleep, I probably won't be perky. The real problem is when I am in too much pain to eat, sleep or be perky. Then it really sucks.

I think I am tired

Its 10:49 AM and I am still in bed. I was going to go to the gym today around 11 but that's not going to happen. I do have a doctor appointment at 215 PM that I will go to. But I am tired.

This is what happens when I make any attempt to be normal. I went to bed at 9:30 PM last night. I admit that is a little late for me. I just over did things a bit this weekend and I didn't sleep well on Friday and Saturday nights.

We had a party Saturday afternoon and everyone was gone by 8:30 PM and I went to bed around 10. I rested for a bit in the morning before the party. Yesterday I did go out for a few hours in the afternoon. But today I am exhausted.

Unfortunately when I do too much (and it doesn't take much to for me to get to 'too much'), it takes a few days for me to get back to normal. Luckily this week I have a few days where I can take it easy in a row.

This is what I hope the Social Security Disability people will some day understand. I can't work or do anything for more than a few hours before I have to rest. If I push myself to do anything that involves more than a few hours, I pay the price. I was trying to work four hours a day, two days a week and it was too much for me.

But I digress. I will spend three days recovering from two days of pushing myself. (Thank you fibromyalgia.) My first goal is to get my butt out of bed and have some breakfast.

Fibromyalgia

How is life with fibromyalgia? Well, not so fun.

Let's see, there is random pain in my body. There is fatigue (and insomnia). There is cognitive impairment. And depression.

Sometimes its hard to decide how I feel from a specific ailment. I mean which pain is bad back, rheumatoid, fibromyalgia or osteoarthritis. I can't always tell. My doctors say it can be very difficult to tell and not to worry about it. But I can tell you when I lie awake at night that I will be exhausted in the morning, like today.

And there is another factor that causes so much fun in my life. Cognitive impairment. Yes, that is like chemo brain that doesn't go away.

Depression? Yes, well lack of sleep, no brain cells and random pain would depress anyone. This is why I keep being asked if I have any suicidal thoughts. I can tell you I do not. Because it would be yucky! I would like to stick around for as long as possible.

I hadn't really contemplated the impact of all the joys which come with a fibromyalgia diagnosis. It came on top of my RA diagnosis, or mixed in with it. But I read this article this morning about a woman's lawsuit against her former employer because she was dropped from their disability plan after she left her job because of health reasons due to fibromyalgia.

I get the same issues she does. But I could never job three miles every day.

Deep thoughts in the middle of the night

Insomnia, partly caused by fibromyalgia which gives me fatigue and insomnia, causes deep thoughts in the middle of the night. Sometimes I actually remember these thoughts to ponder them further.

So what occurred to me last night was that my most significant health issues to me is no longer cancer. Cancer has definitely settled back to lurk but no longer dominates my life. I get to go to extra doctors, because of my medical history, we need to be sure, but cancer is not the focus. This is  nice mind set. I don't have the need to dwell on it in the middle of the night. Nor do I feel the need to dwell on it. Cancer is not worthy of any stress.

Back in July I saw my medical oncologist for my annual follow up. She took me off Femara after five years. The thought process was that Femara has not been shown to have additional benefit after five years and it could be contributing to my joint pains. But she said I could restart it if I felt stressed about potential recurrence. I didn't think that would be a problem and I am not stressed. And I might  have less joint pains than before.

Also my thyroid cancer has not been problematic. Its just there and I have extra blood work because of it. But its not a stressor.

However my rheumatoid and fibromyalgia tend to rule my life. If I bend wrong or spend too long out and about, they remind me they are there. Or I can not be doing anything and they tell me they rule my body. And fibro keeps me up at night.

Something is going to do me in at some point but I am not going to worry about it. Cancer doesn't deserve to stress me out. It doesn't deserve anything. Its just a piece of crap anyway. I am not going to waste my life worrying about cancer any more than I already have.

Maybe I'll get a good night's sleep tonight.

More wonderful medical news

Of course, I get all the fun stuff. I have both rheumatoid arthritis and fibromyalgia. It never ceases to amaze me that some people do not know what either are. Yes, Virginia there are disgustingly healthy people out there who do not know about yucky unhealthy stuff.

So it overjoys me to read new research about my ailments. Especially when I find research that says the really lucky people who have both RA and fibro, have many more problems with RA than people without fibro.

One article is titled: Fibromyalgia Symptoms May Mimic High Disease Activity in Patients With Rheumatoid Arthritis. That title sort of says it all doesn't it? So even if I don't really have high disease activity, I will just feel like I do.

This article is from Egypt and is titled: The Impact of fibromyalgia on disease assessment in rheumatoid arthritis. I has some lovely charts and tables that compile the list of issues.

Table 2. Somatic manifestations of studied rheumatoid arthritis patients.

Somatic manifestations percentage (%)	Patients		P value
	RAF (25)	RA (25)
Widespread pain	100	28	less than 0.001
Sleep disturbance	68	32	0.011
Fatigue	92	52	0.002
Morning stiffness	56	36	0.156
Headache	56	24	0.021
Depression	88	40	less than 0.001
Anxiety	72	40	less than 0.001
Parasthesia	76	32	0.002
Cognitive symptoms	56	16	0.003
Dysmenorrhea	20	20	1
Irritable bowel syndrome	16	4	0.157

RAF: rheumatoid arthritis with concomitant fibromyalgia, RA: rheumatoid arthritis.

When I was diagnosed with both RA and fibro, my doctor told me I probably would not be able to tell which ailment caused which pain. Sometimes I can but sometimes I can't. And sometimes I just don't care.

But now that I know fibro makes my RA feel worse, I'm not going to suck it up. I think I should switch to chronic whininess. I think chronic whininess outweighs chronic pain. Some research news inspires whininess.

Blocking out life

Sometimes I feel I need to ignore life and the rest of the world and focus on my ever growing list of ailments. Its not that I want to, its that sometimes my body insists on being the focus. Like the past few days. And probably the next few days.

I have many other things I would like to do but I have to focus on my health. I will fit in other 'stuff' around my health crap. And it really is crap right now.

I have a feeling I did some damage to my knee, how much I will learn more on Wednesday. It hasn't been contributing basic things like flexibility and stability to the rest of my body for the past few days. This means I can't go to the gym. Actually I don't dare go to the gym. But I really want to go. I think exercise will help me deal with stress. And I have blood work this week as well as two other doctor appointments. Right now I am getting blood work done every two weeks.

I also broke down and succumbed to pressure from my new therapist to try the new fibromyalgia support group. I did point out that I do have multiple ailments and fibromyalgia is one of the less challenging ones to me at this point. I mean its there. It causes me pain, fatigue, and, my favorite, insomnia. It isn't progressively causing damage to my body or lurking in the background, threatening to recur like some of the others.

I was told that the fibromyalgia group should help provide 'coping' strategies. I agreed to go once to see if these 'coping' strategies are really covered and potentially show any benefit for me. But my cynical self doubts that.

I am just stressed, anxious, in pain, tired, and a few other things so life isn't as much fun right now. Call me a cranky cynic right now.

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.

More fibro fun

Fibromyalgia is my favorite 'fun' ailment. What makes it so fun? Its the combination of pain, insomnia, and fatigue. If you are tired, sleep is always the cure. But insomnia to go with it? And the pain. Its so much 'fun'!Take a look at how much fun it really is.



And if you can figure out a way to sleep with insomnia, please let me know. Or to get my brain to function again with its fibro fog?

Catching up on sleep and rest

Today my goal is to catch up on sleep and rest. Friday I got stupid and got up early to go to the gym so I get my nails done after and not have to worry about messing up my nails by going to the gym later.

Yesterday our cat, who has been losing way too much weight, started waking me up about 330am because he was hungry. I actually got up at 545am and made him cat food (pureed canned salmon in the food processor) and fed him. (He's 20 years old and blind, deaf and can't smell) Then I gardened, did a bunch of other stuff, met my family for dinner, and stayed up until midnight. What was I thinking? It felt like a good idea at the time. My husband let me sleep late, which was only 8am and he got up and fed the cat.

Its 11am and I am still in bed. I got up and got the paper, coffee and ate some bacon my husband cooked. I am contemplating taking a shower in the near future but it may take me another couple of hours. Tonight I will go to bed early and not stay up until midnight.

My life is a fibromyalgia commercial.

Which consists of body pain, fatigue and insomnia. Combine all those and you can figure out why I need my sleep and rest. Staying up late and getting up to early are not good for me.  And catching up on sleep and rest takes a few days. But I have to go to work tomorrow morning. Damn.

Help I need a nap!

Yesterday I went to work and by mid-day I could barely keep my eyes open. I came home and went to bed at 230pm, after struggling to stay awake as I drove. I woke up just after 5 when my husband informed me I had a phone call  - a scheduled call for some volunteer work.

Then I went back to bed about 9pm (which is normal for me these days) and slept all night. Today I am headed back to work but feel like I will probably need a nap again. I do need to get to the gym too. I skipped it yesterday because I thought I might fall off the bike or elliptical if I fell asleep.

I have been too busy recently (even with all the snow days) and just feel behind on my sleep. Tomorrow I don't have to be anywhere until 10am. So I could sleep in a bit. Saturday I can sleep late if I want but have to be ready to leave by noon. But Sunday? I can sleep as late as I want. This could be noon.

And the cause of this need to sleep? How about fibromyalgia and RA? You know after a bad case of the flu you just feel wiped out and want to sleep a lot? That's me.

The placard question

I have had a somewhat long term debate with myself of whether I should get a handicapped parking placard. Some days finding a parking place and having to walk long ways - with full grocery carts, etc - get very tiresome and painful. RA and fibromyalgia can be a nasty combination. When one isn't hurting the other is.

Last year my primary care doctor told me I don't want to go down that route. I am not sure what she is thinking. Other than the fact that she is very healthy and in her 30s. I think my rheumatologist would be much more likely to sign the form if I asked her. She is more aware of my mobility issues.

I have already taken the safest parking space at work - this is a perk when you work for a small company and every uses the same space every day. When one woman retired a couple of years ago, it only took me one icy day to decide I was taking her space right next to the front door. Its also helpful when I leave my phone or lunch in the car.

But its not the same at the grocery store or the doctor's office where I park in the giant garage and go up to the top to park near the elevators/stairs. The thing about the placard is you don't need to use it if you don't want. If I'm having a good day, maybe I'll take a distant space. But there are times when my husband leaves me at the door to go park the car and then get the car.

Most days I am okay but some days I am not. I am tired and just need to finish what I need and get home and lie down. Those are the days where a placard would be helpful. Sometimes I look at people who park in the handicapped spaces with a tinge of jealousy. Other days I enjoy the walk from the far recesses. Some people look handicapped - canes, limps, oxygen, etc - and some don't - like me. Not all handicaps are visible.

And then there is this woman in Australia who got yelled at by some crabby man because she had a placard and didn't look handicapped. Just because you don't look like you need the space doesn't mean you don't need it. Appearances can be deceiving.

And am I too young to  need one of those damn placards? Would it put me in the old fart category already? I may have the medical records of a 90 year old.

Its Not a Contest

Its not a contest to see who has the biggest list of ailments or who is the healthiest. A few weeks ago, while at the gym, I met a woman who was in the breast cancer club - we recognized our lymphedema sleeves, which leads to conversations, how long has it been (15 years or so for her). We chatted a bit about the benefits of our gym for dilapidated people. She said she has Parkinsons and they worked very well with her. I said they had been so good with me working through my RA and fibromyalgia and her reply was 'okay, you win'.

I thought to myself, no it isn't a contest and I don't think I wanted her diagnosis either. She had tremors visibly. 

Why did she think it was a contest? I have no idea. Maybe then she could think of me as someone in worse shape so she could feel better about herself? I have no idea.

Swimming along

With all my physical ailments, numerous well intentioned people have suggested swimming and water aerobics for me. My response is 'um, no'. I don't like swimming. In fact I hate swimming. I hate swimming laps to be specific.

I think this goes back to my childhood (as all strong feelings do). I grew up in a neighborhood with a community swimming pool. Once you passed the swimming test (2 laps, tread water for one minute I think) and were over the ripe old age of 8 or so, you could go to the pool unsupervised by parents all day. (This was the 1960s where children went outside all day long without a leash.)

We would ride our bikes (past the big bad scary dog who would chase us) every day the sun shined to swim and hangout at the pool all day long. We played Marco Polo, dared each other to go down the slide head first, learned water ballet, and generally had fun. We would leave after the ice cream truck came around 3pm and ride our bikes home.

At some point, we were all encouraged to join the swim team. They were encouraging us to channel our energy into lap swimming. We started to swim laps every day, over and over again. The thrill of the pool quickly turned into the boredom of lap swimming. We were then too old to play Marco Polo all day and had all gone down the slide headfirst on our backs. And they made us swim laps.

At summer camp, I even passed junior lifesaving. I learned more water ballet. But they didn't make us swim laps.

To this day,  I don't like swimming laps. I am not a water aerobics person. That would mean being there at a specific time which I can never do because my schedule varies so much.

I do like floating around a nice warm lake or ocean with a little float. I can swim if I want to but rarely feel the urge. And now there is a new study that says it doesn't matter for fibromyalgia if you do land or water based activities. I can just apply that to all my other ailments and can happily avoid swimming laps.

Treating Chronic Pain with Exercise

It seems a bit contradictory but exercise helps relieve chronic pain. Its one thing if you have an injury that needs to heal but then they send you to physical therapy to regain range of motion and start movement. It may be include some ouching but it means it is helping as well.

I have fibromyalgia and RA (in case you  haven't figured it out yet) and I go to the gym three times a week. I am one of the 40% or so (or whatever that low number is) of Americans who get the recommended amount of exercise weekly. At the gym, I do 45-60 minutes of cardio followed by strengthening exercises and weights (yup, I can lift the giant 1 lb weights with ease).

Some days are a little harder than others. Yesterday the muscle on the top of my right thigh was very unhappy with some of what I was doing and my left hip told me how I could not do some exercises. But I did finish 95% of my workout which is just fine.

Exercise does make me feel better. Some of my doctors are impressed with the range of motion I have in my shoulders and hips because of my ailments. Exercise and stretching has allowed me to retain this. It has been suggested I try swimming. But since I hate swimming laps, that has not happened.

However there are always overachievers. I am not an overachiever regarding exercise these days. Katie Pumphrey is an overachiever. She swims to help with her fibromyalgia. But if that wasn't enough, she is training to swim the English Channel. No I am not kidding. The English Channel is not what we call an easy swim. To put it in context:

"Fewer people (1,429) have crossed the channel solo than have climbed Mount Everest (more than 4,000), and only 446 of the swimmers have been women. Eight people have died trying since Matthew Webb first accomplished the feat, in 1875 — though the success rate, which was tiny in the early 1900s, has risen sharply in recent years.

If all goes well, Pumphrey will enter the water in Dover, England, on Aug. 8 or 9, 2015, and emerge in Cap Gris Nez, France. The distance is 21 miles, but the shifting tides guarantee that few swim directly across. In July 2010, 56-year-old Jackie Cobell reached Calais, France, after swimming 64 miles in nearly 29 hours."

This will be a feat for the record books as far as I am concerned. So to the non-exercisers out there, I just say aim high and start moving. For those with pain, remember every journey starts with a single step.