Tips for the dentist

Adrienne Dellwoo posted about going to the dentist with ME or Fibro. For me, the worst part is how sore my muscles get from sitting still for so long.  But I have some tips that help:

1. Definitely start with communication. Tell them you need them to be as gentle as possible with scraping, probing, etc.

2. Ask for a bite block to hold your mouth open rather than you trying to do it yourself. Take frequent breaks to have them remove it and let your jaws rest.

3. Bring a seat cushion and a neck pillow.

4. Take any of your as-needed pain medication before you go.

5. Plan for several days of rest afterwards.

6. Practice preventative dental care to try and avoid problems that will require extra dental work. If any of your meds cause a dry mouth, this puts you at extra risk for tooth decay, so be aware!

Me? Exercise?

When I saw the pain specialist, Dr Purple Hair, last month, she diagnosed me with fibromyalgia. She also said that one of the best therapies for fibro pain is exercise. Happily, she is aware that this is difficult. "When I tell patients that exercise will help, their reaction is 'Are you fucking kidding me?'" Reason number one that I like Dr Purple Hair: Appropriate use of expletives.

Since we're doing medication changes as well, I said I wanted to wait until the meds were settled before starting any sort of physical therapy. I also have some concerns about my heart, due to my high resting heart rate, and I want to make sure anything I do physically is safe for me.

However, I did think of something that I could do in the meantime - or rather, that could be done to me. My husband often offers me massages to help with the pain, but it occurred to me that a different sort of bodywork might help with the pain as well as help condition the muscles. So about a week or two ago, he started moving my legs for me. Rotate the ankle around, raise the leg, bend the knee, and so on. Basically the same sort of movements I'd do myself as part of a warmup for a traditional exercise routine, but in this case, he's supplying most of the energy to do the work.

I think it's been good for me, and at least doesn't seem to increase my fatigue any. He's done just a bit with my shoulders and arms, but since my shoulders remain my weakest joint, he doesn't do them every day.

I think the name for this is "facilitated stretching". I'll be telling Dr Purple Hair about it at my next appointment (likely in January) and we'll see if it can be incorporated into the exercise plans that she'll be recommending.

Day 18: Advice from a patient to a spouse-carer

Day 18 – Sunday, Nov. 18
“I want to change THIS about healthcare…”
OR
Write about your advice for someone caring for a patient with your condition

To the spouse who cares for a patient with M.E. or Fibromyalgia:

Be gentle.

Touch can be healing. Massage is often the best thing for pain. Sometimes just laying your hands on can help.

Except when we're so over-sensitized that they can't bear to be touched. Try not to feel rejected when that happens. It isn't personal.

Be willing to turn off the tv and radio and everything else and just keep a quiet house on the bad days.

Let your spouse comfort and care for you when they can. We still want to feel like a genuine partner in marriage.

Sometimes it's just easier if you make the decisions, like going ahead and running the bath rather than asking 'Would a bath help?' Sometimes it's infuriating to be denied our own choices. Every patient will have a different threshold for this, so you'll have to learn where that point is for yours.

Don't be surprised when we suddenly goes from seemingly fine to crashing. You can try and learn the patterns and try to catch it in advance, but sometimes there's just nothing you can do.

Find out where the medication is and how to administer it. Know how to reach the doctors. Be prepared for the Really Bad Crash before it happens.

Don't blame yourself.

You'll have to be creative as a couple to keep the romance and sex alive. There are lots of ways to give one another pleasure besides traditional intercourse. Explore them to find what works for you.

When pushing a wheelchair, always make sure the brakes are on before your patient gets in or out, or before you let go of the handles. Doubly so if there's a slope.

Communication is vital. Marriage and caring is a difficult combination. Don't let the caring destroy the marriage.

Talk slowly. Wait for answers. It takes us longer to think than it used to. Don't try and discuss serious things on a bad day or when there's limited time.

Look for joy and appreciate it whenever it appears.

Care for yourself too. Remember the airline instruction about putting your own oxygen mask on before assisting others.

Be gentle. I can't stress this enough. Not just with us, but with yourself, and with the world.

#NHBPM

Day 15: Show Me Your Teeth

Day 15 – Thursday, Nov. 15
Why healthcare companies (or healthcare professionals) should use social media
OR
Nominate someone for a Health Activist Award bit.ly/haawards12 & write a post about why you nominated them!

I don't know any Health Activists, and I don't really have any opinions about healthcare companies and social media. So I went back to a previous day and chose one of the prompts I didn't use on Day 2:  

Write about the weirdest thing about your health

It's my teeth. 

Sometimes they hurt, in a way that makes me think 'Oh no, I really need to go to the dentist.' Then a few days later, they'd be fine. Later, weeks later maybe, they'd hurt again. This went on for years before I finally made the connection. My teeth were my equivalent of the migraine aura.

Now I know when my teeth start to hurt, to reach for the rizatriptan rather than looking for the dentist's phone number. It's a useful symptom, but it's pretty weird.

#NHBPM

Day 14: Playing the Card

Don't we all wish...

Day 14 – Wednesday, Nov. 14

“My life is a reality show.” Write characters, plots, the set, and why people should watch

OR

Advice for dealing with negative feedback in your community

I sometimes watch reality shows, but I would never ever be on one. Just... ugh. No way. And I've never really had negative feedback from my blog. So I don't have anything to say on that. 

I looked over the bonus prompts and the unpicked prompts from previous days, and though I could think of things to say on many of them, I knew I couldn't actually turn any of them into a post because of how much I hurt today and how brain fogged I am. So in the absence of the card above, which I'd much rather be playing, I'll play this one instead:

I hope I feel better tomorrow.

#NHBPM

Day 13: So today I went to the Pain Clinic

Day 13 – Tuesday, Nov. 13
Book report. What’s your favorite book and how can you tie it to your health or life?
OR
Write about something taboo

I hadn't decided which topic to pick today, but then I went to my first assessment at the Pain Clinic and I can't really think about anything but that.

The Pain Clinic

 First of all, going to the Pain Clinic hurts! For someone who is not used to sitting up for longer than 20 minutes at a time, having to sit up for a 20 minute taxi ride, half an hour in the waiting room, 45 minutes for an appointment, then an hour getting home... well, it was Not Pleasant. My tailbone hurts so much, and I know I'm going to have a crash tomorrow and possibly for several days.

However, I got important information today that I needed, which is that I have Fibromyalgia in addition to M.E. The pain doctor was a wonderful woman with white hair that had purple streaks in it, so I will call her Dr Purple. She didn't talk down to me, took me seriously, and actually explained things chemically that were going on with my medications. She then had me stand up (with my husband spotting me in case I lost my balance) and did the tender point test for Fibromyalgia. 

Later, he asked me how it felt, because he could see that some of them were very obviously painful. The closest description I could give was "Kind of like that sort of blinding pain feeling you get when you stub your toe, and it just sort of sweeps pain through your whole body and you feel like your vision just kind of goes all white for a second. Only it wasn't a sharp sort of pain like that pain, and it didn't keep hurting once she released the pressure." That's not a very good description. Especially since now I'm feeling aching in those tender points now, a few hours later.

How does it feel having a new diagnosis? A little sad. A little relieved - I don't think doctors understand how much it means to patients to have an actual, reliable diagnosis, even if the diagnosis is for something unpleasant and incurable. But mostly no different. I talked to my former GP about Fibromyalgia a few years ago when pain became one of my regular symptoms, and his response was "You probably have it, but there's no point in making an official diagnosis, because there's nothing we can do for it anyway." So I'm not at all surprised by it (though I am surprised by the intensity in the tender point reaction). What does surprise me is that apparently there are medications that can treat Fibromyalgia, so my old GP was either full of shit or too lazy to keep up with changes in medical treatments. He has since retired, so possibly the latter. 

The medications I'm already on are closely related to the drugs most often prescribed for Fibro pain, but the dosages are all wrong. I'm going to start with slowly changing doses or possibly changing the medications themselves to their chemical cousins, but only one change at a time. There are also non-medical treatment possibilities, but the appointment was running over (we were in there for 45 minutes, which is extremely generous for an NHS appointment!) so she didn't really go into those, and besides, one change at a time.

Next step is that she will write everything up clearly, with the diagnosis and her recommendations, and mail a copy both to me and my regular GP. Then my GP will start adjusting my medication dosages. I'll continue to see the Pain Clinic for more adjustments and recommendations over time.

And so we'll see what happens.

#NHBPM

Day 11: Anatomy of an M.E. Patient

Day 11 – Sunday, Nov. 11
Anatomy Post. Re-label an anatomy picture with new names/descriptions for your body parts.
OR
Write about your favorite thing that is not health-related but likely improves your life

The second topic would be a simple answer: The Internet. So I'll do the first one instead.

#NHBPM

Day 6: News of the Weird

KENT, UK - A strange hominid creature that scientists have dubbed "Average Foot" has been spotted by a lone witness in a small flat near the sea in southeast England.

"It didn't look human!" the witness reported. "It had hair sticking up everywhere, and the noises it made were terrible. It seemed to have encountered humans before at some point, because it had some clothing on inside out."

It was reported that the creature seemed to be making attempts to communicate, but only in grunts and groans. Our witness thought there might have been a request for tea, so he went into the kitchen to put the kettle on.

"It seemed to be in pain. It was awful. It moved so clumsily. I think it may have gone to the loo, because I heard noises in there. But then when I came back with the tea, it was back in bed and fast asleep. I couldn't bear to disturb it."

One foot was left sticking out from under the duvet, leading the witness to dub the creature "Average Foot".

#NHBPM

Day 6 – Tuesday, Nov. 6
News-style post
OR
Write about a time you had to take the high road

Tramadol

My last GP visit, a few weeks ago, I asked for some help with pain relief. He has said I can take up to 8 paracetamol (aka Tylenol) a day with no problems, but I worry about liver damage. So I've been limiting it to 6, and there are days when I need something more. So he prescribed Tramadol, a mild opioid.

On the one hand, I feel noticeably better when I take it. In addition to pain relief, it also acts on serotonin and norepinephrine, so there's probably several things going into the 'feeling better' result I'm getting.

On the other hand, it depresses the libido and inhibits orgasm.

Since I've been ill, I've found it difficult to make decisions. My mind just keeps going round and round and whatever part of it used to jump in and actually choose seems to be no longer working. I don't want my sex life broken, but on days when I was in a lot of pain, I probably wasn't in the mood for sex anyway. But if it makes me feel better, I might want to take it regularly. But sex makes me feel better too. Round and round and round my brain goes.

Not sure where this one will stop. I see my GP again on Sep 1, but I think I'll wait till the visit after that to raise the issue, having given the drug more time in case it's one of those things where the side effect goes away when you're used to it.