I'm Figuring it Out

Gradually, I'm coming to terms with how this works.

• I have fibromyalgia, which causes generalized pain and fatigue. To alleviate that, I take Lyrica at the dosage level that we have identified that reduces the pain to almost nil and significantly eliminates the fatigue.
• I also have bursitis in both hips. My right hip area emits heat to the touch due to the ever-present inflammation from the bursitis that has remained unsuccessfully treated for the past 30 years. To alleviate the pain in my hips, I take another pain med to a dosage that keeps me essentially pain free most of the time -- until I engage in physically demanding activity that involves the right hip joint.

Have you ever thought about what activities you engage in throughout your day that DOES NOT involve the hip joint? Think about it sometime. Or, as you go about your day, try NOT using your hips.

So, now I know why I continue to have less than stellar success with these pain meds. I expect them to relieve my pain even if I engage in day-to-day activity. Is that asking too much? I guess the answer is, because I am soooooooo much more comfortable now than I was prior to starting these new pain meds, I should accept my new status because any amount of time spent pain free is a bonus. Just a matter of mindset, I guess.

I'm Trying, Really I Am !

Believe it or not, I really am trying to be positive about this but it's difficult.

During the course of this past week, I went into Ottawa on two different days, Tuesday and again on Thursday.

• On Tuesday, I had a physio appointment and then we joined my daughter and her family at a local restaurant for my grandson's birthday celebration. Then we came home via a few stops (naturally, if we go into town, there must be errands). I managed 15 minutes on the exercise bicycle in the early evening.
• On Wednesday, I had my "rest day" which is so necessary for me after a trip to Ottawa.
• On Thursday, we again had to go into Ottawa for John's follow-up appointment for his hearing aids (now that was an appointment worth keeping!) I had had a massage prior to making that trip. By the time we got home, I couldn't convince my legs to co-operate with me -- they were like lead weights. I decided to forego the exercise bicycle since my physiotherapist has impressed upon me the importance of not "aggravating" my hips and countering the benefits of the new meds. She said I can do the bicycle as long as there is no pain.
• Yesterday, Friday, my legs continued to feel like lead weights and they were extremely painful. Plus, my "get up and go" just "got up and went" -- I was lethargic beyond measure. I am truly hoping that the lethargy was due to the heat and not a result of this medication.
• Today, I awoke feeling quite rested and my legs felt more normal. I'm back to the "I have no pain" status that I have been enjoying of late when I am at home. So I made John his favourite "big breakfast" which I do most Saturdays and it was a pleasure to be able to do so without struggling through excruciating pain.

So early this afternoon, I thought I would get back to the exercise bicycle. I lasted all of three minutes -- the pain in both hips became absolutely unbearable and I remembered my physiotherapist cautioning me about pushing the envelope. She told me that it is one thing to keep going when you are tired; it is quite another to keep going through pain. She said that if you still have serious pain a half hour after you stop the exercise, you shouldn't be doing that exercise. I continue to have pain all night long if my hips get aggravated too much! In the case of trips into Ottawa, I continue to have pain for 24-36 hours, but there are some exercises you simply cannot eliminate.

Obviously, the new medication is affording me significant pain relief. I am now essentially pain free when I am at home (other than when I am in recovery mode from an outing). The challenge becomes when I have to leave my home since getting to/from Ottawa is hard on me and shopping is always a pain in the ass (OK in the hips). I'm learning how to deal with restaurants (my ever present personal cushion sure makes seating a lot more comfortable!) In a perfect world, I guess the medical community would find something that would give me relief while I'm at home and would continue to work in those circumstances when I leave my home.

I'm having difficulty getting used to my body's new clock though. I always was an "up and at 'em" kind of person but of late, I seem to be a real slow starter -- very foreign for me. Has to be the medication, right? Can medication do that to someone? Or is that just a natural progression of age? I must admit, when I was retiring a few years ago, I do recall mentioning that I was in training for slow starts in the mornings. So perhaps I've just learned how to do it.

Progress is sooooooooo slow!!!!!!

Can you tell I'm somewhat of an impatient person? I want results now!

• I no longer have pain as I sit around my home doing nothing.
• I no longer have pain as I go about my "chores" within my home, such as doing laundry, or cooking a meal, or baking something scrumptious just because ...
• I no longer have pain as a result of preparing for and then having a small dinner party.
• I no longer have pain when I go out for an evening with my husband.

In a nutshell, I no longer have pain doing a lot of the stuff that used to cause me great bouts of agony. What is my complaint, you ask?

I still have serious pain under any of the above conditions if I walk too much. The problem is, I can't define "too much" -- I don't know when the threshold is reached: some days it's 15 minutes; others it's only five minutes. All I know is, I still cannot walk any great distance without inducing great pain in my hips -- especially the right hip. So my question is, if this stuff is working so well to alleviate my pain, why can't it alleviate ALL my pain?

These new meds are obviously working, but I want miracles. After all, I've suffered with this nonsense quite long enough thank you very much. Now that there has been offered up a hint of relief that is actually working, I want total and complete relief. Isn't that just a natural human response?

I DID IT, I DID IT!

I did 15 minutes on the exercise bicycle today! Yippeee!!! I'm back on track. But this time, I won't do "too much too soon" as my physiotherapist describes the syndrome. I have a habit of pushing too hard, apparently.

It is abundantly clear that I can't manage 15 minutes one day and 10 the next, so I have had to scale back to 15 minutes every other day. I will have to settle for that. Especially since it took me three attempts to get back up to 15 minutes again!

I'm not sure when I will start the walking program on the alternate day -- my regular physiotherapist is back next week so I will discuss that with her.

Today I went into Ottawa for a physio session and ran some errands before returning home. My energy level still isn't great but I'm thinking I need to get into better shape -- condition myself into "doing" things, if you will. I mean, after all, of course it hurts me to walk if I don't walk, right?

Progress, Perhaps?

So, we are, perhaps, making progress.

The past few nights have been quite promising, with limited interruptions and my going right back to sleep with little difficulty.

I put my body to quite a test on Saturday and seemed to have passed so I guess the new meds are working because I never could have endured the kind of day I had this past weekened, believe me. And I am none the worse for wear so I have to declare the new meds successful.

The ultimate test, of course, will be when I subject myself to a lot of walking -- that is something I haven't yet tried.

Today, I attempted to do 15 minutes on the exercise bicycle again. Only made it to ten minutes when I had stop. But that's better than nothing; and at least I'm still trying. My physiotherapist will be sorry to hear of my setback but that's what happens when one goes away for a holiday -- the whole world falls apart!

I'm Getting Really Discouraged!

OK, some may say it's early days yet BUT I like fast results, what can I say?

What am I getting discouraged about you ask?

Well, having increased the pain med dosage last Thursday night, I had hoped for increased pain relief. Didn't happen. In fact yesterday -- day four on the higher dose -- was a particularly difficult day. I hadn't slept well the night before so my energy level was low. I didn't do much of anything but I did do my stretches. When I tried to do my 15 minutes on the exercise bicycle, all I could manage was six minutes -- six lousy minutes! The pain in my right hip and leg was absolutely unbearable and my physiotherapist has always told me that if pain ensues, I am to stop. So I stopped. By the way, my bicycle regimen has been halted at 15 minutes every other day until I can discuss the program further with my physiotherapist.

Now this experience suggested that the higher dose was not very effective so I decided to follow my doctor's instructions to further increase it if necessary (seemed to me like it was necessary). So I doubled the bedtime dosage last night.

I didn't have a very good night last night. I had difficulty getting to sleep; I woke twice (just as I usually do) and had difficulty getting back to sleep both times. When I woke for the day I felt very groggy. When I actually got up and mobile for the day, my right leg was behaving as though I had a pinched nerve -- that's a new phenomenon! I'm attempting to stretch it out but it is very painful. Meanwhile, my head is in an almost constant mildly spinning state. Sure hope that settles down.

As of today, I am taking double the dose of the new pain med that I was taking two days ago. I will allow a few more days' testing before passing judgement. But if things don't improve, I think I might be pulling the plug on this drug as well.

My Apologies to my Fanbase ...

I must apologize for my failure to post. Apparently I have difficulty visiting my computer on a daily basis. Well, that's not really true -- I do check my e-mail each morning; and I check my bank account(s) each morning. Never miss. I just don't always have time to visit this site every morning. And then, once I get home from a day of activity I am too pooped to 'pute. So please forgive me; I promise I will try to do better.

Anyway, I did my 15 minutes on the exercise bicycle yesterday without wearing my TENs machine. Wow, was that ever a mistake; I paid the price big time let me tell you. By late afternoon, I was seriously dragging bottom. I couldn't walk the length of my living room without great difficulty; my legs just wouldn't work. My jet-massage tub was an especially welcome treat last night.

Today, I had to go back into Ottawa for another physiotherapy appointment and it was quite a bit earlier than usual so my morning routine was a little disrupted. John came with me because we had to go back to the hearing aid place. One of his brand new hearing aids is broken and had to be sent back for repair -- what a pain in the butt! We stopped in Carleton Place on our way home to do a few errands. By the time I was half way through the store, my leg was in agony -- and this was after a physio session! So I'm guessing that I still haven't hit the proper dosage of this new pain med.

Before coming home, we decided it would be prudent to check out a new restaurant in the area so we stopped and had lunch. The place passed -- good food at reasonable prices. Good to know there is a place we like nearby for when neither of us feels like putting a meal together!

More Changes Again

Well, I saw my doctor yesterday and he's made further changes to my medication again. He feels that I can get more pain relief at night than I have been getting so as of yesterday, I am taking slightly more at bedtime than I take in the morning. If this doesn't work, I am to double both doses. Time will tell.

Today was my first day waking up after having taken the higher dose at bedtime, so I can't really assess its efficacy yet. I'll reserve judgement for a few days. I had crashed really early last night because I for some reason was dog tired again once I got home from the city. Perhaps that will be par for the course -- I'll have to start watching for a pattern.

I managed to do my 15 minutes on the exercise bicycle today, after having missed the two previous days. Interestingly, I actually did miss the two previous days. Surprising how quickly one can get used to a routine, isn't it?

This afternoon, we went back into Ottawa so John could visit a camera store downtown before we went to pick up his new hearing aids. He's fairly sure one of them is not working right so it might have to go back, which is always a pain in the you-know-what.

It seems to have been a rather busy week, with several trips to Ottawa, or at least a lot of time spent in Ottawa. I think I'll spend the next couple of days at home, doing very little. Just resting up. I need to recoup; life has been too busy for me this past little while.

Another Difficult Night Again

Last night was difficult and long again. I don't know what the scoop is here -- one good night; one bad maybe? Beats me. All I know is once again, I was awake every hour or so, trying to find a comfortable place to put my legs. And my hips were burning! I don't recall having done anything too onerous yesterday to account for the difficulty.

In any event, when I woke this morning I had, and continue to have, a very stiff neck. So obviously, I slept in a weird position. I was also a lot stiffer and sorer than I have been the past few mornings; that tells me that I didn't sleep very well last night. I'm quite drowsy today too.

Oh well, in spite of it all, I still managed to do my 10 minutes on the bicycle. I absolutely don't want to suffer a setback on my exercise program.

I will not be posting tomorrow because I have to leave here by 9:00am to go into Ottawa for a couple of appointments. I will then be having lunch with a good friend whom I haven't seen in over ten years. Then I'm staying overnight at my daughter's place again (woo hoo I get to see my favourite boy again) in order to make my early morning appointment with my doctor on Thursday.

A New Beginning?

A new month; a new start.

I've started the increased dosage of the new pain med -- with significant improvement overall. Quite remarkable really. It would seem I'm tolerating the higher dose much better than I was the lower dose.

Our dinner party yesterday was a hit; I found it long and tiring but that's par for the course. I enjoyed the day nevertheless; it's always nice to see good friends and family. The food was good (so I was told) and everyone seemed to enjoy themselves. My problem is, once there are eight people in the room, that's just too many people -- you can't really visit with anyone. I guess I'm just a one-on-one kind of gal!

I did my 15 minutes on the bicycle this morning -- wow was that a struggle! But I persevered and I did it. Tomorrow I'll do 10 minutes. In about two weeks' time, I'll introduce walking on the short day and see how that goes.