2livesimple’s Weblog

I haven’t posted in some time.  It is interesting to record your thoughts on a blog, yet when you don’t have the responses that you hoped to, a dialogue amongst others who are either facing the same issues, or in the case of reducing materialism and simplifying, a common interest, you tend to stop.  Or at least I did.

I let myself fall off the blog wagon.

I’m currently taking Lyrica, and just in the beginning build up stage, and hoping it will work.  I’m not sure at this point if it is really doing anything, but told it takes time.

I’m still doing acupuncture treatments, and feel it is helping.  Certainly not feeling great yet, but definitely can tell it is doing something.

Physical therapy has stopped.  It seemed to be a fine line between what would help me, and what would push me over the edge.

I’m back at work (part-time building up hours), and it may be the best thing for me.

It is so much better to feel a sense of a schedule, and not the endless days ahead of me.

For now, until anyone asks questions, or responds with their thoughts to Fibromyalgia, I’m going to focus on a simple life, and getting rid of all the excess stuff in our house.

My doctor has encouraged me to be more active.  He says that if I simply sit around all the time resting, that I will likely just get worse, and worse.

I asked him about yardwork, and he thought it would be a good idea, as long as I am not doing anything overly strenuous.  The idea is to get some movement going, and a little exercise.

Well, I did just that today, a little weeding along the side of our house.  Not a huge area, I sat down on the ground (so I wouldn’t have to keep bending over) and worked at a slow pace.

Big mistake!!!!!  I have now had my wife apply a couple Lidoderm patches, and hope the pain will subside.  I was aware of some discomfort while I was weeding, but did not feel overwhelming, just the same daily pain.  The nice part, was that I was able to somewhat occupy my mind for awhile, and from time to time got lost in the weeding.

As I type this, my back is feeling better with the patches, and I will need to stop typing shortly as my right hand and arm are hurting pretty badly.  Should be interesting to see how I do tomorrow.  Maybe in a few days I will try again, but keep the time shorter (maybe by half), and see how it goes.

I think this was the perfect example of what I have read - don’t overdo it on one of your good days!

Still trying to learn my limits.

I had another doctor’s appointment on Friday.  There is good, and there is bad.

Good is sometimes a matter of perspective, but then isn’t everything.

I will stop my physical therapy sessions.  As my doctor put it, the return is really not there.  Sometimes I am thinking it is helping, and other times I think it is hurting.  However, I will no longer be spending 2 to 3 co-pays each week, and all of the medical expenses have been adding up.

I will continue with acupuncture as I really don’t have an absolute opinion on it.

I think what is interesting in this whole process is that something doesn’t work for everybody.  Think of prescription drugs, maybe specifically antibiotics, and penicillin in particular.  I am allergic to penicillin, and have been told by a doctor that if I took it again, it could kill me.  I don’t specifically know about that, but it does give me horrible side effects.  It may help for most people, but there will always be those that it does not.

How can anything else be different?  For anybody who swears by a particular mode of treatment or a particular medication, there will always be those that it hurts, or does nothing for them.

I am still hopeful that acupuncture will help, and in some ways I am thinking it may be, but nothing conclusive yet for me.

The down side is that we have tried so many things, that we are running out of ideas.  My next follow up appointment will not be for another month, and I am currently still unable to work.

He has told me to really think about where my future is.  He is thinking that even when I am ready to return to work, that I will probably only be able to work part-time.  What will my employer feel about this?  If I can’t return to my job, what will I do?

Luckily, my wife and I had already decided to downsize our home, and try to live more simple.  How much will I be able to contribute to us?  Am I simply dead weight?  How do couples manage when one of them are so limited?

I would say that today is a day of depression.  I wish to be able to say I am getting better each day, no matter how little the improvement is.  Instead, it is the see-sawing of the pain that gets to me.  A good day for me right now is when the pain is simply not exaggerated.  I do have better days, they are just too few, and often are followed by a worse day.

Sometimes, I am not sure if I am working to get better, or just trying to get used to the pain.  I have always had pain and discomfort, but just not at this level, and for this length of time.

My last two physical therapy days have been an example.  Last week Wednesday we did a very light workout, and I had hell to pay particularly in my neck (and a hideous headache).  Yesterday we did an even lighter workout, and today I am not having additional pain that I would attribute to the workout.

This seems to be what we seek for me at this time.  What can I do without increasing the pain.  Sometimes I can feel that I have pushed over the line immediately, and other times it may not be until later in the day, or even the next day.

On a good day, I have to tell myself not to behave as if it is a good day.  To make sure that I don’t do too much, only to have my next day be worse than usual.  Often this is the case for me as I am still trying to figure out what a normal day for me should be.

Acupuncture treatment # 4 is later today, and maybe I will be able to say whether it is truly helping or not some day soon.  I’m still hopeful most days!

I have not wanted to post daily on my Fibro, as many days are the same.  So will be only posting as treatments progress, and something new comes up.

Here’s the latest …..

Let me go back to Wednesday.  I had a physical therapy appointment.  As we had pushed me to more exercises, we reached a point where I was having more pain, so we retreated to simply using the heat packs and e-stem (sp?).  When I would do the exercises, I would have a very bad night, and the next day would be horrible pain.

My doctor had talked to me about the need to try to move more, to do more, but try to find a balance and discover my current limits.  So, I said why don’t we try to get back into the exercises, but try to take it easy.

She did just that, and while very tiring, I thought we hadn’t done enough to make me feel worse than I already was.  I believe I was wrong.  I had a horrible night of pain (the worst in the back of my neck, and upper shoulders).  I ended up sleeping for 12-13 hours that night (I am amazed that I slept that long straight).  When I woke up, the pain was worse, my back lit up in pain, and I had a headache.

I was very afraid that I wouldn’t make it to my acupuncture appointment, but just tried to rest and lessen the pain as much as I could with advil and a heating pad.  The headache grew worse, and I was entering into migraine territory when it came time to go to my appointment.

This time he treated me with needles in my back (the first time, 10+ needles), and then face up with needles at my wrist and foot.

This is the first time out of 3 treatments that I wasn’t left with a peaceful feeling, but I did feel better.  My headache was fading.  My back and neck still hurt very badly, but at least they felt a little better.

Now it is the day after, and I am having a decent day.  I’m very tired, but no headache.  My back and neck still hurt, but still a bit better than yesterday.  I am still hopeful that it is helping, but must admit that I was disappointed that I didn’t have that session full of interesting sensations that he said many had on their 3rd treatment.

There is always next week!

I’m being encouraged to try swimming, a chiropractor, a body talk treatment, etc.

I would love to have you respond with what is working for you, and what hasn’t.  We are all somewhat different, and would love some ideas.

It is amazing how much is out there about Fibromyalgia, and yet there still seems to be a lack of information, and some disagreement.

It has been a few days since my second treatment. Not a whole lot to add at this time.

The second treatment was similar to the first, however, I did not have as much pain during the treatment. A couple of twitches, but nothing like the first one.

Again, it left me feeling very peaceful at the end of the treatment. I still have the pain in my body, but the evening after the treatment there was still a feeling of well being.

I did ask him about how long treatments can take before a noticeable improvement. He said it certainly does vary with each patient, however there is a general rule. For every year of illness you should expect a month of treatment.

I’m hoping this proves true for me. It has been under a year that my pains and discomforts have been more than I can handle (along with everything else life brings). I can trace back my poor health to my childhood, so I am also thinking I would continue treatments for a lengthy time as long as I am noticing improvements, and can afford the treatments.

In addition to the acupuncture, he has started me on pills that contain acid derived from castor oil. I really can’t say that I have any effects that I can notice at this time. They are meant to help with the phlegm in my body. He said that he can tell by looking at my tongue that I have too much phelgm, and that it would be affecting my joints as well.

On Friday I had a follow up with my primary care doctor.

I am now starting a new medication. A patch that numbs the area it is applied to, and it goes right in the middle of my back. His feeling is that if I can be more active, that will be the best thing for the fibromyalgia. However, with too much pain comes the difficulty of actively moving. So far, it really does make a difference. Not a complete lack of pain as there are also other areas of my body that hurt, but with the worst of my back pain numbed, it certainly has been an improvement so far. I will follow up with him in two more weeks. He is trying to get me to some degree of stability, with progressive improvement.

On Monday I am going to look into the YMCA for swimming. Both my physical therapist and my doctor feel that swimming and walking will be the best exercises for me.

I continue to just make it through each day, but still remain hopeful.

I have had some of my worst days since the first treatment I had, and cannot say that I’ve had a good day since.  Although it has only been 4 days since the first treatment.

I’m wondering if anybody knows if symptoms may at first seem worse when starting acupuncture.  This is definitely something I will have to ask him on my next visit this Thursday.

Particularly worse are my neck and feet.  The bottoms of my feet have been hurting more and more each day.  At moments I feel if it were any worse, that I would not be able to walk at all.

Does anybody have any of their own experiences they can share on this topic?

I just got back from an appointment with my doctor. What I was able to report was that I felt that things happened with the session, but couldn’t say I was any better. Of course, it was only the first appointment.

What I really wanted to find out from him was what would he truly expect me to get from acupuncture.

He believes that at some level it will help. This he felt very certain of.

Also, his experience with his patients has been that it has been very successful. Some patients he would describe the results as life changing.

I’m going to discontinue the Cymbalta. I have been taking it for 4 weeks now, and can’t say that I recognize any benefit from it. He feels that if it were going to help, that I would be able to recognize some change by now. The good news in stopping it is that I really don’t like having to take medication.

It’s afternoon, and my back still is in a lot of pain, and I now have a headache. Not a good day at all, but the hope remains.

I had my first acupuncture treatment yesterday. It is something that I have always wanted to experience, but just never got around to it. The pain I have had from fibromyalgia was just what it took to get me there.

My doctor has had a number of his fibromyalgia patients go to this acupuncturist with good results, so picking one out was simple for me.

Armed with my filled out questionnaire, I headed to my first appointment with both anxiety and excitement. People have told me it hurts, that is doesn’t hurt, that it helped, and that it didn’t help. When you are in enough pain, you just get to the point that you are thinking who cares. If there is even a possibility that this could help, then sign me up.

We started the appointment with a lot of questions. He was trying to get a picture of how my health has been, and how it progressed. When we were done, he pretty much said that my history is a classic example of the progression towards what is labeled as fibromyalgia, and that he felt it could easily be treated with success. That was great, because I loved how strong his attitude of success was. He could just have easily said that he could help me, and relieve the intensity, but that would be about it. There would still be a certain level of pain and discomfort. However, as I said, he was absolutely positive. He did say it wouldn’t be overnight (still need to get some idea from him how long he thinks it might take, but you can only ask so many questions in a single visit).

To give you an idea of what the actual treatment was (if like me you have never been before), I laid on a table (face up) wearing just my shorts. He then began to insert the needles. I actually thought he was just checking certain locations out, but when I asked him, he said he had already put a few needles in. It was completely painless for me on all the needles being put in. A few areas I really wasn’t certain if there was a needle there, or just where he touched to locate a spot.

Here’s where it got very interesting. He turned off the lights, and had some pleasant music playing lightly, and left the room to let the needles do their work. I would feel pain in areas that needles weren’t. The main pain I felt was in my forearms. The needles were in my hand and wrist. While the pain wasn’t pleasant, I can say that it was no worse than the pain I have been feeling every day. Also, it would come and go as I was lying there.

Then there was the twitching. I only had one spot that twitched numerous times, but many other spots that twitched once, maybe twice.

He came in to check on me a few times. And I’m guessing he was adjusting a couple needles (he at least touched a couple of them). Then it was over after I’m guessing a half hour.

He told me to get up slowly, and after putting on my shirt, sandals and glasses to meet him in the front.

I definitely felt a difference in my energy. I would say that I felt quite peaceful. The pains were still there in my body, but yet I felt something was different at the same time.

Now I have woken up the next day, and I’m posting these thoughts. Today I’m having one of my worse days. My back is particularly in pain. My feet are tender (this is something a bit different), and hurt when I stand and walk. My temples stand out as having a sensation that I can only describe as fullness. Kind of like when your temples are throbbing, but without the throbbing pulsing. Just very aware of them. No pain in the temples just the sensation that there they are, and I feel them. I feel very tired, yet there is still a peaceful feeling coming from somewhere (I’m thinking in my brain, my emotional being). Even though the pain is still with me.

I’m looking forward to continuing this treatment. He has told me that as the treatments continue the sensations will change.

I AM HOPEFUL!!!!!