The treatment is just not working

I am so discouraged.  I have such wonderful doctors that are trying to help me.  The pain doc injected $800 worth of botox into trigger points in my shoulders for myofacial pain syndrome and I am still in terrible pain.  The PT has given me exercises to help and I have been doing the stuff the biofeedback pt taught me and I am taking my meds and muscle relaxers and trying to wear the right shoes and nothing is working.  My back and hips and feet and ankles and shoulders and neck hurt almost all of the time.  I need a portable 6' long heating pad.  The appointments take a lot of time and I drive 2 1/2 hours round trip for my appts.  Driving hurts a lot. 

I was so happy to start treatment: that someone finally figured out my problem and was going to help me.  I expected to feel better.  I just don't know what to do.   I was in so much pain I couldn't even think clearly about statistics yesterday and I love statistics. 

Sue

You know, it takes a while to find out what works for us. I never had the guts to try the botox injections. Actually no one even suggested it.

The only thing that helped me was to take the Arthritis Foundation water exercise classes. Initially, I could only last one half hour but it helps.

In addition, I went to the local Y for the steam room, sauna and jacuzzi. Massages helped immensely but I could not afford to have them weekly.

Unfortunately, doctors are trying their darndest to not prescribe narcotics. I find they help me more than anything.

Shoes did not really help my hips, ankles and kness. I have several good pairs of them. I want a 6' long heating pad. Where do I buy one?

That drive to and from your medical practitioners is unhealthy. By the time you get home you are back to square one.

I am considering purchasing a portable sauna. The doctors and others do not have the solutions I need. this zanaflex is making me stupid. If I write anything strange forgive me. I am a near zombie even though I took the drug last night.

Donnaeil

Donnaeil

Hey, I am a grad student also.

Donnaeil

Fibromyalgia is fickle.  I know that I never know how I'm going to be for the day.  Sometimes things that never bothered me before or cause a flare now bother me.  Some days I feel much better than other days.  The problems is that there is no one thing that helps us.  We all try different things but still have pain.  I wish I had an answer for everyone and we could get rid of this lousy illness.

 

Yesterday I was packing up boxes to mail to my children.  I got them done and realized that I forgot to put some other things that needed to be sent in the box, so I had to reopen it and then retape it.  I then carried these four boxes out to the car.  I couldn't believe the pain I was in from doing something that simple...something I've done over and over throughout the years!  I could barely breathe, was moaning from pain but took my ibuprofen and Tylenol a little earlier than normal and tried to focus on something besides how I felt.  That seems to work for me the best.  It's like, if I think about how much pain I'm in, the muscles get sooo tight.  But, if I take my meds, and trust that they will work, and do something to take my mind off the pain, I seem to relax more and do feel better.  I hope I'm explaining this so you understand.  I also stay positive...don't dwell on the negatives in my life but look at the good thing in my life.  This relaxes me to and gives me peace with this illness.

I hope you find something that helps you.  You need to really accept this illness if you haven't already.  Remember, the doctors don't know what is causing this so they are just guessing, too.  The big thing is to keep moving.  Sitting for those hours in the car are not helping matters at all.  You need to stop and get out of the car and stretch.  Maybe print out the stretching exercises on Fibro 101, take them with you, and do some of those at traffic lights.  This could possibly help the situation.  Feel better.

Sherrine 

That's great Donaeil.  I've got awhile to go.  The many hats a grad student wears - research, teaching, taking classes.  It is a wonderful opportunity.

Maybe I expected to much from the tx. I expected to get better so fast - like zippity doo dah!  Oh well.  You are right, Sherrine.  Accept the illness.  I don't think I have accepted it.  How do you do that?  It is often an invisible illness.  If you have pain from doing something that wouldn't cause other people pain, do other people sometimes act if you are a big baby?  Family members can be the worst.

Ok.  I am going to print out the stretches and am going to stop and stretch when driving or computer work starts to cause pain.  That is a good idea. 

Another thing that I have used to help with depression and works is to remember to be grateful for the small things.  There is so much to be thankful for.  Focus does make a difference.

Btw: I have these great relaxation CDs by Brian Seaward.  The mountain lake meditation and progressive muscle relaxation and rainbow meditation are the best.  I recommend them to anyone.

Sue