The treatment is just not working

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Statgeek
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Date Joined Jul 2008
Total Posts : 1495
   Posted 11/6/2008 7:42 PM (GMT -7)   
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.  sad
Sue

Corrie_1
Regular Member


Date Joined Oct 2008
Total Posts : 185
   Posted 11/6/2008 8:10 PM (GMT -7)   
Have you discussed this with your doctor? Maybe they could find something that's not so hard on you... could traveling be causing your symptoms to flare?

Diagnosed with Fibro - October 2008


donnaeil
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Date Joined Jun 2006
Total Posts : 1156
   Posted 11/6/2008 8:15 PM (GMT -7)   
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

Statgeek
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Date Joined Jul 2008
Total Posts : 1495
   Posted 11/6/2008 10:19 PM (GMT -7)   

Yes, the travelling to and from doc is hard.  I said I would stop and rest during the trip.  I haven't tried that and need to start.  I also commute 2 hours a day to and from my job/school.  I am a grad student so job/school is the same place.  I work between 10 and 13 hours a day plus commute.  I think it is trial and error that is needed.

Maybe you can get a big heating pad at the medical supply.  I can only find 2 1/2 feet long - maybe put two together?

Sue


donnaeil
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Date Joined Jun 2006
Total Posts : 1156
   Posted 11/6/2008 10:41 PM (GMT -7)   
Hey, I am a grad student also.

Donnaeil

Corrie_1
Regular Member


Date Joined Oct 2008
Total Posts : 185
   Posted 11/6/2008 11:26 PM (GMT -7)   
:p I'm NOT a grad student... however I did attend a year of university.
 
I know right now with how my fibro is.... I can not work... I do not believe I could go to school full time either. I've pretty much had to put my life on hold since everything has got so bad. Maybe you could look into alternatives through the school to help you? When I was having problems when I attended school with health I talked to one of the school councillors and she helped get everything that I needed so I could concentrate on getting better.
 
I know if I work too hard one day it makes my next day even worst for pain. Right now I'm trying to pace myself to exercise and have been looking at the little things i can change in my life that will make a difference... and hopefully help.
 
The wierd thing I'm finding about fibro is how vast the different symptoms and severity can be for every single person who has it - but I guess all our bone and muscle structures are different so that might be logical.
 
Good luck!
 
 
Diagnosed with Fibro - October 2008


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 11/7/2008 5:53 AM (GMT -7)   
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 
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 11/7/2008 7:49 AM (GMT -7)   
Sue, I have not had any kind of injections in TRPs. The one thing I found with my neck is the more people that tried to help it the worse it got, it's now hands off territory, so maybe all that your doing to try to get better is aggravating your condition more. I get light massages when I can fit it in but that's it.
 
I had a few weeks with a lot of driving and that doesn't help us any but I live in a small town and everywhere I go is a drive. I'm surrounded by four larger cities that are all about the same distance from me and I'm not going to give up driving.
 
I have a muscle right now above my right hip kinda in the kidney area that is miserable, have no idea what I did or if I did anything. My rheumy gave me samples of a new rub last week to try on my hands, does nothing for my hands but it does seem to help the back some it is Voltaren Gel. You need a rx for it.
 
Some times I think we just have to ride it out and pray it gets better fast.
 
Donnaeil, being in a sauna doesn't make you nauseated??? I use to love hot baths but now if I get it too warm it makes me sick. I call it the Goldilocks syndrome. turn
 
Get better
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin


Statgeek
Veteran Member


Date Joined Jul 2008
Total Posts : 1495
   Posted 11/7/2008 4:26 PM (GMT -7)   

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


mamanan
Veteran Member


Date Joined Jun 2008
Total Posts : 846
   Posted 11/7/2008 6:32 PM (GMT -7)   
Sue, I'm so sorry you aren't gettign the relief you were expecting. I can understand how disappointed you must feel! I also think maybe the driving is hindering your progress? I only drive 1/2 hour to work, and by the time I get there, I'm hobbling liek an old lady. I really hope that you will find somethign that works for you soon. (((HUGS)))
Waiting for appointment with rheumy (March 2009) to get an official dx. waiting, waiting, waiting....
Taking malic acid/magnesium combo, what a life saver! and amitriptyline

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