update and some ramblings

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Date Joined Jun 2008
Total Posts : 846
   Posted 9/12/2008 10:17 AM (GMT -6)   
Hello everyone!  I hope this coming weekend sees you in good spirits and mostly free from pain.  yeah
My dh is the sweetest guy!  He has been worried about me, especially since my last visit with the doctors.  I felt I was being interrogated, and I didn't feel I had made any headway with them.  Dh had an appointment with our nurse practitioner, who is our primary care person.  He asked him what was going on with me, was he doing the referral to the rheumy, and why was my dose of amitriptyline not being increased.  He told the NP how I had felt at the last visit too, and my doubts that they were taking me seriously.  The NP wanted me to make another appointment to review my dosage.  It was my understanding that he was going to do this over the phone weekly, but he needs the doctor's approval to prescribe this med.  He also admitted that although he is sure I have fibro, the doctor doesn't seem to know much about it, or put much store in it.  He (the doctor) has a special interest in neurology, and I think that is why  he keeps wanting me to wait and get my reflexes tested all the time.  But the NP has put in the referral to the rheumy.  I thought they would have called sooner than this for an appointment, especially since I know that will be a few months wait time once I get the call.  But at least I feel more comfortable again with my NP, that he is on my side and doesn't think I'm faking.  My next appointment is October 10th, I couldn't get in any sooner.
In the meantime, my malic acid came in!!  woohoo!  I took only one pill for the last 3 days with no ill effects.  I'm going for 2 today and tomorrow, then I'll start the 3 on Sunday when I have 3 days off in a row.  I'm not too sure how I will take the second pill tomorrow when I work.  I normally eat a sandwich on my commute to work at 3:30pm, then I have a snack around 9ish when I can get a few bites in while I work, usually some fruit with cottage cheese.  How much food should I take with the supplement?  I'm also a little nervous about not being able to go to the bathroom.  Although my stomach has handled it well so far, I still do need to visit the facilities shortly after taking them, and that is something I can not do in public washrooms.  And at work I don't always have time to go when I do feel the urge either.  Oh, and even though I'm on such a small dose of amitriptyline, it has helped my facial pain so much!  I have some days where I hardly feel it, most days it's very mild and only sporatic, with some sharp stabbing pain.  It used to be moderate all day long, with longer bouts of stabbing pain, at times severe.  Coincidence?  All I know is I'm so relieved, and I'll stick with the med!
For you long time sufferers, how long did it take for you to accept this DD, and get used to your limitations, or how you felt from day to day?  I had 2 great days last weekend, where I had no fatigue!  and very little pain, just a mild ache in the legs!  I was seriously doubting myself, and what I had gone through for the last 5 months.  I knew my pain had been real, especially in the face, I knew my fatigue had been real.  But how could it suddenly go away?  Maybe there was another explanation?  Maybe I had been making too big a deal out of little aches and pains after all?  Why?  That's all we want, is answers, isn't it?  This DD changes so much, how do you get used to what happens to your body?  Then late on the second day, it hit me all over again like a ton of bricks, but different this time (maybe it was adobe for a change, lol tongue )  I got dizzy, had an icepick headache, the ache came back in the legs, numbness in my arms and hands, and something new.  I got worse travelling pain then I had felt before, not so much sharp, but it feels like I'm being punched, like a charleyhorse.  And my bad knee hurts too now.  On top of the regular ache in it, I now have what some of you have described as feelign as if the joint is being pulled apart.  It reminded me, last year, I had a few days where I felt that, but the pain was so severe that my knee would buckle when I put weight on it.  I had gone to emerg after a sleepless night, thinking I had tore it somehow, but it mysteriously went away when I go there!  Anyway, I'm now getting used to this sensation.  This travelling pain hurts more than the aching feeling, but I can handle it much better.  It's not constant, adn I find it relieving to say exactly what hurts.  That general achiness was getting me so down.  It isn't very high on a pain scale, but being constant... well, I guess you al know what I'm talking about.  So when this all started again, I went to lay down and had a good cry as I felt sorry for myself.  I know there are much worse things out there to be struck with, but I can't help it.  How do you prepare yourself for a life of pain?  And I realize that I am one of the lucky ones, my pain really isn't all that high.  But how can you face knowing you will hurt every single day of your life!?  I can't wait until I move on to the next step of healing- acceptance, and leave the anger and sadness behind.
So I was trying to figure out what had changed to make my symptoms do a turn around like this.  My fatigue and general achiness are much reduced, like I said.  Is it the amitriptyline?  I doubt it, as the dose is so low, and I think I would have noticed the change at the same time as my facial pain.  The kids going to school?  Even with dd only going part-time 3X/week, the boys aren't here to raise a ruckus.  I have monents of quiet time which I'm so enjoying.   The weather has turned cooler.  Even though we didn't have the warmest of summers, the heat did make me so fatigued, especially when I was out in the sun.  And I've started exercising and dieting again.  The exercise is hard, I feel the burn while I do it and for some time afterwards, but I know it is helping.  I alternate between light aerobics (I can only manage 20 minutes right now, but I'm hoping to build on that), standing pilates that really kill my legs, and ab pilates on the days I need to give my legs a break.  I've cut out lots of fat and limiting carbs again, and most importantly I'm drinking water again.  I've lost 2 pounds this week!  My diet was never horrible, I love my veggies and whole grains, but I think the extra fat does contribute to my fatigue.  I caved and had a chicken parm last night at work, and I felt so bloated and tired afterwards.
Sorry about the long post, and thank you if you managed to read through it!  Any advice on the above is greatly appreciated.  (((HUGS))) to all!  It took me a long time to write this, so I have to go tend to the kiddos now.  But I'll try to be back later and catch up on all the posts from this week.  I also notice there are many new names out there, so a quick welcome to all the newbies! turn
oops I forgot another question:  Do you see after images more than you used to before fibro?  My eyes have gone a little wonky since this began.  It started with floaters, then halos around lights (more like auras really), trouble focusing, and now I only have to look at something for a second or two to have the after image burned in.  TV is interesting now for sure!  (And yes Sherrine, I know I should get my eyes checked again. rolleyes )

in the land of Limbo, taking OTC meds (which don't work).  Started at 5mg of amitriptyline.
Waiting for referral to rheumy to get a dx. waiting, waiting, waiting....

Post Edited (mamanan) : 9/12/2008 9:21:54 AM (GMT-6)

Forum Moderator

Date Joined Apr 2005
Total Posts : 17059
   Posted 9/12/2008 1:25 PM (GMT -6)   
Hi, Mamanan!  My eyes are a little wonky after reading that post of yours!  shocked    Just kidding!  tongue
I've had fibromyalgia for 21 years so far.  Now, I NEVER stop to think about living my whole life in pain.  I always think about the things I want to get done in the day, the fun plans I have for the weekend, enjoying my daughter when she is home, taking my dog for a walk, etc.  I think you get the picture.  I NEVER dwell on my health issues.  I just plan around them.  If I stopped to think of the challenges possibly ahead of me, I would be a depressed mess!  So, I live every day to the fullest. 
I look at my wonderful mother.  She was the picture of health.  She never was sick and had such a full and wonderful life.  She would get up at 5 AM, ride her exercise bike for five miles then get dressed and go over to her clubhouse and work on the cardiogliders!  She was in her 70's doing this!  Then she would go home, take a bath, eat breakfast, and head out for the day...and it was only 8 AM!  She played duplicate bridge four days a week, bowled in a league, did Meals-On-Wheels, and was active in her church.  She always felt badly that I had so many health problems and she never had one. 
One morning, when she was 75 years old, she got out of bed and had a brainstem stroke!  She nearly died but fought valiantly.  She kept having stroke after stroke, lost her ability to walk and to even swallow!  She had to have a stomach tube to be fed for the last 1 1/2 years of her life.  She mercifully passed on when she was 78 years old.  You know, that really put things in perspective for me.  You never know what life holds for you.  Even though I had the pain, the hearing loss, etc., I had it far better than my precious mother.  Besides, they could possibly find a cause and then a cure for what ailed me.  
I never think about how I feel.  I just move forward with my life and am so thankful that I can be independent, take care of myself, I can eat, I can enjoy all that life has to offer.  Pity parties stopped when I started taking care of Mom.  Those pity parties were taken over by sincere thankfulness for my good health!  
Now, about the malic acid.  I'm sooo glad that you aren't having a real problem taking it.  You don't have to eat a lot of food to take it.  When I was breaking myself in, I took one pill after breakfast.  Then I would take one after breakfast and the second after dinner.  When I started three, I took one after breakfast, lunch, and dinner.  If that doesn't work with your schedule, just take two after breakfast and one after dinner.  I now take four a day...two after breakfast and two after dinner.  
I'm glad you hubby helped you out at the doctor's too.  It's wonderful to have your spouse be your advocate, too!  Give him a hug for me!   blush  
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

Veteran Member

Date Joined Apr 2008
Total Posts : 605
   Posted 9/12/2008 1:48 PM (GMT -6)   
Hi Mamanan,
Don't worry about making a long post,I read it all and it was great.  I am glad that you got some meds that are helping with your pain.  I too am in a transitional stage right now and do have thoughts of having my life filled with pain forever.  even before the fibro I had chronic pain from injuries so I am no stranger to pain.  I am trying to stay positive but it does help to post here specially when I am having a rough time of it.  It seems like just venting helps you to get through the pain and having others that have been there helps too.  I just got over a horrible case of the flu so right now i am just enjoying keeping my head out of the toilet.  I hate feeling sick to my stomach worse then pain. I had vertigo something aweful and had trouble walking and forget about eating yuk.  I am slowly eating again with just small things as my stomach shank I think cause I sure get full fast now.  I did lose 10 pounds while I was sick and had wanted to drop some weight so I guess that turned out ok but I dont recommend using the flu as a diet lol.  Since I dont have such a big appitite now I am sticking to very small meals about 5 times a day so that way I am helping to keep my sugars more steady( I am diabetic) and not having so many hypoglycemic episodes.  It is great that your hubby is there for you.  My husband has gone to many appts with me and has advocated for me more then once.  He even went in with me for a mamogram!!  He was shocked and said I never knew how painful being a woman could be.  I am due for anther one and my full yearly and not looking forward to either.  Take care and enjoy the quiet when the kids are in school yeah .
Soft Hug's,
Mom of one gramma to 4 lover to One
Fibromyalgia,IBS,Stroke x2,endometriosis,Diabetes type 2,neuropathic pain,nerve damage due to tailbone removel,nerve damage due to fractured back,deppresion,high blood pressure,severe nausea,atrophy,chronic pain,nerve damage due to botched bladder surgery,torn hip joint,hypoglycymic
Norco(double strength vicodin) 80 to 100 mg @ day
Ms Contin(morphine) 45 mg @ day,Lyrica 600mg @ day

Veteran Member

Date Joined Jun 2008
Total Posts : 846
   Posted 9/12/2008 3:29 PM (GMT -6)   
Well Sherrine, I find your choice of colour makes my eyes go wonky.  It's too bright, those pesky after images, you know?  So there! tongue
Your mother sounds like she was an amazing woman.  She must have been in better shape then many 30 year olds!  Her last few years must have been so difficult on everyone.  I really love your outlook, Little Miss Sunshine cool I know that there are much worse things than fibro.  And like I said, I think I'm one of the lucky ones.  But it was so difficult gettign the pain again after feelign so good.  I was thinking that I was healed.  I know there is no such thing with fibro, but that was how it felt.  Then the fantasy came crashing down.  I think it's the 'curing' part of my thinking that I have to alter.  I have to look at it as good days instead, and enjoy them while they last without wondering how long it will last.  So how long does this whole process of accepting fibro take? 
Karen, I'm so glad that you are feeling better!  I hate throwing up too, there is nothing worse.   And you are so right, it helps to get things off our chest.  That is why we all come here right?  To vent to people who understand smilewinkgrin
in the land of Limbo, taking OTC meds (which don't work).  Started at 5mg of amitriptyline.
Waiting for referral to rheumy to get a dx. waiting, waiting, waiting....

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