FM and Ulcerative colititis

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ledaebel
Regular Member


Date Joined Jul 2006
Total Posts : 339
   Posted 8/8/2008 1:16 PM (GMT -6)   
I have not been on line here for a long time. Guess I need support and help in asking my Doc's about these 2 diseases. My my Rheumy thinks that UC, arthritis and Fibromyalgia seem to go hand in hand. HELP! about 2 weeks ago I begn having more pains at night and and terrible sleeplessness. I am a nurse who basically deals with only Post-Op s so I know very little about the medical side of things.

I was afraid I was getting alzheimers since I could'nt remember common things. I almost quit work, you know, and do no harm. My daughter is really worried. The MDs reassured me that this was just a lack of sleep. I was put on a Medrol Dosepak which made th insomnia worse. At the same time my fleseril was increased to 20 - 30mg at night and tostart taking the med around 6PM. Nothing seemed to help the insomnia and horrible fatigue.

Yesterday, they gave me a sample supply (6) of Lunesta and I slept a good portion of the night. The pain is mostly gone.

What do we do to keep this pain, stiffness and insomnia away? Life does not seem worth living like this.
  • LINDA
         
Prescriptions: Lialda (on a study) asacol, hycosamine, protonix, synthroid, zyrtec, avalide, nasocort, Miacalcin spray and Trazadone for sleep.
OTCs:  Usana multivitamins and multiminerals, Usana Procosa, Usana Mega Antioxidants, Omega 3, Vit. E,  Healthy trinity probiotics, Calcium Citrate


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 14990
   Posted 8/8/2008 1:44 PM (GMT -6)   
Linda, you do not have Alzheimer's.  I thought I did too when the fog hit.  It can be scary but don't worry about it.  It's not constant.
 
Many with fibro have arthritis and some THINK they have arthritis since fibro affects the muscles, tendons and ligaments.  I've had joints that I swore were arthritic.  They were extremely sore, I'd have swelling, and even warmth.  It would last for months and then go away.  Arthritis doesn't do that, as far as I know.  Arthritis damages the joints so it doesn't go away but fibro doesn't hurt the joints at all.  It's muscle pain that is being felt.
 
Also, many with fibro have IBS.  I keep saying many because not all have arthritis or IBS.  So, they really don't go hand in hand.  At least that's my humble opinion.
 
I started taking malic acid/magnesium supplements last December and that has helped me a lot.  They help with pain and fatigue and you could sleep better too.  The magnesium helps with that.  My cousin started sleeping so much better once she started this.  Now, it doesn't work for everyone, but it is worth a shot.  They aren't expensive, either, at least where I get mine.  I wrote a thread all about it and I'll bump it up for you.
 
Try, also, to put yourself on a sleep schedule.  That does help with sleeping.  Also, avoid caffeine.  (Don't forget there is caffeine in chocolate.)  That keeps many awake!  I usually get a little sleepy in the afternoon and I do have a cup of hot tea.  There is not nearly as much caffeine in the tea than in coffee.  It's just enough to give me a boost but I still can sleep at night.  Also, I would stay away from candy and a lot of carbs during the day.  You know that they raise your blood sugar and that can make you sleepy, too. 
 
But, I still wake up many times a night.  It does go with the territory but I'm not exhausted all day long.  Once I get up and moving, I do just fine.  Be sure to do walking and gentle exercises. 
 
Check out the Fibro 101 thread.  It's the second thread from the top of the forum.  There are links to stretching exercises and other good stuff.  I'm sure, being a nurse, you get plenty of walking in, though. 
 
I do hope some of this helps you.  Let us know!
 
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 8/8/2008 1:47 PM (GMT -6)   
Hi Linda, I don't have UC but I do have a lot of digestive issues. I've never been told they go hand in hand with fibro. I also have osteoarthritis.
 
As you know the lack of sleep can affect everyone with or without fibro. I'm glad the lunesta helped. I go through times when I do not sleep well, it comes and goes like the pain and pain is probably a big factor. If I don't get a good night sleep I'm shot for the next day. Today seems to be one of those days. It takes so little to throw us off sometimes. Just a couple of hours of missed sleep can do it for me.
 
I try to stick to a sleep schedule and keep things relaxed in the evenings before bedtime. I take 100 mg amitriptyline and 1 1/2 mg of xanax at bedtime which works pretty well for me most nights.
 
As far as the pain I can get by with 4000 mg of tylenol a day with a tramadol occasionally.
 
I think if you get some well needed sleep you will feel better.
 
Life is always worth living so please don't talk like that. We have to look for the positive even on the bad days.
 
We are always here for you.
 
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


Sue2z
Regular Member


Date Joined Jul 2008
Total Posts : 368
   Posted 8/9/2008 12:30 AM (GMT -6)   

Unfortunately its a bit diff for everyone.  I was on 9 diff drugs at one stage and felt they were doing next to nothing, finally after trial and error I am on the right drugs and try to avoid stress where ever you can.  I found a doc was not enough so I see a pain specialist who specialises in arthritus, rheumatology. so got the best of both worlds.  Now thanks to Norspan patch I am almost pain free but its always there even in the way you move to try avoid pain, sitting, sleeping everything still there but at least now its manageable.


Fibromyalgia, ulcerative colonitus, arthritus, bi-polar
norspan patch, valium, prothiedon, lyrica


Sue2z
Regular Member


Date Joined Jul 2008
Total Posts : 368
   Posted 8/9/2008 12:36 AM (GMT -6)   

I just wrote you and I forgot what I was writing about.  The ulcerative colonitus.  I have it bad.  I have to live on laxatives and bulking agents because the pain drugs affect it.  I can never even leave the house until I have moved my bowels, it is a constant nuisance and actually a big worry to me.  Wish I could get off the meds, 

mad    Maybe one day I will be able to cut it down. It literally leaves me redface     Have a good day wont you, Im in australia so you'll be asleep :-) :-)     sue2z


Fibromyalgia, ulcerative colonitus, arthritus, bi-polar
norspan patch, valium, prothiedon, lyrica


searchingforanswers
Regular Member


Date Joined Jun 2008
Total Posts : 44
   Posted 8/9/2008 10:16 AM (GMT -6)   
Dear Sue2z,

I am in the US. What is a Norspan patch? I've looked and can't find it anywhere. Is it more or less potent than Trammadol (Ultram)?
 Bev...searchingforanswers
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
 
mother of four sons, grandma to five, wife to one wonderful husband
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
fibromyalgia since 1993
Cymbalta, Tramadol, Lyrica, Xanex
 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
 
 Love people and use things NOT love things and use people.
 
 
 He is richest who is content with the least....Socrates


ledaebel
Regular Member


Date Joined Jul 2006
Total Posts : 339
   Posted 8/9/2008 12:15 PM (GMT -6)   

Everyone, thank you for your support.  I'm in Northern Illinois, US.

Last Wed. I thought it was getting to be the end.  I couldn't think clearly, this was severe, and I hurt all over.  Then my dentist ordered a medrol dospak that made the isomnia so much worse.  The good side is the pain is mostly gone.  I guess I went thru my first flair!  The Lord help me, not sure if I could go thru this again...........pain, confusion, severe fatigue, insomnia, hot flashes accopainied by brief anxiety and all.  It even started my UC acting up.

I now praise the healing power of a good night's sleep, actually 2 good nights.

Now I ask how Malik Acid works?  I bought some.

 


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<FONT color=blue>Prescriptions: Lialda , Bentyl, protonix, synthroid, zyrtec, avalide, nasocort, Miacalcin spray and Trazadone for sleep (doesn't work), flexeril & tramadol 3x day

<FONT color=#0000ff>OTCs: Usana multivitamins and multiminerals, Usana Procosa, Usana Mega Antioxidants, Omega 3, Vit. E, Healthy trinity probiotics, Calcium Citrate


Sue2z
Regular Member


Date Joined Jul 2008
Total Posts : 368
   Posted 8/9/2008 7:39 PM (GMT -6)   

Searching for answers, the docs are able to prescribe much more than they make out.  Its other name is buprenorphine , I have 10mg patch on my back which gets changed weekly,  I got it through my pain specialist, rheumy, he is both after I couldnt take other meds because of colinitus.  The pain virtually went, 70% improvement.  I was upset to find out my doc could of prescribed anyways but they like it to cme from a specialist I guess.  I think there are many meds we never hear about it and it makes me angry when I read about everyone in so  much pain when there are meds that may be of help.  There is another patch I have heard of which I will look up.

I hope you have a manageable day and a great weekend.   bye for now  sue2z :-) :-) :-)


Fibromyalgia, ulcerative colonitus, arthritus, bi-polar
norspan patch, valium, prothiedon, lyrica


Sue2z
Regular Member


Date Joined Jul 2008
Total Posts : 368
   Posted 8/9/2008 7:43 PM (GMT -6)   
Forgot to answer your question.    Much better than tramadol ect.  It is an opioid and works diff.  Its delivers 10mg per hour into my system for a week then I put a new one on.  It is also very cheap.  30$ per month.  Even if not available in states there will be equivalent I will find the other one and post

Fibromyalgia, ulcerative colonitus, arthritus, bi-polar
norspan patch, valium, prothiedon, lyrica


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 8/9/2008 8:18 PM (GMT -6)   
Linda, I'm in central Illinois. I hope you don't have another flare but that is always a possibility. Be prepared with plenty of things that give off moist heat shower, baths, rice bags you put in the microwave, moist heating pad or hot tub. I use TENS unit when it gets very bad. Try to relax when the pain starts, the more your stressed the worse it gets. No matter how bad you hurt make sure you stretch and move. Taking to the bed does not help and can make it worse. It will go away and keep telling yourself that. Try to distract yourself from the pain by watching movies and taking breaks during them. I watched one with my grandson yesterday that will hold your attention and take your mind off of pain "August Rush".
 
 
I know working with fibro and UC can be a problem. 
 
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


nrthngrl
Regular Member


Date Joined Jun 2008
Total Posts : 56
   Posted 8/9/2008 10:55 PM (GMT -6)   
HI Linda, I have undetermined colitis, I have been sick with it for about a year and a half. about 5-6 months ago I started with a flare of fibro. Alot of people with a disease CD/UC, Diabetes, Lupus etc will develope fibro and/or CF as a secondary syndrom/disease. My Dr seems to believe my FMS and CFS were a direct result of my CD/UC problems. I also thought I was losing my mind when I would forget simple everyday tasks. I am on 40 mg of nortriptyline and it seems to have helped me out alot. I am getting better sleep and the pain and stiffness has lowered alot, but not gone completly. Hang in there, you are not alone.
Fibro & CFS dx 06-'08....Gastritis 04-'08....IBD(undetermined) 04-'07
Nortriptilyne - Fibro/CFS,  Pantoloc- Gastritis,  Asacol & Buscopan- IBD,
Diazepam, demerol, codiene, tramacet for pain
b12 inj, fish oil, folic acid, acidophilus. 


Sue2z
Regular Member


Date Joined Jul 2008
Total Posts : 368
   Posted 8/10/2008 2:40 AM (GMT -6)   
To Searching For Answers
Just letting you know ive answered your email on the drug Norspan, it is under the ulcerative colinitus posting.  luck.
sue2z :-) :-)
Fibromyalgia, ulcerative colonitus, arthritus, bi-polar
norspan patch, valium, prothiedon, lyrica


ledaebel
Regular Member


Date Joined Jul 2006
Total Posts : 339
   Posted 8/10/2008 12:51 PM (GMT -6)   

Thanks everyone.  You helped me get through another bad stretch of life.  The other one was during 9ml of a UC flare.

I woke up feeling great today.  Strang isn't it?  I guess the dreaded steroids did its job but it made my insomnia worse.  Think I'll go out and trim some grass.  And after reading some other threads I'll try to take it easy.

 


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<FONT color=blue>Prescriptions: Lialda , Bentyl, protonix, synthroid, zyrtec, avalide, nasocort, Miacalcin spray and Trazadone for sleep (doesn't work), flexeril & tramadol 3x day

<FONT color=#0000ff>OTCs: Usana multivitamins and multiminerals, Usana Procosa, Usana Mega Antioxidants, Omega 3, Vit. E, Healthy trinity probiotics, Calcium Citrate

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