Is anyone else in pain 24/7?

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CajunGrl
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Date Joined Mar 2009
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   Posted 4/13/2010 12:40 AM (GMT -7)   
I've read some posts here and it looks like some of you have flares. Is anyone in pain all day long? I do have good days, but not very often. I also have a entire week where all of my symptoms get pretty bad, almost intolerable. It is hard to differentiate what is Fibro pain and what is Lyme pain. I've asked this question on the Lyme board also and it seems like no one there....maybe one or two at the most....suffers with the pain all day like I do. I guess I am starting to get a little scared and worry that something else is going on.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


getting by
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Date Joined Sep 2007
Total Posts : 40573
   Posted 4/13/2010 4:43 AM (GMT -7)   
Cajungirl,

I am always in pain. But most of the time it is at a 3 or 4 on a scale of 1 to 10. I can live with that. But there are times that I flare and it is a 7 or 8. But I try to stay busy and let the pain go into the background. Did you get my email that I sent with a pic of my puppy? It was a couple of weeks ago I think. She has hiccups again. She gets them a lot.

Hope that you are having a better day today.

Hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


AustenFan
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Date Joined Aug 2008
Total Posts : 1771
   Posted 4/13/2010 5:58 AM (GMT -7)   
Ditto what Karen said. I am always in pain; it just varies in intensity from day to day. I have other conditions that exacerbate it, but most of the pain is fibro related.

Hugs - Austen
"There is no charm equal to tenderness of  heart." - Jane Austen
 
 
 
 
 
 
 
 


damouthy1
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Date Joined Sep 2009
Total Posts : 663
   Posted 4/13/2010 6:34 AM (GMT -7)   
I also have pain daily, fibro pain and headaches. I take oxycontin so it stays around a 2 or 3 on the pain scale. But like everyone else I get flares that even the oxy can't handle. I have percocet for b/t pain or I go to my doctor and get pain shots. I had one day about a month ago that after taking my morning meds I felt no pain, it was such a wierd feeling it was then I realized just how long it's been since I was pain free. I try and keep my mind busy and don't dwell on the pain, the more I think about it the worse it gets.
Gentle Hugs,
Shannon
 
Fibromyalgia, Chronic daily headaches, Migraine disorder (with and without aura), GERD, High blood pressure, Depression and Anxiety
Oxycontin, Percocet for bt/pain, Flexeril as needed, Lopressor, Lexapro, Famotidine, and Promethazine as needed for nausea from migraines


pennstate71
Regular Member


Date Joined Mar 2010
Total Posts : 90
   Posted 4/13/2010 10:56 AM (GMT -7)   
CajunGrl,
 
Looks like you've found a lot of us with Fibro that have the 24/7 pain.  Like those above, mine also varies but I believe that it's my pain meds that keep it in check.  If i run out of them or my muscle relaxers, or god forbid both (which happened one time - very very bad day) it's not good.  I can't get out of bed any morning until I've had my meds - then I can keep the edge off until the next dose.  Then there's days like today unfortunately, that there's no way I can go to work because even on all of my meds I still feel like I got hit by a truck, am getting stabbed in every joint, and my clothes can't touch my skin....that's my flare.  I haven't had a pain free day in a few years...but the days where its at an average of 3  for the day - are like my "pain free" days so they make me happy :)  I have CFS too so sometimes i feel like I should get moving more for the Fibro, but then I get exhausted and hurt from the CFS.  I am hoping to join a clinic that hopefully has a pool treated with bromine and not chlorine (as I have vulvodynia as well and chlorine down there doesn't go very well - sorry for the TMI).  You aren't alone, I just hope you are being treated with the right combination of meds and can try to find some positive out there to keep you at least ok.  Wishing you the best...yeah

puppylover
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Date Joined Feb 2009
Total Posts : 821
   Posted 4/13/2010 12:06 PM (GMT -7)   
I am never pain free. The only time I remember being pain free in recent years was when I was in the hospital for an unrelated illness. I was on pain shots every 6 hours. It was wonderful.

That being said, I do not let the pain control my life. I try to be active everyday. Yesterday morning I woke up feeling very sick and I knew before I got up that it must be raining. It was. I took my diclofenac and kind of waited for it to kick in. By late afternoon I was on the elliptical machine for 35 minutes and then did some stretching. I was in lots of pain this morning but I was able to take my golden for a 2 mile walk and then did stretching on my pilates machine. I feel better but not pain free. I find being physically active helps my body and my mind. I joke with my friend that I'm not dead yet, so I plan to keep as active as possible. wink
Puppylover
 
Fibromyalgia, arthritis in spine and hips, IBS, Raynaud's syndrome, hypertension
 
On the eighth day God created Golden Retrievers.


Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5929
   Posted 4/13/2010 12:16 PM (GMT -7)   
This is a hard question to answer when you really think about it, because we're so used to pain. My body never feels normal, but I guess sometimes when I'm still (or lucky,) the pain is a 2, but it goes up quickly if I do anything at all. To paraphrase Forrest Gump, "Fibromyalgia is like a box of chocoaltes, you never know what you're gonna get!"
Debbie
 
  Diagnosed: Fibromyalgia, Meniere's, mild liver damage (why?), keloid scar tissue (from burn) on back, arthritis, lumbar disc damage, IBS, migraine
  Meds: Nortriptyline, Clonazepam, Darvocet as needed
multivitamins, l-lysine, probiotics, magnesium, malic acid, calcium + vit. D, vit. C
  Chiropractic adjustments


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 4/13/2010 11:37 PM (GMT -7)   
Thanks everyone for the reply. You see, that's what I am concerned about....I cannot even attempt to stretch or exercise. I barely move my legs and they hurt so bad. I don't understand how some of you exercise. I am so fatigued all the time, that it's a job for me to even move. maybe I just need to be on the right medication. I do know that the Tramadol I am taking is not enough. I did try hydrocodone, but the Ibuprofen in it upsets my stomach really bad. It made my esophagus burn even, but it did work. How ironic huh? I cannot take anything with tylenol because I have elevated liver enzymes so I'm in a pickle either way.

Maybe I need to see a pain specialist.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


council lady
Regular Member


Date Joined Mar 2010
Total Posts : 137
   Posted 4/14/2010 7:28 AM (GMT -7)   
I agree the fatique is one of the biggest problems, it can make the pain feel 10x worse, not to mention what it can do mentally. it is a constant struggle to get up each morning and go to work, and to walk each evening. yes, I still have pain every day, but have only been on the cymbalta for a week. and my back is another problem all on its own, so it never quits hurting. don't think of excersising or stretching, find something you really enjoy and work towards that, maybe its cooking or baking something and giving it to someone who has helped you, if you like to read- get out to the library, does someone have beautiful flowers close by - go walk by them - or just walk around the block to explore your neighbors yards. Getting your mind off of the pain and fatique is 80% of the battle.
 
Fibromyalgia,  RLS, IBS, bulging discs,
 
Cymbalta,  Vit B12 shots,  2000 IU Vit D3


Hopegirl
Veteran Member


Date Joined May 2008
Total Posts : 704
   Posted 4/14/2010 9:49 AM (GMT -7)   
 
Hi Cajun Grl,
 
I would try to see a specialist. I went back and forth with different pain meds. Not until a few weeks ago that my doctor put me on long hour pain relief, I take a pill at 7am and 7pm. It has made such a difference in my life. I can actually function now. The only sad part is, I have a feeling it is going to have to be adjusted, but she did say should would have to prolly up it by 5 mgs but we decided to start out at the lower dose. I'm still way better than I was without it, but I feel a lot more ache now that I did for the first almost two weeks.
 
Monica without this meds...pain all the time between a 5-7 mostly 5.5 or 6ish, flares then a 7 to 7.5 for sure. Migranes are a 8 for me for sure. But have not had one of those lately.
 
Good luck, ps Lortab's did not cut it for me. I was not on the one with ibupro just regular. I take percocets too for break thru
 
 
Hopegirl... 
 
Taking it one day at a time.... 


GSDgirl
Veteran Member


Date Joined Mar 2010
Total Posts : 1286
   Posted 4/14/2010 10:52 AM (GMT -7)   
Hi Hopeful, could you please share with us the name of your new med?
 
Thank You
Denise from Pittsburgh, Pa
 ***diagnosis: high blood pressure, gastritis, fibromyalgia, hepatitis (SVR),  disc problems in neck, depression, anxiety & stress
 ***meds: metroplol 25mg, zoloft 150mg, gabapentin 300mg 3x a day zocor , (soma, fioronal, tramadol, as needed).
 ***other supps: calcium, vit D 2,000-4,000 per, milk thistle, vit C &E, acidopholos (sp?),  
CO-Q 10,  flax or fish oil, ginsing, magnesium, B complex,
 


Hopegirl
Veteran Member


Date Joined May 2008
Total Posts : 704
   Posted 4/14/2010 10:56 AM (GMT -7)   
sorry, its not a "new" meds just new for me, its the smallest dose of oxy 10 mgs it manages my pain better than the fast acting stay in your system for 4-6 hours meds
 
 
 
Hopegirl... 
 
Taking it one day at a time.... 


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17095
   Posted 4/14/2010 1:06 PM (GMT -7)   
Cajun, you have to move.  I know it hurts but the more sedentary you are the worse you will be.  Four years ago I could barely move.  I would be in tears trying to get out of a chair.  My son visited me and we went to an animal park and I had to pay someone to drive me around in a golf cart because I hurt so badly.  Well, that really ticked me off!  I didn't want this to be my life so I did what I had to to get back on my feet.
 
I started stretching and then walking daily.  When I started out, I could only go four houses down and had to turn around.  But, I kept at it and walked a little further each day.  I didn't feel like doing anything because if I didn't move, I didn't hurt as much.  But, I saw where that was getting me!  I was loosing muscle tone too.  The saying, "If you don't use it you will loose it" is very true. 
 
Now, I start out the day walking my dog for 1-1 1/2 miles.  I walk a lot around the house and with shopping, too.  I have more energy and am less fatigued after a walk...usually.  My son came this past December and we went to DisneyWorld for the day.  As we were entering the park, he asked me if I wanted to get a wheelchair.  I said No.  Well, Cajun, I walked all through that huge park...Fantasyland...from 9 AM to 6 PM!  I was even able to ride the rides...including Splash Mountain with it's 55 foot drop!  What a difference four years of moving made for me!
 
By the way, don't sit in front of the computer for long periods of time.  Get up and walk around every 15 minutes or so.  As a mod, I know that the time escapes you.  I did that this winter and when I went for a massage, she could feel the difference in my legs and said the circulation wasn't as good.  So, I'm not on the computer as much now and I had a massage today and my muscles were back to "normal" for me.
 
Just start moving and try to do a little more each day to slowly build up your strength.  The pain should start to go down after a while...unless you are in a flare.  I've had bad flares and have had them last up to six months.  Not fun, but I kept on walking, even though I was limping some days.  I would just focus on the beauty around me and ignore the pain as much as possible and I would make it through the walk and give myself a pat on the back.  It can be done.
 
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


Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5929
   Posted 4/14/2010 1:11 PM (GMT -7)   
Sherrine,
You are certainly an inspiration to me! Thanks for everything you do here.
Debbie
 
  Diagnosed: Fibromyalgia, Meniere's, elevated liver enzymes (why?), keloid scar tissue (from burn) on back, arthritis, scoliosis, lumbar disc damage, IBS, migraine
  Meds: Nortriptyline, Clonazepam, Darvocet as needed
multivitamins, l-lysine, probiotics, magnesium, malic acid, calcium + vit. D, vit. C
  Chiropractic adjustments


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17095
   Posted 4/14/2010 2:41 PM (GMT -7)   
Oh, thank you so much Debbie!  Your post meant a lot to me and it sure made my day!  yeah
 
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


Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5929
   Posted 4/14/2010 4:52 PM (GMT -7)   
Sherrine,
Ditto! smile
Debbie
 
  Diagnosed: Fibromyalgia, Meniere's, elevated liver enzymes (why?), keloid scar tissue (from burn) on back, arthritis, scoliosis, lumbar disc damage, IBS, migraine
  Meds: Nortriptyline, Clonazepam, Darvocet as needed
multivitamins, l-lysine, probiotics, magnesium, malic acid, calcium + vit. D, vit. C
  Chiropractic adjustments


JourneyOn
New Member


Date Joined Mar 2010
Total Posts : 13
   Posted 4/15/2010 1:35 AM (GMT -7)   
I have really enjoyed reading all these comments on this thread! I too have pain 24/7 and was in a lot of pain to even get out of bed in the mornings- just a few weeks ago! On here, it was suggested that I keep on moving and so i did. We took a vacation to the coast for an entire week and i did a lot of walking there which felt really good! So now, back at home, I am walking in a park and pushing myself a little and feeling more flexible and fluid. I also find it very important and helpful to get up from the computer often and move around. The rice socks has done wonders for me in relaxing before bed and sleeping well. You might want to try those which I learned about on here as well! :)

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17095
   Posted 4/15/2010 8:37 AM (GMT -7)   
JourneyOn, your post gave me goosebumps!  I'm soooo happy that you were able to get out and really enjoy yourself and feel much better, too!  You didn't let fibromyalgia control you and you ended up with wonderful memories.  Give yourself a big, gentle pat on the back!
 
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


JourneyOn
New Member


Date Joined Mar 2010
Total Posts : 13
   Posted 4/15/2010 10:13 PM (GMT -7)   
Thanks Sherrine! I found out also that it helped to go to bed early and spend some extra time getting comfy and cozy. The extra sleep did wonders- I had no TV, computer, or chores to keep me up! ;) The warm sun and sand on the beach was so healing and I made a reclining chair by digging out the sand and putting a beach towel in it! lol! It even had lumbar support and a head rest! Climbing on the rocks was a little bit more challenging and I got muscles stretched that I didn't know I had! lol! The next day, I was none the worse but more energetic and ready to rule the dunes. I met some really nice people and families at the camp on my morning walks with my coffee- some that had fibro and other problems like MS and CP. The ocean air seemed to be good for them and even healing. At the end of the day, sometimes I spent half hour or 45 minutes in the hot shower which felt really nice. Then I jumped into my sleeping bag and got nice and cozy. Now, I didn't have my rice socks bc I didn't know how I would warm them up and the bed mattresses were hard foam. I thought I would feel "beat up" in the mornings but miraculously, I was not. I was rather refreshed and not in too much pain. One of the camp hosts contributed it to the sea air. Something to think about... ;)
JourneyOn!
 
PTSD, Fibromyalgia, Chronic Depression, Anxiety, Lower Spine Arthritis, Seasonal Allergies, Asthma
 
Meds: Zoloft 150mg, IB 800mg, Ferrous Sulfate, Vit. D3, Zyrtec, Melaleuca Women's AM/PM vitamin packs


Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5929
   Posted 4/16/2010 12:01 PM (GMT -7)   
Journey,
Your beach vacation sounds like my idea of heaven. Sun, sand, sea air. I esp. liked your description of making your own sand chair.
Debbie
 
  Diagnosed: Fibromyalgia, Meniere's, elevated liver enzymes (why?), keloid scar tissue (from burn) on back, arthritis, scoliosis, lumbar disc damage, IBS, migraine
  Meds: Nortriptyline, Clonazepam, Darvocet as needed
multivitamins, l-lysine, probiotics, magnesium, malic acid, calcium + vit. D, vit. C
  Chiropractic adjustments


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 4/16/2010 1:14 PM (GMT -7)   
Thanks so much everyone for replying. You have all given me great responses and suggestions. This is a great group here and I appreciate everything.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum

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