Pain levels 1 to 10

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okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 11/2/2007 6:54 PM (GMT -7)   
Hi all, I was just wondering if you were not on your pain meds what you would rate your pain level at overall I know we have good and bad days but has a baseline what would you say on a scale of 1 to 10.
The reason I ask is because with my plaq and pred I also had my vicodin increased to 120 every month. that's 20 mg. a day. I used to take 90 a month and it wasn't helping enough. It just seem like an awful lot but I need it. Anyway I was wondering how much pain you have. I was wondering if maybe I need to change to somthing else because I am concerned with all the tylenol that is in it.
 
thoughts and prayers
God Bless
Lupus like symptoms, with pbc symptoms,but of course that is subject to change in a moments notice! End Stage COPD w/CHF, Cervical Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 3x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 11/2/2007 7:05 PM (GMT -7)   
Hmmmmm . . . Dr. House's preferred pain med is vicodin . . . isn't it??

Maybe if you share what type of pain you are feeling, some of us can tell you what helps that type of pain. I have joint pain and nerve pain. I haven't found anything that helps the nerve pain. . . urghhh!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 11/2/2007 7:21 PM (GMT -7)   
Thanks Rosie, Yeah your right about house but he pops them like M@M's. LOL
Well I have osteoporosis and osteoarthritis. My back hurts all the time. By the way thanks for the idea for the burning pain the doorway works a little maybe it will take time. I can give you an idea what it's like when I go to church. I can only set in a cushioned pew for about half an hour than my back starts aching so bad I have to get up and move around. Plus if we stand to sing It's like a shooting pain from my tailbone up to the middle of my back. I have pain in my knees when I go to the store. I also have another pain between my shoulder and elbow. If the slightest thing rubed againstt it it hurts like crazy. It's like I have nerves that are just below my skin or somthing. I've been setting at the computer about a half an hour I and I will have to get up and move around soon because I feel like my spine is getting crushed. I actually think that has to do with the copd/lupus lung. because my ribs don't hardly move when I take a deep breath. You know how your chest raises when you breath? Mine doesn't because the top part of my lungs don't work right.
well that's about it. they go from burning aching jabbing . Oh yeah and Now I'm wondering if I have TMJ because my jaw has been popping but that is just a quick pain and it goes away fast.
thanks hun
carol
God Bless
Lupus like symptoms, with pbc symptoms,but of course that is subject to change in a moments notice! End Stage COPD w/CHF, Cervical Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 3x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 11/2/2007 7:52 PM (GMT -7)   
(((((Carol))))))

Oh dear . . .you have a real mix!

I use a laptop computer and I sit in a recliner :-) . . . it was the best gift ever!! From hubby . . . at the time, I didn't actually realize how much I'd be using it!! We got it at BestBuy at their day after Thanksgiving sale. Always great buys!! and coming up again soon. I didn't stand in line, though . . . hubby did!!

I use a grain bag A LOT!! Use a man's tube sock and fill it just over half with whole corn (like feed corn . . . NOT pop corn) or rice or dry beans. Sew the top shut and pop it in the microwave . . . try 3 minutes and adjust from there. I have many of these around the house. In the summer, I keep them in the freezer!! Mmmmmmm. Anyway, use one like a lumbar support. I have taken them to bed and pack them around my back and butt, wherever you need support or heat. They stay warm for a couple hours. Right now, I have one in the puppy box!!! Each new puppy owner goes home with a grain bag, as my pups are quite in love with them.

I have also used Neurontin (rx med for seizures) which did help the nerve pain some and it helped me sleep.

Have you tried electric blanket??? Have your bedroom a bit on the cool side and turn on the warm blanket . . . Mmmmmm.

I don't know a thing about osteo-arthritis . . . so check this out with your PT or doctor . . . but I use a big exercise ball for my back. I sit on it and then ease it under my back and roll back and forth on it. Gives a great stretch to the back. I also do some PT exercises . . . but they require that you ly on the floor . . . when your back hurts, that is not an inviting position . . . but those exercises really do help. The best help for your back is to strengthen your core (abdominals) . . . takes some real commitment, but the exercises aren't hard . . you just have to make it a priority. If the abdominals work well, it takes a lot of strain off your back.

Have you tried pillows under your knees? Another good use for a warm grain bag.

I know none of these things cures the pain, but sometimes its just so darned frustrating to go to bed w/o any prospects of relief. I really feel for you Carol. Last one in the hot tub is it!!!!!

A couple members here use a pain patch!! That sounds like the ticket!! Time released!! I wonder if that by-passes the liver???

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 11/2/2007 8:15 PM (GMT -7)   
Hi Carol,
The pain patch is strong and will cause withdrawal symptoms that are not to pleasant and there are stiff requirments on how scripts are written and how soon you can get a refill. It was a real hassle for me, but might not be for you.

You might want to give ultram (tramadol) a try. It has no acetaminaphen and I can take it and have for a long time. It is non-addicting and if you take the max dose three times a day every day and keep it in your system, it can work pretty well. Then you can use vicodin when you need it for breakthrough pain. I find vicodin stops working very well after a while and you have to be careful because your liver can stop breaking narcotics down and they won't work for you, I've had that problem pre-surgery. You are likely going to have to live with some pain, or you can live pain free and never know if something really bad goes wrong. You have a choice. You can develop serious problems on the pain patch and not even know it because you don't feel pain. That's one of the reasons why I went off, besides the fact that after a while it was depressing being on narcotics. It took me three days to get off and it was very uncomfortable and I took a ton of klonopin to help me get off. I will only go back on again if I never have to go off again.

You could take oxycontin, roxicet, which they gave me for a while has no tylenol in it, but it is very addicting, its what all the kids are dying on and addicted to. There is a lower formulation of hydrocodone with less acetaminaphen, a 10/350 and I prefer them when I can get them.

The klonopin I take at night also increases the effects of my pain medicine, which is good. Anyway, I don't mean to be negative, but being completely out of pain isn't all its cracked up to be sometimes. Narcotics can be hard on your breathing, you can stop breathing on them. Ultram works like a narcotic, but is non-narcotic, and does not affect the breathing like narcotics do. It is not an NSAID or narcotic but its own class of drug. I thank God for it. I get 180 a month and use them all, then I get a small amount of vicodin and on bad months I can call in and get more. I wish they'd put me on a lower acetaminaphen formula or maybe back on the occasional roxicet, but they made me a little jittery.
Another thought is demerol pills, which are very inexpensive and work well for pain and are probably less addicting than oxycodone, but they last along time. They don't contain any aspirin, though you might need an antinausea medicine with some of these meds.

I hope you get fixed up ok. Some say ultram is not good for the liver, but I've been able to take for well over 5 years, quit and then have been taking it for about 5 more. There was no withdrawal when I stopped at all. It is a good med, and because you liver is a little compromised it will probably be stronger for you than for other people. It gives me the same feeling as taking a vicodin, though I have more energy and feel a little less out of it. Well, so much for drug talk. Try to be sparing on the opiates, even if you switch between demorol and hydrocodone or something, because it really is horrible when they stop working and you can develop an allergy to them if they back up in your system due to liver problems, and that would not be good. Take care and let us know what happens.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 11/3/2007 3:54 AM (GMT -7)   
Hi Rosie and Marji, I'm finding it very odd that I have developed such a low thresh hold for pain. I grew up with a dad and 4 brothers and had to learn to hold my own. Your right of passage was being able to knock my dad off his feet. Boy, girl it didn't matter.
Rosie you got one thing right my abs need some tightening up. I started doing that a few months back and than I got so sick I couldn't breath so I quit and never went back to it. I guess I need to try again. The lap top sounds like a God send. Maybe they will have them after thanksgiving this year. I got lots of beans. I new they would come in handy for somthing. I do gotta tell ya though I actually pictures putting popping corn in a sock just to see what would happen LOL! thanks for the tips.
Hi Marji, thanks for responding. I have actually tried ultram and opana and neither of them helped me. I have never asked about the 10/350 vicodin but I think you are right I may be getting to the point where they just don't work anymore. I've actually been on them for over 3 years. My old doctor put me on them because of my back and my COPD. I know if you take alot it bothers your breathing but for right now it actually relaxes my bronchial tubes. which is about all it seems to be good for at the moment. I have taken oxycodin before and it has not done anything for me. Demerol does work. I was on it for several months when i had what they DX'd as some sort of facial pain. It was so bad I begged my husband do kill me (litterally). Only problem for me and demerol is I would probably never get out of bed. I knocks me out. I havn't taken klonopin myself but my husband used to take it. He had a real bad reaction to it and it scares me. I take xanax that seems to help a little. I know what you mean about needed some pain. I can feel the really bad stuff even with the meds but when I don't have them for a couple of days all the other pains show up too. Like both of my hips hurt when when I push against them. I think that is a symptom of somthing I'm not certain.
well anyway ladies thank you so much. I hate to be a whiner I just would like to get some feed back especially going into the winter months. I hate the winter and the snow. I'm getting cold just thinking about it.
love ya
carol


God Bless
Lupus like symptoms, with pbc symptoms,but of course that is subject to change in a moments notice! End Stage COPD w/CHF, Cervical Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 3x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 11/3/2007 7:46 AM (GMT -7)   
Carol, I'm sorry you have so much pain to deal with. I have to say that without my tramadol, neurontin and the occasional hydrochodone, my pain would be near the top of the pain scale on many days. My pain is mainly in my hands, feet and knees and then I get the burning pain in my fingers and toes and the neurontin helps with that. I feel so bad for people who have chronic back pain. Every once in a while, I get pain in my back and it is awful because you can't find a position that is comfortable for very long.

I'm like Rosie and have a laptop that I sit in my recliner and use. We got it at the day after Thanksgiving sales too and my hubby stood in line for it, which was great. I wish I had some ideas for you Carol. I agree with the others that your body might have built up a tollerance to your current pain meds - it happens to people who are on pain meds long term. You might need to look into a little higher dose. I've been looking into some things for my son with winter coming and some parents whose kids have arthritis have said that electric blankets or heated matress pads have helped some with pain and morning stiffness. I hope you can find some thing that helps.

Love and hugs
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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phndoc
Regular Member


Date Joined Oct 2003
Total Posts : 495
   Posted 11/3/2007 10:26 AM (GMT -7)   
If, I am not on my meds....I can't even walk or work....I did that early this year. Was out of work for a month. Never again will I do that.

Best to all
PLAQUENIL, FLEXERIL, CELEBREX - UCTD, BENICAR - HIGH BP, SINGULAIR - ALLERGIES,  LEVITRA, AND METROGEL FOR ROSACEA 
Enjoy what you can today and leave the rest for another day.
 
Frank
 


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1547
   Posted 11/3/2007 1:02 PM (GMT -7)   
Hi Carol.  I sure am sorry that you're in such awful pain.  One tip my rheumy gave me is to take my pain meds on schedule; don't wait until I'm hurting because then it's harder to quiet the pain.  Celebrex contols my joint pain completely.  A few days per week EVERY muscle in my body hurts (fibromyalgia), but arthritis (8 hour) tylenol helps and neurontin is my extra kicker.  I recently asked for somethin stronger, got codeine, and it didn't work as well as the neurontin (gabapentin).  Other helper: hot bath with lavender salts.  I really feel for you Sis.  Lots of (((Hugs)))   Love, Butterflake

Dx: SLE diagnosed 2005, major depressive disorder, diabetes, fibromyalgia, gerd, sleep apnea (use a CPAP), hypertension, IBS
Tx: plaquenil, methotrexate, Imuran, prednisone, prozac, celebrex, lisinopril, actos, lipitor, nexeum, seroquel, arthritis tylenol  PRN: ambien, neurontin, promethazine, xanax
supplements: multi vitamin, C, flaxseed oil, calcium/D
             Better living through chemistry :D    Donna
 


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 11/3/2007 7:31 PM (GMT -7)   

Thanks Hippi, Frank, and Donna. I have never heard a neurontin until two of you mentioned it. I may try to get something different. I have been on vicodin for over 3 years so I'm thinking it just ain't gonna work anymore. I have tried to go without it and the pain is awful. With it the pain is still quite bad. Donna the soak in the hot tub sounds great and I actually got some lavender salts as a gift a while back. Now I know what to do with them. As long as they don't make my lungs hurt.

Frank I hear what your saying! Running out of pain meds is a really really bad idea!

hugs to all

 


God Bless
Lupus like symptoms, with pbc symptoms,but of course that is subject to change in a moments notice! End Stage COPD w/CHF, Cervical Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 3x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 11/4/2007 6:50 PM (GMT -7)   
Hi Carol:

I'm so sorry to hear that you're suffering from so much pain. I certainly can relate to it with you. Between the SLE/RA/Fibro/Gastroparesis my pain is through the roof. I usually start my day out at a 5 out of 10 and end my evenings at about an 8 out of 10. When I've got pleurisy or pericarditis going on then my pain is close to a 10/10.

My doctor is working at tweaking my pain meds. I take oxycontin twice a day and demerol for break through pain. It's just a matter of getting the dose correct. If I could forgo the drugs and just be boiled in hot oil all the time I would. My Rheumy suggested last time I saw him that we should buy a spa tub. You know the kind that are huge and sit in the back yard. I was like "yeah right, are you paying for it". We don't even own our own home yet, maybe I'll get one when we buy a place.

Anyhoo, I hope this helped you some. Sorry you're in so much pain my friend. Wishing you the best as always.

Your Friend,

Barb
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.

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