Question about the pain in knees and feet and hands?

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aggscott
Regular Member


Date Joined Oct 2007
Total Posts : 35
   Posted 10/15/2007 11:16 AM (GMT -7)   
Hi all~
 
I thought I would ask everyone here-how do you put up with it? I've had this off and on but mostly on from the time I had that flare three weeks ago-it won't go away. In my knees it's annoying, I walk around..that starts to hurt more so I sit.Up-down-up down..
I'm surprised that the Methadone I take for pain doesn't cover it, is it a different type of pain? (does that make sense?)
 
So what do you do to help it?
 
Aggie
 
 
 
 

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/15/2007 12:45 PM (GMT -7)   
Hi Aggie . . . I'm sure some serious knee pain sufferers will be along shortly to help. Lots of our pain is caused by inflammation so generally a first course of action is to take anti-inflammatories. Most of us take plaquenil plus one or more other anti-inflams. Sometimes, when we are reluctant to take meds as needed (such as ibuprofen) we take the minimum amount when actually it might be best to take the maximum amount to kick that inflammation. The pain killers are for any breakthru pain after that. Many of us can't control the pain well enough with the safer anti-inflams and have to depend on prednisone or other big guns. Maybe you could share your list of meds so some of the others can help you sort this out. . . .but, of course, it must always be with the blessing of your doctor.

Make sure you tell him/her EACH visit EVERYthing that hurts. If you don't mention it, they just think that issue went away. Most of us use a written list which we give the doctor each visit. For an example form, click on the link in my signature "Lupus Resources" . . . there are lots of suggestions in the posts in that topic . . . go down toward the middle of the string and you'll see suggestions from all the members here.

Glad you found us . . . and welcome to the forum Aggie!!

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

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Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 10/15/2007 2:46 PM (GMT -7)   
Aggie,
 
Methodone is an analgesic (pain relieving) drug but I have never heard it used for arthritic knees of any kind...mainly to treat heroin addicts kick their habit. 
 
Knees are complicated structures and you could have some kind of structural problem, muscle imbalance, joint wear or damage that could be causing the pain.  Lupus can cause joint inflamation and it attacked ALL of my joints before getting it under control.  It is also not uncommon for those with lupus to have rheumatoid arthritis.  In short, treating the pain without knowing what is causing it is only a short term solution.  I suggest that you see your rheumy and possibly an orthopedic knee specialist.
 
The lupus induced pain and swelling disappeared after prednisone "tranquilized" my immune system.  It also helps with inflammed joints as a powerful anti inflammatory.  However, severely inflammed joints are usually treated with a cortisone injection which is a local rather than a systemic treatment like oral prednisone.
 
From your brief description it sounds like you have a lupus induced problem.  Usually, some NSAID is prescribed.  Fairly mild ones at first, then more powerful ones if necessary.
 
I have been on pred for 2 years and am close to being off it and some of my arthritic, pre lupus pains are coming back.  At some point I will probably have to take some type of NSAID for the problems.  Before I got sick I took celebrex which was deemed unsafe and then OK for some.
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone (6mg & tapering), 75mg imuran, lisinopril 40mg, maxide 37.5/25mg, norvasc 5 mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


aggscott
Regular Member


Date Joined Oct 2007
Total Posts : 35
   Posted 10/15/2007 3:35 PM (GMT -7)   

Hi Bill & Always Rosie,

 

Thanks for the welcome, this is a great place-lots to learn!

Bill, I take Methadone not for the Lupus but, for other pain related problems. I know it doesn't treat the pain but it does help with the pain so that I can live a somewhat normal life. I have alot of back problems that can't be fixed, Fibro, and Myofasical Trigger Point Syndrome.I take it only for the pain, not for drug addiction. I honestly can't say enough about it, it has given me my life back. :-)

Yes I agree it's Lupus related, I've been lucky so far and I can honestly say I've never had trouble with these areas, just recently. The Prednizone helped with so much, these areas just seem to be holding on and not giving up. mad  

I was taking NSAID's for the longest time and it helped alot, then I had the flare. When I went to the Rhumey she put me on Prednizone  and said no NSAID's while on the prednizone, too much for my stomach I guess..On days like this I miss them..

Not that I will go against what my doctor said but did anyone ever take predizone and NSAID's? Did it bother you in any way? I'm just curious..

Thanks again for the welcome!

 

tongue Aggie tongue


Gidget^
Regular Member


Date Joined Aug 2007
Total Posts : 171
   Posted 10/15/2007 4:29 PM (GMT -7)   
Aggie,
I was on heavy dose of pred for 3 weeks with my anti-inflammatory (Clinoril) and didn't have any problems. I made sure I ate with the pred though, I wasn't that adventurous. Maybe others have had different experiences they can post.

As for what I do to cope with the feet/knee/hand pain I have not found really any pain meds that help too much. Sometimes Loratab 10's work, sometimes Toradol, sometimes Oxycodone and sometimes nothing works. Whenever it's bad enough to take something I try not to use that part of my body too much. If it's my hands or fingers I use some type of a hand splint, if it's my feet I wrap them with an elastic wrap. It's all a guessing game.

Good luck!
Gidget^
 
SLE 9/07, FMS '90's, Spinal Stenosis, Osteoarthritis, Sinus Tach, PVC's, Kidney Stones, RLS, Parotid Neurofibroma 8/04, Cervical Cancer 9/06
Plaquenil, Clinoril, Toprol XL, Prozac, Zyrtec-D, Zocor, Vitamins B6 & B12, Folic Acid, Toradol, Percoset, Loratab
 
There is no psychiatrist in the world like a puppy licking your face.
 
 

Post Edited (Gidget^) : 10/15/2007 5:36:53 PM (GMT-6)


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 10/15/2007 5:08 PM (GMT -7)   
Never took pred and an nsaid at the same time so can't answer your question.  The dosage you take might also have a lot to do with it.  At first I took 60mg of pred...now only 5mg and going lower every month.  Prednisone can be rough on the stomach.  I have something called barretts esophagus but it is probably caused by the polymyositis that I have....weakens the spincter muscles at the top of the stomach causing acid reflux.  Pred does not help though.
 
Here is an article on prednisone that might be a start although it does not answer your question directly.
 
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone (6mg & tapering), 75mg imuran, lisinopril 40mg, maxide 37.5/25mg, norvasc 5 mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 10/15/2007 10:40 PM (GMT -7)   
Hi Aggie--
I'm with you, its a real drag. I'm allergic to methadone, so I don't take it. I also won't take it due to skeletal problems it causes and the fact that it is harder to kick than heroin and more life-threatening to kick. This is something you need to research and know about. I've been in several institutions and have seen several people nearly die from trying to quit methadone and the doctors told us that they would have rather have weaned them from heroin. I know many people who have had serious problems from it. It is a crime our narcophobic society is commiting against the ill and disabled.

That being said, I understand it greatly helps. I have a new respect for strong topical arthritis creams, and I use them liberally. They may burn, but they do take away the pain. There are some good topical patches with strong amounts of camphor and the like and they work great if you want longer relief. I use them liberally. Absorbine horse linamint and other horse linaments work even better than the stuff for humans and are made much better. Also, shots of cortisone into the joints help me. Glucosamine, chondroiton and especially MSM overthe counter supplements help pain, repair joints and add fluid. My horses used to get super shots of chondrointin in their stifles when they had probems there and with three big shots, the joints were repaired and cartilage rebuilt.

Then again, I feel if it hurts, don't do it. I know docs say that exercise improves it, but if you have bone spurs, the movement of the joint wears away the cartilage and really damages the joint. So resting up and taking supplements and topicals are good and shouldn't be too harmful, then wrapping the knees or wearing knee braces are good. You can use ace bandages or horse bandages, whatever is cheaper.

If its good enough for million dollar race horses, I say I'm worth it. I may not be running the triple crown, but I do like to try to maintain my joints as long as I can.

Do you get heat in your joints? Are they hot? Running them under cool water (we used the hose for horses but however you can do it, really takes the heat out. Then apply the liniment and bandage. Take the supplements, stay off it with mild movement until they start to work. That's the script we used for the horses.

Also, your shoes could be the real culprit. Good arch supports and well fitting shoes can definitely help, you can try a good pair of sneakers or running shoes for a while or put gel inserts or other types with good support and see if it helps.

And if all else fails, then you have the pain meds too. I worry about anyone on methadone. They give it to so many people who know nothing about it and treat it like any other type of pain killer. Several documentaries have been made about it and I just feel that drugs like ultram (another non-narcotic) taken regularly every day is very effective, and toradol is as strong as morphine. Then regular old narcotics are also appropriate. Maybe try a second opinioin if your pain management doc wants you to stay on methadone long term. Some docs just care more about their liability than they do about their patients longterm well-being. If you have a serious illness and are in pain, you have a right to safe, healthy medication.
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


aggscott
Regular Member


Date Joined Oct 2007
Total Posts : 35
   Posted 10/16/2007 7:32 AM (GMT -7)   

Hi Marji-

Thanks for the long post, that is some good info~ cool Yes I do sometimes get hot joints-then other times freezing cold. They hurt more when there hot and feel hot to the touch..

Now for shoes-I'm a strange one there..I'm not a girly girl-no heels! I wear Birkenstocks-I love them! I have ones that are new so I'm good there-

Believe it or not I know about the hard time to get off Methadone, I've tried it before. It didn't work and I did more damage to myself than I should have.

I tried to quit cold turkey on a 20 mg dose which was a huge mistake. I wound up in such a flare that it took me over a year to retun to somewhat of a normal life again. So I know that if I ever want to get off of it, I need to taper very slowly. That is the key, slowly. My doctor understood what I was trying to do so when it didn't work she re-prescribed it for me.

I actually have a great doctor who talked to me about all the pro's and cons about it, the day she prescribed it for me I spend two hours in her office just talking. We started slow and worked up from there. It has been the med that worked for me with the least amount of side effects. The other good thing is that I am on a stable dose-I haven't changed the mgs. in years. So for me, it works.

 

Nice to meet you-

Aggie

 

 

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