exercise

[ingemlb]

Hi all. I have another question re exercise. Is it better to ask for extra pain meds so that it is possible to continue trying to walk when pain flares up or should you listen to your body and rest. The Rheumotologist seemed to be stressing from day one to keep moving. However this pain doesn't improve with movement.
Are they worried about muscle atrophy as another disease symptom or medication side effect or is it simply that they feel lack of movement will make the muscles whither.
I have had long periods of immobility then on days where psin was not so strong i was able to jump on a treadmill hence muscle atrophy has never been an issue
Just wondering what others have experienced. Thanks. Inge

[Debbie C]

Good'ay Inge...I personally wouldn't take more pain meds to exercise,you body is telling you to rest and once those meds wear off you will just feel worse if nothing else try to just walk about a little at a time and don't over do it. You should be taking some Vit d-3 and calcium for your bones.

[Pete]

Exercise is needed to prevent muscle atrophy, but also to prevent deep vein thrombosis - the formation of blood clots in the veins (primarily) of your legs. Pieces of the clots can break off and go to your heart and lungs, so it's life threatening. Pain is an issue, and listening to your body is important. Start slowly on exercise - even if it's just walking around your living room once an hour. As you gain strength and feel better, slowly increase the amount of exercise you do.

[me2]

It is important to identify the type of pain you are talking about. Some types of pain should not be over ridden because further activity does further damage. If you are talking about joint pain directly caused by WG it is my understanding that ,within reason, further activity does not cause further damage and there fore I would think it would be a good trade to deal with the pain to get increased activity.

I know in my own case I have had a great deal of general pain that causes me to be inactive for long periods of time. During which I gain fat (a double whamy of no exercise and prednisone) and loose muscle (also a double whamy- same cause).

I consider it a good trade if I can get help with the pain enough to be active. My problem is convincing any doctor that I am not just a patient who is now addicted to pain killers. This is how most doctors will view the subject. My behavior of claiming pain and wanting pain medication is the same as someone with "drug seeking behavior". Never mind that I have never been addicted to pain killers and only get my meds from the same docs for a couple of dozen years.

Of course they will argue the logic of it rather than tell me they think I'm a drug addict in the making. My logic falls on deaf ears as I don't think they really understand this kind of chronic pain and how to manage it , or the fact that a patient CAN manage it better by having access to intermittent use of pain medication.
Your situation is complex and can change over time. I started out like you falling pretty much on top of the curve of being able to maintain some fitness in spite of my problems. But slowly over the course of years I lost ground and have gained fat and lost muscle- not a good thing for anyone. Lack of fitness invites a host of problems not to mention it is a lower quality of life. If I had access to judicious , and monitered use of pain medication I would be in better shape today.

[JeanMarie]

Also most of us are currently ( or were in the past) on prednisone & pred causes bone loss. One way to prevent that is with weight bearing exercise like walking. It can be gentle no need to run races but try to work up to 30 minutes a day.

We're all different but my own experience with bone/joint pain is it went away pretty quickly once I started treatment. At one time I needed help getting out of bed & but within a week I was walking without pain so I'm suspicious about continuing pain. Maybe it's time for a discussion with your doctors.

I hope this gets sorted out soon & you are better!

[Debbie C]

I just saw on the news that taking a teaspoon a day of yellow mustard helps with muscle and joint pain and that many drs. will have NFL players take it along with other athelects. I don't know if that would help you,I ,myself can't stand mustard so it would only make me sick. Also cherry extract was told by my mothers dr. to take for pain

[MikeG-2012]

I just saw on the news that taking a teaspoon a day of yellow mustard helps with muscle and joint pain and that many drs. will have NFL players take it along with other athelects. I don't know if that would help you,I ,myself can't stand mustard so it would only make me sick. Also cherry extract was told by my mothers dr. to take for pain

Thanks for the excuse to go out and have a bratwurst with mustard every day Debra! Wow, you're the best! LOL!

[ingemlb]

Thank you all for your replies and advice. I think we have worked out my pred needs to be increased to address the new and any remaining pain. So starting at lunchtime I will be taking 40 mg of pred a day (up from 25). They will monitor for 2 days then review it. So that should give a quick answer. Its the pain in foot and leg that is causing the problem with walking. We don't know if its inflammation or nerve pain.
So I will still do a bit of walkting to bathroom and kitchen and visiting one of the other patients up the corridor and hope to increase it once pain has been dealt with.
Only downside is having to stay longer here at the hospital. But I was only diagnosed one week ago and so much to learn I would rather have more of a handle on it before going home. So much easier to have tests and see specialists here than once I am back home. Inge

[mishb]

If the increase in pred doesn't fix the pains then it is probably not caused by WG

I'm sorry you have to stay in longer, but as you say, it is better to get everything sorted whilst you are still in there

[JeanMarie]

Is the pain just in one leg? If it is, they might need to rule out a blood clot. Just my thoroughly unscientific thought.