When to worry about pain.
Hey ladies, I could really use some advice or maybe some input as to how you all handle things. When do you feel that pain reaches a level that it is a concern and should be reported to your doctor? I know the two weeks of pain should be reported to your doctor thing, but what kind of pain? What I mean is, do we worry about pain that is severe, pain that is constant, pain that is intensifying? When can we say pain is not something to worry about?
The thing is I am always in pain since I started on Lupron injections and Femara. So how do I know when pain is something I should be concerned about? For example, I have had shoulder pain for about ten months. I went to my MO, and she was not concerned, sent me to PT and a rheumatologist. The pain is definitely better, I would say by about fifty percent. It doesn't hurt very much if I am laying down and the Celebrex the rheumatologist gave me helps quite a bit. However, I still have mild pain about five days a week. Because the pain is not constant, is mild, and has been improving, does that mean I can ignore it? Does mets pain always get worse over time or can it hold steady? Same thing with my hip. It hurt pretty badly for a few weeks, but then got better. Now the pain is mild, some days not there at all, and never there when I lay down, but there are days when it flares up. I'm pretty sure I wouldn't have thought much about either of these issues before cancer. It is not severe and does not interfere with my functioning, in the past I would have ignored it, but cancer has turned me into a hypochondriac.
I have asked my MO, and she says you know your body, and I will order tests if you think they are needed. The thing is, I don't think I really do know my body anymore. Not on these meds anyway. I would not say I am in severe pain, I would call it more discomfort, but something always hurts. Part of me thinks that I should just ask for a scan for the reassurance, but I want to start moving on from cancer and I am never going to do that if I am always having one scan or the other. So what do you do? How do you know? When do you start worrying and when do you just let it go? Sorry for such a long post, but I could really use some advice. I'm making myself miserable and I think that if I had a clear plan that I could start to move on.
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Vera, here's what works for me.
I've had oesteoarthritis for 20+ years (and I'm only 64) and I know from my last spinal x-ray that every vertebrae in my back has some degree of deterioration, whether mild or more. With OA throughout my spine, it means that I can get pain or numbness anywhere. I also often get OA flares up in various joints - my wrist, my fingers, etc.. I pretty much always have at least mild pain somewhere. Since I don't want to freak out over it all the time, and I don't want to constantly be going for x-rays, I've developed my own routine for dealing with new pains that arise.
Most normal muscular or degenerative pain reacts to certain corrective behaviours - hot or cold compresses, rest and limiting mobility, proper exercise. What I've read is that the point at which you should get something checked out is if it's not starting to react positively to these corrective changes within a couple of weeks.
A few months back, I started to get hip pain - that was new; my hip was never an area where I'd had pain before. It happened that I had a tele-appointment with my PCP, and when I mentioned the hip pain, she offered that I could get an x-ray if I wanted. I said that I'd rather give it a few weeks. So I looked at my activities to see if something I was doing might be causing the pain. Over time I'd been increasing my speed and incline on the treadmill. Because it was gradual, I didn't think that was it but then realized that it could be cumulative or maybe I'd just hit the point where it was affecting me. I decided to stay off the treadmill for a few days - and sure enough the hip pain wasn't as constant. But then I went out for what I thought was a gentle walk - and the pain returned. So I took it easy for a few days. Then I got back on the treadmill but at a lower speed and incline, and over a couple of weeks, the pain eased off almost completely. Then I tested it out and now know that if I increase the speed (which I still often do) and particularly the incline (which I no longer do), it causes hip pain. I've also discovered that if I've been using the treadmill regularly but then take a long walk outside or if I've mostly been walking outside but then go onto the treadmill, the change in my gait between the treadmill and outside walking causes hip pain, but only for the first day or two. Now that I know all this, I'm okay if I get hip pain and it doesn't worry me. Cause and effect.
Similarly, my shoulder and neck have been pretty bad lately. It started mild and intermittent and got progressively worse and constant. My OA often affects my neck so at first I didn't think about it but after a few weeks the pain was so bad that it started to worry me. I'm used to doing neck exercises but this time I took more drastic action. I have severely restricted my activity and have been extremely careful with my posture and how and where I sit. It took almost a week but finally the pain started to ease. At first, if I was sitting or standing without neck support for only 10 minutes, the pain would return; now, after a couple of weeks, I can be out for hours and just notice a mild ache and muscle tightening. So again, cause and effect. My shoulder/neck pain is reacting the normal way that arthritis pain should react, so I'm not worried that this is anything but a more severe case of my usual arthritis pain.
I admit that I don't know if cancer pain would also react positively to the right behaviours. It might, but I wouldn't think I would be able to increase and lessen the pain with my behaviours to the extent that I can - once I finally figure out what causes and/or reduces my pain, and once I give some time. So my rule is that if I develop a pain where within 2-3 weeks I can't exert some level of control by my activities & behaviours, and by following the "this is what you do to reduce this type of pain" guidelines, then I see a doctor.
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Thank you Beesie, that’s really helpful. I also have some mild arthritis, which has been intensified with the meds, so that has been something else that has left me feeling confused. I like your way of managing these concerns. My shoulder pain intensifies when I am at the computer and improves with rest. I do see improvement when I manage those two things. I like this way of looking at things. Thank you
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As usual, Beesie has good advise. Something hurts on me somewhere all the time. Not screaming OMG get me morphine pain, just more like OW. Usually a Tylenol or 2 will knock it down. I’ve known for years my lower spine is wrecked. If it increases, I do a medrol pac, that really helps. And then PCP will send me for mri. I think some of it is age, some may be from the meds.
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yes, I try to remind myself that just because I had cancer does not make me immune to other kinds of pain. I've always had it, just didn't focus on it like I do now.
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Yes, our minds do go to dark places now. Still good to pay attention though.
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I just wanted to say I know exactly what you mean and how you feel. You are not a hypochondriac and you are not alone. I’m in the same situation with a new pain and keep fretting over saying something or not. It’s our new world. Thanks for posting, I feel less alone :
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thanks Bessie, this is so helpful😇
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Thanks Lulu. It's hard to accept this as our new normal sometimes. I miss the old days when I never would have given most of these symptoms much thought. I am sorry that you are experiencing pain. It is definitely helpful to talk to other people who understand.
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Thank you Everyone. Reading these posts has been helpful. My wife is Stage 2A, ER/PR positive, Her 2 Negative. Since her June 2019 diagnosis, she has had chemotherapy, radiation and lumpectomy and full axillary dissection (not in that order). She is taking Hormone Therapy now, and has been complaining about pain constantly. It is across the chest, and in her shoulders. She has recently been referred to a rheumatologist. I'm afraid she is getting depressed, and she is frustrated about being in pain all of the time. Glad to know she is not alone. She did Lupron injections and they made her very tired, and Exemestasine (sic?) and that was a disaster.
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Has anyone had popping or cracking joints? If so, have you found anything that helps? I had a chair massage today and that seemed to help with the pain and right muscles. Thanks!
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