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My mom is now 77 and continues to be extremely sedentary, still suffering from generalized fibromyalgia-type pain, and her lifestyle has not really changed since the last time I wrote about her. She continues to be prescribed tramadol for her pain issues, which she claims doesn't help. She claims no pain medication of any kind helps her. She refuses to do any walking or even gentle standing exercises until she achieves her holy grail, which is a knee replacement, as she blames her bad knee for all her mobility issues. (She had other knee replaced 10 years ago, but she is NOT in the same physical condition she was then and I am afraid she will do poorly with the physical therapy this time.) I think she has much more of a systemic mobility breakdown due to the sedentary habit. I think she needs to be treated for anxiety and depression, and also have a physical therapist come to the house to assist her with a mobility plan, but I don't think her doctor has ever discussed this with her at all. (It doesn't help that she considers it insulting that anyone would want her to talk to a "shrink" and won't consider it.) I want to know the best way to have some kind of conversation with her doctor about my concerns. Is that even possible?

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"...her holy grail, which is a knee replacement..."

How funny! The Holy Grail...

You can talk with the doctor(s) and provide your insights about behavior, your observations and thoughts. Unless you have some kind of POA or medical release, they can't discuss her condition or treatment, but your input should be welcome. If you have medical POA or release, you could discuss potential treatments and how they might help.

I lost count how many times my mother would rub her knees and say she needed to have her knees "done." Years of this! She never did go to anyone about it.

So, fast forward to age 90+ and dementia... I think it was year 2 in MC she was moaning and wailing about leg pain. Regular doc Rxed (facility requires doc orders, even for OTC stuff) multiple dosed of Extra-strength Tylenol and multiple doses of ibuprofen. It really wasn't helping and I had concerns about her taking that many doses. I did take her to the ER. 4+ hours of agony... for me. On entering, you get the triage. Of course mom says there's nothing wrong. She wouldn't even try to stand in the facility. Here? No problemo! So, we get put in a space to wait for docs and tests. Thus begins the 4 hours of moaning and wailing about the pain. Of course I felt bad for her, but why on entry was there no sign of it? After everything but Xrays, they Rxed Tramadol and that was that. They checked her ability to stand, walk and use toilet - no way without TWO male helpers, but released her anyway!

One staff member says to me I should take her to a clinic. For what? They don't have her records, they can't do any more, probably less, than the ER. So she tries to intimidate me - asking why I wouldn't do anything with her in that pain. People like that do suck.

Anyway, I made appt with ortho. I was able to reschedule even sooner, as that first one was weeks out. I had to do the explaining. I suggested the knee issue was likely behind all this (by this time, NO pain - it was only maybe a few days she was complaining.) So, he had Xrays done and when he came back he told me if she were 20 years younger, we'd be talking surgery. I certainly wasn't about to ask for surgery on a woman over 90 with dementia! But, I suggested an injection. Sometimes one, or even a few of these, can alleviate the pain. I had ever increasing pain and less ability to do things with a cervical disk issue. I agreed to only one injection, as a diagnostic, because otherwise it would mean MANY injections over time. By the time I sat up, minutes later, the pain was gone! I still wouldn't accept this as "treatment" as I was not that old then, and over time could do more damage if the pain wasn't there to prevent me from doing things. It didn't last 3 months, but by then the doc was on board and surgery took care of it. Although mom wasn't in pain (or at least not exhibiting pain) at that time, I thought it best to give it a try to ward off any future issues. She was more afraid of the needle than anything! Funny thing is she didn't even flinch when it was done.

So, perhaps some discussion around trying an injection might work. Tell her it's better than surgery, and is a prerequisite, even if it might take a few times to alleviate knee pain.

Certainly not getting up and about is going to lead to less mobility. I'm convinced that was part of mom's problem. During her last months, up to maybe a year, she refused to stand or walk unassisted. It was likely a combination of NOT walking which led to weakness which then led to fear of falling. She spent those last months in a wheelchair. She tended to sit a lot in her last days at home and also sat a lot at MC. Several other ladies would walk the loop multiple times after meals, walkers and rollators in use! Suggest that to mom? Nope. She would just go back to a table and peruse her sales flyers, read magazines and her Sunday paper.

If you can get an ortho to try this and perhaps get OT/PT ordered, maybe?
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Reply to disgustedtoo
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You can talk to the doctor, but the doctor can’t really talk back unless mother has signed a HIPPA allowing you to be involved in her health records. Most people send a note, sometimes a longish letter, some times a short list of issues that they ask the receptionist to take in just before the appointment (often when they know the doctor will get wrong and misleading answers from the patient).

I have found that Tramadol works better for my ongoing pain issues as a prophylactic (pain preventer), while codeine works better to diminish pain. Both have a 40 minute take-up time when nothing happens. I only take codeine when I need it, although I have a script for up to 6 a day (only once in 10 years got up that high). The newer drugs unfortunately include the real addictive nasties like fentanyl and oxycontin, which I have always turned down.

If you can manage for mother to be referred to a hospital pain clinic, they throw everything at working out what is going on, including the psychological stuff. That might be easier to sell to mother than a ‘shrink’. Good luck to you both!
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Reply to MargaretMcKen
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My Mom and a friend suffered hallucinations from Tramadol. Maybe she needs a pain specialist to teach her how to manage it,

I hear swimming is great for Fibromyalgia. A friend swears by it. This desease can be debilitating and painful. Other deseases can go along with Fibro, Lupus and arthritis are a couple. She should be seeing a specialist not a PCP. Just read that Tramadol is used for the pain but there are new meds out that may be better.
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Reply to JoAnn29
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It’s sad that many people are not open to therapy. They don’t understand it. They don’t believe it will help.

Pain is debilitating mentally and physically. Are you completely satisfied with this doctor? If you aren’t, seek another opinion.

You could privately write a letter to her doctor to express your concerns.

Best of luck to you and your mom.
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Reply to NeedHelpWithMom
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