Apparently it’s a difficult time!

JC5

Actually posting a lot this week! Feel like I can’t deal. DH still complaining of leg pain but won’t go see doctor just wants to grimace , moan, complain, and shut down and make it difficult to help him! I have not been so understanding as I know I am doing everything and just been crying and becoming a person I don’t recognize! Don’t want him to go down that rabbit hole and take me with him! What do I do? I miss me!

PookieBlue

JC5

My heart goes out to you. I know you are doing everything you can for your DH. It is so hard not to lose ourselves and just think of ourselves as being melded into our spouse. This disease forever changes us. Yesterday was our 35th wedding anniversary. Today, my DH asked me who I was married to. He believes he is not married. He acknowledged his confusion today, but says it is probably because of all the traveling we’ve been doing. We haven’t gone anywhere since last Spring. He travels into an alternate universe frequently.

Quilting brings calm

JC5

Can you use a patient portal with his doctor’s office  to communicate with his doctor?  Given the time of year and the fact that the triple pandemic is going on, you might get the doctor to do something without seeing him.   The leg pain could be from a statin even if he’s been on it a while.  My spouse finally had to stop taking his as it made his neuropathy and restless leg syndrome worse.   My Mom ( PWD) finally got to see a neuropathy specialist after a long long wait.  She is now on 300mg gabapentin 3 times daily.  

If his doctor requires a visit, you could lie to your spouse and say it’s for you, but the nurse says he had to accompany you because they might need info from him.  You can communicate that fib via the portal too. 

Ed1937

JC, quilting wrote a good post that I agree with. That might be the best way to get him to see a doc.

I know you miss your old self. You've been under a lot of stress, but the old you will show up again. Sorry it's so hard.

M5M

My attention is on the comment  about statins and leg pain. DH has knee replacement but continues to complain about the same knee pain as prior to surgery well over a year ago. Can you share any other information on the statin involvement? The doctor has not said that could be involved. What is the pain like?

Quilting brings calm

M5M - my spouse described it as leg cramps in his calves.  Other people describe it as muscle pain or weakness.  It’s a known side affect for some people.  He’d actually complained about this in the past and had been put on niacin and then fenofibrate instead. The PCP ended up putting him back on a statin to better control the cholesterol. His pulmonologist is the one that suggested he cut the statin to twice a week and eventually suggested stopping it.  It has made a difference for him.  Of course, as I mentioned, he already had other leg issues going on.  Now that the statin is gone, his medications for RLS and neuropathy seem to keep up with those ailments much better.  

His pulmonologist is also a sleep disorder  doctor.  My spouse was sent to him when he couldn’t get rid of a cough after several months.  That turned out to be his blood pressure medication, lisinopril.  Once that was changed, no more cough.  He has taken over the RLS and neuropathy treatment from the neurologist.  He has also switched my spouse from a CPAP machine to a BPAP machine after a couple sleep studies.  The improved sleep ( and breathing while asleep) is helping too.  He’s also started him on thyroid meds.  We just love this doctor as he’s concerned about all sorts of things. 

A call to his PCP( or whoever orders the statin) would not hurt.    At this point, maybe the statin is hurting more than it is helping.  

JC5

Good advice as usual. I will get in touch with his doctor and ask about the leg pain. So complicated now. He broke several vertebrae a few months ago now going to outpatient rehab 2x’s a week so difficult to tell if it’s statin related or back ? Will look into it tho. Thanks!