Welp, i just wrote a long comment and it disappeared. Ive been through shoulder surgery for a full rotator cuff repair. My shoulder is 75% better. Some movements are difficult.

Have you had steroid shots? I found them helpful. All i can offer is sympathy!

No advice but most sorry that you are suffering so.

I'm sorry that you are suffering. I don't think it can hurt to see a surgeon to see if they have any solutions to offer that make sense for you. I probably would also try to get a referral to a good physical therapist. There may be some range-of-motion exercises that could improve your situation. If nothing else, maybe the surgeon can recommend a good PT in your area.

I have a sister with MM and have some understanding of what you face. Cant your MM doctor suggest a PT or some such person accustomed to dealing with someone like you? I am so sorry you are having to deal with this. I certainly see no issue with consulting a surgeon. More information is more information

patriciae

Chisue, I am so sorry. I would go ahead with the ortho referral just to see what she/he would suggest. Couldn't hurt to get another opinion. My ortho, for my knees, has been wonderful. I wonder if PT would help along with a medication you can tolerate. I hope you can get some relief sooner rather than later.

Aw....you are all so nice. Thank you.

You'd have to know our history with this primary. She sent DH to the ER twice where the ER doc looked at us like we were crazy for coming in. She's just *overkill*. (Better that than the one who ignored my MM until I was off-the-charts sick.)

I know PT can help in some instances. I did benefit when first diagnosed with scoliosis.

It's pretty tiring to be 'doctoring' all the time. I'm exhausted before I'm even seen. Everything gets to be a Big Deal. I have to think twice about how productive anything will be.

Now I have to have a tooth out -- then 'appliances' (not the kitchen variety).

As a nurse, not your nurse, physical therapy and a pain consult would be my recommendation. since you have mm i assume you are seeing an oncologist so i would discuss with them medications for bone strengthening and ask about high dose Tumeric my husband has MGUS, mm precursor for greater than 15 years, his oncologist/ hematologist noted that studies showed decreased conversion, not helpful for you, and decreased pain and inflammation with tumeric might be worth the ask?

Chisue - you have my condolences. I had a front tooth pulled this week and now I'm wearing a lovely little 'flipper' tooth until the bone graft takes and I can finalize my implant.

I'm sorry you have to deal with the shoulder pain. Like others have already suggested why not try the ortho - maybe injections would help along with PT. I'm assuming because of your MM you get regular blood work. Have you had your Vitamin D levels checked? Vit D helps the body absorb calcium which you need to develop strong healthy bones.

Good luck at the dentist.

Evidently, I *should* have been prescribed a bisphosphonate

I don’t know if someone recommended this or if you have assumed you should have been prescribed this medication. I’ll just say that many have been adversely affected by long-term use of Fosamax by developing femur fractures or necrosis of the jaw bones. It happened to a friend of mine and she has had 2 surgeries after suffering a broken femur and still has not healed properly.

I’m sorry you are dealing with yet another issue and pain. I would do as others have said and go see that orthopedic doctor. As weary as I’m sure you are of going to appointments, you never will know what might help. PT might really do some good. And there may be a newer medication that would help.

You have genuine issues, and that sets you up for 'doctoring'. But if a consult might lead to something that would make you more comfortable, I think it is worth the time and inconvenience. I'm hoping that the time schlepping around is worthwhile for you and the answers you might receive improve your comfort.

I am sorry you have another health isue to deal with. I have no advice to give, but I sympathize with your pain and health issues.

Hope you get so e relief soon.

I have no advice, only consolation, and hope that you fine some relief from pain.

My thoughts are the same as Donna's - wishing you relief.

I'm so sorry to hear about your pain. I remember how surprised I was to find out that you are in your 80's, because your posts often sound like someone young, with a fresh outlook. I understand wanting a break from all of the medical stuff. I wonder if acupuncture would help? It's not covered by Medicare, but I've had excellent results in pain relief for my neck, and I prefer the more holistic perspective.

Thank you all for considering my problems. Your kindness really helps.

Frank Edwards -- It's great that your DH's MGUS has not 'bloomed'. There is a lot of talk recently about starting treatment against MM during that stage, and I'm sure you know that some people never go on to MM. I hadn't been told that I was MGUS and was amazed to discover the MM -- after badgering my primary for help. (My IgG was over 6000; top of normal is 1600.) No wonder I felt like something the cat dragged in! How is turmeric supposed to help?

I get monthly infusions of dartumumab, supported with lenalidomide. In June I had a 'drug holiday'; all that toxicity makes Sue a weary gal. I gained weight and felt marvelous. Now back to the grind.

We quit that primary, and now have Dr. Sky-Is-Falling -- haha.

OP -- My current oncologist said MM patients need bone strengtheners, which I sould have been given from the outset. I got one infusion of Zometa, but the second one made me very sick, and I was, like you, leary of the side effects of such meds. DH does well on a monthly pill -- Fosamax? Maybe we're so old that odds favor improvement over the negative. It makes perfect sense to me that if you strengthen near the joints, the middle of a bone will be stressed.

While in the clinic for my MM infusions, I hear many other women who are there only to get a quick infusion of Zometa. I'm there for hours; they are in and out.

All -- OK, I'll make an appointment with a bone doc. I might be able to see someone before Christmas.

maire_cate -- I take D3 daily -- and B-12 (delicious little gummy). Other than those and my MM stuff, my only other med is Advair for asthma -- the necessary steroid that *causes* bone loss. However, one has to be able to breathe!

Jupidupi -- Thank you for the compliment. I try not to be the Complaining Old Lady. I had not considered acupuncture. I do talk to the Pain Meds section of the oncology department, and they have brought that up in the past.

BTW -- The previous administration's cap on prescription drug costs under Medicare has been a huge relief. Lenalidomide is $18,000 a month. When the change kicked in this year, it capped OOP for prescription meds at $2,000. Now, after paying $2K in January, all my meds are free.

I'm sorry you are going through yet another bout of doctors . I know nothing about MM, but with your shoulder issues, why not first try physical therapy? I'm with you about surgery on a person in their 80s. I hope you can remedy this problem. You're a brave lady.

Chisue my understanding is tgat the active ingredient of tumeric is curcumin some studies have shown that curcumin inhibits the inflammatory pathways and as such decreasing pain apparently in a study reduced joint pain and swelling arthritis as much as ibuprofen his hematologist noted to us that cytokines that are triggered / trigger in inflammation are thought to be a partial cause of conversion to mm is he one of those that wont convert at all or is the curcumin helping we dont know but worth its cost to us Of course you woukd need to check for interactions with any of your meds and other supplements

He said "As a nurse, not your nurse ..." a few posts back.

Frank Edwards -- Thanks for explaining your rationale. I don't think turmeric can harm, and if it staves off MM, all the better! My DH takes turmeric -- at my urging. He's also a rare duck whose sodium levels are sometimes deficient, while the rest of us are cautioned to limit salt.

We are each *unique*. I sometimes wonder that anything so complicated as the human body can possibly function. (Bumblebees, anyone?)

Elmer -- No one has presented falsely here, but I understand your reminder.

I’m sorry to hear you're in pain, Chisue.

Humans should be able to grow a nice, new shoulder when they need one. Wearable parts!

I’d like some new feet, knees, shoulders, LS spine, cervical spine, hands and wrists. Also include new and improved hair, hearing (hairs and hammers and drums); teeth. I’d like to order a new chest with size A or no more than B set. I’d like a butt. A longer torso too.

Shoulders are important — we need them to work and to not cause us pain.

And, Chisue, you already have plenty on your plate. Because your shoulders are demineralized, I imagine that you will be very mindful of not falling or doing anything that might cause a fracture.

When are you going to see a shoulder guy? I hope he will be able to come up with something to help. I am so sorry that you are hurting.

FWIW, I saw something recently about turmeric supplements affecting the liver - not in a good way.

I have real issues with one shoulder, osteoarthritis, torn rotator cuff, you name it. For a whole lot of reasons I'm not looking at surgery, but do have two programs from physios - one for dry land, so to speak, and the other for hydrotherapy. I also have some exercises from my tai chi past that focus on the shoulders. The various exercises are not curing anything, but do seem to help with maintaining the status quo, so I'd recommend seeing what a good physio can do to help. The real value of physios, though, is the program they give you, not the short term, feel good massage/manipulation. The follow through on the program is what matters.

@carolb_w_fl_coastal_9/10 a very good point about liver function. The liver and kidneys and lymphatic systems are our filtration . . Just as any filtration system can get overloaded so can the body’s . Supplements of herbs and vitamins are sold ” willynilly” over the counter with no restrictions and few or no warnings. If a little is good a lot must be better. A couple of these and a few of this and that all harmless herbs . Not true and not safe.

The only overdose one should be using is caution . Particularly as age increases bodily functions decrease .

News Bulletin: Sue got her Holter monitor today, and while at the hospital, was able to make an appointment for August 28 with someone who is probably the newest hire on the osteo team. (I was only able to do this *In Person AT the Hospital* after having no success getting through to anyone by phone.) I hope she will be able to help, or perhaps pass me along to an osteo with more experience.

That’s wonderful to hear, Chisue! You are such a silent sufferer- I wish I could emmulate you when the next issue comes up for me but alas, I seem to love to complain. I wish you the best possible outcome with this lucky? appointment.

A young, enthusiastic PN in the Sports Medicine division (pause here to laugh) commiserated with me and gave me a handfull of PT exercise printouts. She said to feel free to drop them in a bin on the way out, and that the pain will ebb and flow. The Xrays show it's "arthritis". Each socket is destroying itself, and...there you have it. Manage the pain. Keep taking the T4 every four hours, up to six in 24 hours. Well...there's no mystery here. It's age. Buck Up.

When I'm at the hospital I look at all the lame and the halt and think how many of them would have been dead for at least twenty years without today's medicines -- and pain killers. We aren't *pretty* but somebody is glad each of us is still here.

somebody is glad each of us is still here.

We're all glad that you are here. We just wish you were not in pain, and hope that some anwers can be found to help you.

A friend of mine, her DH had MM and he lived for 15 years after the diagnosis.

If not wanting to see an orthopedist, what about a pain clinic?

Thanks for your thoughts.

The pain clinic at the cancer center prescribed the T4 and would gladly give me dilaudid, but I'd rather hold that in reserve for another day. The ortho center also has a pain clinic.

kathyg -- I was diagnosed with MM in 2018; progosis was 6 - 10 years. IDK how much this blood cancer has affected my bones. I've required Advair (steroid) for asthma for forty years; that's more likely the bone thinner here. Yes, every 'helping med' has it's reverse 'bad side'.