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Mom drugged up and still in too much pain
My mom was diagnosed with multiple myeloma two weeks ago. She has been having severe muscle cramping in her back, sides, and ribs since she began treatment last week. They have had her on morphine, hydrocodone, and ativan for pain for nearly a week. She is so drugged up that she's wetting her pants, slurring her words, sleeping constantly, and still crying out in pain. She can barely walk! They keep telling us to keep her on the meds. Does this sound normal? She was laughing, cleaning house, and going to the store two weeks ago. Is severe muscle cramping a symptom of the Velcade, dexamethasone, Revlimid, or that IV bone strengthener? She also has sarcoidosis.
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Tina M - Name: Tina M
- Who do you know with myeloma?: Mom
- When were you/they diagnosed?: March 14, 2013
- Age at diagnosis: 66
Re: Mom drugged up and still in too much pain
I was in your shoes two years ago when my Dad's spine collapsed due to multiple myeloma. The compression fracture can be overwhelmingly painful; when it collapses it can hit and pinch the nearby nerves.
Painkillers are only temporary. The mess must be fixed in order for the pain to go away. In my Dad's case, he had a procedure called kyphoplasty, where his spine is injected with some type of cement that hardens. We were lucky that no nerves were pinched due to the fracture.
Has your Mom done MRI or any other types of bone scans? Good docs should know multiple myeloma eats away the bones and causes bone lesions (considering she's been diagnosed with multiple myeloma). As far as the meds go, we have never experienced such intolerable pain, although Dad complains about bone pain after Zometa IV (the bone strengthener). He can get it by without even OTC painkillers, although it makes him sweat, sometimes.
I wish your Mom well. Be patient!
Painkillers are only temporary. The mess must be fixed in order for the pain to go away. In my Dad's case, he had a procedure called kyphoplasty, where his spine is injected with some type of cement that hardens. We were lucky that no nerves were pinched due to the fracture.
Has your Mom done MRI or any other types of bone scans? Good docs should know multiple myeloma eats away the bones and causes bone lesions (considering she's been diagnosed with multiple myeloma). As far as the meds go, we have never experienced such intolerable pain, although Dad complains about bone pain after Zometa IV (the bone strengthener). He can get it by without even OTC painkillers, although it makes him sweat, sometimes.
I wish your Mom well. Be patient!
Re: Mom drugged up and still in too much pain
I'm really sorry to hear about all the pain your mother is experiencing, Tina.
Cramping is a common side effect of treatment with Revlimid. There are a couple of discussions here in the forum about cramping and what you can do to get rid of it. Here's a link to a search that brings up three separate discussions that might be helpful to you.
http://tinyurl.com/coue7r5
Personally, I've found potassium supplements (which you can buy even at Wal-Mart), and pickle juice (yes, pickle juice) to be helpful with cramps.
One thing you may want to consider is calling the oncology nurse at the doctor's office or treatment center where your mother is being treated, and discuss the symptoms that you're seeing with the nurse. They should be able to give you some pointers specific to your mother's case about how to get rid of the cramping in a way that won't interfere with your mother's treatment.
Cramping is a common side effect of treatment with Revlimid. There are a couple of discussions here in the forum about cramping and what you can do to get rid of it. Here's a link to a search that brings up three separate discussions that might be helpful to you.
http://tinyurl.com/coue7r5
Personally, I've found potassium supplements (which you can buy even at Wal-Mart), and pickle juice (yes, pickle juice) to be helpful with cramps.
One thing you may want to consider is calling the oncology nurse at the doctor's office or treatment center where your mother is being treated, and discuss the symptoms that you're seeing with the nurse. They should be able to give you some pointers specific to your mother's case about how to get rid of the cramping in a way that won't interfere with your mother's treatment.
Re: Mom drugged up and still in too much pain
Last summer, my mom ran into an entertainment center and hurt her shoulder. After a few weeks, she finally went to her primary (nurse practitioner) who took an x-ray and said it didn't look fractured or dislocated. She sent her home with pain meds and a sling. The pain did get better, but not completely. They said it was probably her osteoporosis and arthritis.
She began slowing down and getting fatigued after Christmas. Then in March, she was sitting at the computer and her elbow slid off the keyboard tray. The motion set her shoulder on fire. The pain was so bad my dad took her to he ER. After x-rays of the shoulder, doctors and nurses started coming in very concerned and kept telling her to go to see her doctor first thing in the morning. They only told her that she had multiple bone lesions and excessive calcium in her blood.
The next morning the nurse practitioner told her she most likely has multiple myeloma and set her up an appointment to have a bone marrow biopsy and had 24 x-rays taken. She also set up an appointment with an oncologist.
The oncologist said she has Multiple Myeloma stage 2, her plasma cells were 50% in her bone marrow, calcium was too high, kidneys are ok (after 24 hour collection) and FISH analysis was not back yet. She has punched out lesions all over her body, including her skull. Her shoulders, arms, legs, and pelvis look moth eaten. She started her on Radiation for the shoulder, Dexamethasone, Revlimid, Velcade, and Acyclovir, and once a month IV of Zometa.
She had to have a CT scan of her shoulder before radiation. They found a strange black mass growing out of her shoulder that they have never seen before. She has had 4 radiation treatments and her shoulder is feeling better. All of her pain right now is due to the severe muscle spasms she is having in her back and ribs in the front. The pain meds do not help, the doctor won't see her until the 9th, the nurse says to stay on the pain meds around the clock. She's miserable, drooling, can't see straight, can't walk, can't stay awake, and can't control her bladder on all these narcotics and relaxers.
She wasn't like his before chemo started last week. She went to the casino the weekend before, was cooking, getting on her games, doing a puzzle, going shopping, telling jokes, cleaning house...Do they really expect her to stay doped up and in pain and do nothing for 3-6 months but vegetate in bed? This isn't a typical case of a little bit of cramping! I have to go in my room and cry so many times during the day. I'm falling apart emotionally and my dad is close behind.
Ok..The nurse said she will see her today. The nurse, not the doctor. Will let you know what they say. I am going to ask about the magnesium and electrolytes. Thank you soooo much for replying! I don't feel so alone now!
She began slowing down and getting fatigued after Christmas. Then in March, she was sitting at the computer and her elbow slid off the keyboard tray. The motion set her shoulder on fire. The pain was so bad my dad took her to he ER. After x-rays of the shoulder, doctors and nurses started coming in very concerned and kept telling her to go to see her doctor first thing in the morning. They only told her that she had multiple bone lesions and excessive calcium in her blood.
The next morning the nurse practitioner told her she most likely has multiple myeloma and set her up an appointment to have a bone marrow biopsy and had 24 x-rays taken. She also set up an appointment with an oncologist.
The oncologist said she has Multiple Myeloma stage 2, her plasma cells were 50% in her bone marrow, calcium was too high, kidneys are ok (after 24 hour collection) and FISH analysis was not back yet. She has punched out lesions all over her body, including her skull. Her shoulders, arms, legs, and pelvis look moth eaten. She started her on Radiation for the shoulder, Dexamethasone, Revlimid, Velcade, and Acyclovir, and once a month IV of Zometa.
She had to have a CT scan of her shoulder before radiation. They found a strange black mass growing out of her shoulder that they have never seen before. She has had 4 radiation treatments and her shoulder is feeling better. All of her pain right now is due to the severe muscle spasms she is having in her back and ribs in the front. The pain meds do not help, the doctor won't see her until the 9th, the nurse says to stay on the pain meds around the clock. She's miserable, drooling, can't see straight, can't walk, can't stay awake, and can't control her bladder on all these narcotics and relaxers.
She wasn't like his before chemo started last week. She went to the casino the weekend before, was cooking, getting on her games, doing a puzzle, going shopping, telling jokes, cleaning house...Do they really expect her to stay doped up and in pain and do nothing for 3-6 months but vegetate in bed? This isn't a typical case of a little bit of cramping! I have to go in my room and cry so many times during the day. I'm falling apart emotionally and my dad is close behind.
Ok..The nurse said she will see her today. The nurse, not the doctor. Will let you know what they say. I am going to ask about the magnesium and electrolytes. Thank you soooo much for replying! I don't feel so alone now!
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Tina M - Name: Tina M
- Who do you know with myeloma?: Mom
- When were you/they diagnosed?: March 14, 2013
- Age at diagnosis: 66
Re: Mom drugged up and still in too much pain
I just want to add to TerryH's pickle juice recommendation. It really works! My sig other was screaming in pain from muscle cramps in his legs. Pickle juice worked almost immediately. I'm not sure of the amount, but I think he drank a couple of the little 3 oz. paper cups full, just to be sure.
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Denise H
Re: Mom drugged up and still in too much pain
We went in today to see the oncology nurse. After telling her what was happening, she went to talk to the doctor who then wanted to do blood work. Her calcium and sodium levels had dropped, so they started an IV to add it back in. After seeing how much pain she's in and how "drugged" and out of it she is, they decided to stop chemo until she's better. Wiyhin 2 hours of finishing the calcium and sodium drip, her muscle contractions stopped. At 8:00 tonight, she started feeling chilled. I took her temp. and it's 100.1 orally. We aren't supposed to call unless it goes up to 100.5 or higher.
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Tina M - Name: Tina M
- Who do you know with myeloma?: Mom
- When were you/they diagnosed?: March 14, 2013
- Age at diagnosis: 66
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