It's been over three years now since I have been struggling with The Troublesome Fours, and
I'm currently on a treatment holiday for 2 months and I'm still dealing The Troublesome Fours! They are:
1. Sick Feelings
2. Muscle Weakness
3. Fatigue
4. Pain
This is what I think is happening.
1. Sick Feelings:
Mostly from the myeloma treatment I've had, but now that I've been off treatment for 3 weeks, I think it's acid reflux, maybe from being on treatment for so long, or dexamethasone use. Drinking lots of water and eating a low-fat diet helps.
2. Muscle Weakness
I have so much bone damage and lesions in my spine, ribs, and hip that I shouldn't lift more than 10-20 pounds without risk of increased pain or bone breakage. So without weight bearing activity, my muscles feel weak. Walking and daily lifting objects under 10 pounds helps.
3. Fatigue
Long-term dexamethasone use has caused secondary adrenal insufficiency, so I run out of energy a lot faster as the day goes on unless I take more dexamethasone or caffeine from stay-awake pills, coffee, or soft drinks.
4. Pain
All the bone damage not only causes bone pain, but strains my muscles a lot more, and it hurts when they get tired and tense, especially after the noon hour. Also, the shape of my vertebra has deteriorated from compression fractures, so my back falls out of alignment many times during the day, needing a lie-down stretch. I take tramadol (75 mg, 1.5 pills) for the muscle pain, which takes 2 hours to feel the effects and 8 hours to wear off. So 1 1/2 pills of tramadol at 10 a.m. will be effective from noon to 6 p.m., which gets me through worse pain of the day. Alternately, if I don't want tramadol, I use alcohol and do lie-down stretching to relax my muscles.
Forums
4 posts
• Page 1 of 1
-
Bob_D - Name: Bob_D
- Who do you know with myeloma?: me
- When were you/they diagnosed?: March 2015
- Age at diagnosis: 59
Re: The Troublesome Fours
Bob_D
You are not alone with the “Troublesome Fours”, my friend. They are my constant companions as well.
I was diagnosed in the same month and year as you, and have been through multiple drug treatment regimens as well as an autologous stem cell transplant in April, 2017. Since the transplant, I have enjoyed a stringent complete response (multiple myeloma jargon for “remission”).
But, throughout all the treatments and even now, the Troublesome Fours have been with me. I have trouble describing the sick feeling, beyond labeling it a general, really unpleasant malaise. The worst of it is the bone pain, for which I take Fentanyl (150 mcgs in the form of transdermal patches) and oxycodone (15 mgs). It’s a lot of pain medication (so I can’t drive while on it), and yet it only takes down the bone pain by about 30%.
As I am sure you well know, a clean set of blood readings is nice, but the reason I don’t smile back at my oncologist when he cheerfully reports them is that the Troublesome Fours are as bad as they were when I had high free light chains and other hematological indications of active myeloma. And, after three and one-half years of suffering them, I have really had quite enough!
So allow me to join you in wishing for a way to vanquish them once and for all!
You are not alone with the “Troublesome Fours”, my friend. They are my constant companions as well.
I was diagnosed in the same month and year as you, and have been through multiple drug treatment regimens as well as an autologous stem cell transplant in April, 2017. Since the transplant, I have enjoyed a stringent complete response (multiple myeloma jargon for “remission”).
But, throughout all the treatments and even now, the Troublesome Fours have been with me. I have trouble describing the sick feeling, beyond labeling it a general, really unpleasant malaise. The worst of it is the bone pain, for which I take Fentanyl (150 mcgs in the form of transdermal patches) and oxycodone (15 mgs). It’s a lot of pain medication (so I can’t drive while on it), and yet it only takes down the bone pain by about 30%.
As I am sure you well know, a clean set of blood readings is nice, but the reason I don’t smile back at my oncologist when he cheerfully reports them is that the Troublesome Fours are as bad as they were when I had high free light chains and other hematological indications of active myeloma. And, after three and one-half years of suffering them, I have really had quite enough!
So allow me to join you in wishing for a way to vanquish them once and for all!
-
MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: The Troublesome Fours
1. I developed acid reflux long before the myeloma diagnosis over a year ago from eating 800 mg ibuprofen three times a day for arthritis pain. I take a Levoxyl every morning to control that, and switched to topical diclofenac for the painful areas, Works with the myeloma rib and back pain as well; it's not perfect, but keeps it manageable. Hated the zombification that tramadol brought when first diagnosed, so got off it. No alcohol either. But I won't give up bacon!
2. Lifted my 16 pound cat this morning and caused myself some grief in my lower left hip. Will wait and see. I do have an oncology appointment next week if it remains problematic.
3. Taking naps daily, sometimes two, so can be alert and active (redefined) rest of the day. Learning new limits, like if I plan to do "this and that," know that I will be worn out by the time I get "this" done so "that" will have to wait. My life is smaller, but with plenty of good books to read, writing to do, movies to see, music to hear, critters to watch in our desert oasis, and cooking for my sweetie and me, I'm content.
4. See 1.
And I should mention that I'm often not sure what is the myeloma, what is arthritis, what is the COPD (tho' I quit smoking decades ago), or what is just being 80 years old!
2. Lifted my 16 pound cat this morning and caused myself some grief in my lower left hip. Will wait and see. I do have an oncology appointment next week if it remains problematic.
3. Taking naps daily, sometimes two, so can be alert and active (redefined) rest of the day. Learning new limits, like if I plan to do "this and that," know that I will be worn out by the time I get "this" done so "that" will have to wait. My life is smaller, but with plenty of good books to read, writing to do, movies to see, music to hear, critters to watch in our desert oasis, and cooking for my sweetie and me, I'm content.
4. See 1.
And I should mention that I'm often not sure what is the myeloma, what is arthritis, what is the COPD (tho' I quit smoking decades ago), or what is just being 80 years old!
-
albertlannon - Name: Albert Lannon
- Who do you know with myeloma?: self
- When were you/they diagnosed?: June, 2017
- Age at diagnosis: 79
Re: The Troublesome Fours
Correction: The Levoxyl is for low thyroid. It's lansoprazole (Prevacid) for the acid reflux. And this is the default conversation of old folks: our medications!
-
albertlannon - Name: Albert Lannon
- Who do you know with myeloma?: self
- When were you/they diagnosed?: June, 2017
- Age at diagnosis: 79
4 posts
• Page 1 of 1