As my bio shows, I have been fighting the beast for 20 years. The Lord has blessed me with an extended life. My PSA is still around 35 and my ALP is 180. I feel great from the waist up. Starting pluvicto April 7th.
My question is this - every time I try to walk more than a block or stay on my feet for longer than 30 minutes, my feet begin to burn, and I get cramps in my calves, and charlie horses in my thighs and glutes. It started about three months ago. I know I have neuropathy in my feet - that started after my chemotherapy two years ago. I have had cardio tests and lower leg vascular tests proved no problem. Monday, I'm having an MRI done on my back to see if I have some kind of a blockage to my blood flow and my lower extremities.
Have any of you had these symptoms and have you had any success in getting rid of them. Thanks so much for your input.
Ive been battling this disease a while too and there was a period a while back where I experienced muscle cramping in lower spine, and down through legs, similar to what you describe however, I didn't then nor do I now have neuropathy...
For me, I gained relief by squatting, wherever I was that it occurred, even when walking through a supermarket...
I thought it may have been lack of circulation so I increased stair climbing, squats and riding my pedal bike but what seemed to be most effective was regular hot Epsom baths... FWIW, I hope this may help. 🙏✝️
Have you had any imaging lately? The cancer can affect your nerves and muscles as well as bones. My last scan showed intrusion into the muscle, I get all kinds of strange pains in various places that come and go.
I had a PSMA about 60 days ago and it all it showed was my bone meds and nothing else. Now that I’m going to start play video I will get scans every six weeks. I will give my doctor a heads up. Sure appreciate your feedback Tom.
I have no idea if this would work for your charley horses, but a member of my FB support group posted a similar question last week. Another member commented that she swears by a product she buys on Amazon. It's called "NOW Solutions, Magnesium Topical Spray." It likely won't help the neuropathy, but if it were to help with one or two of the negatives...
Hey tce! Congrats on 20 yrs . That is some kind of miracle here . 400 magnesium is recommended for neauropathy. I have it severely myself . I started magnesium a month ago . My MO just recommended me alpha lipoic acid also . I started a week ago .1800 mgs … per day .. I know nutrients must be loaded up and on for a while to take effect . These are both cheap to take . I’ll let you know in three months. if better . A massage now and then helps everything . Also a hot 102 bath with magnesium flakes will help sleep and pain for many days afterwards . Recumbent bike and the hand pedi bike daily can help blood flow . Many are on gabapentin and many other drugs for this . Good luck Sir!
• in reply to
Thanks Slimpicken:
We are all in this battle together. I just started taking 4500 MG of magnesium taurate a week ago. I still have some R Alpha Lipoic Acid 600 milligrams that I will start. I will try your recommendation for 1800 milligrams and see how that goes. Yes starting pluvicto on the 7th of April. I was very worried that I wouldn't get started because of the shortage but Mayo Phoenix got me in. Where is you MO????
I can't tell you enough how much how much I appreciate your input.
God bless you - Tom.
• in reply to
Hello Slimpicken:
I started my 400 MG's of magnesium yesterday as well as beginning the 1800 mg's of R Alpha lipoic acid. 1800 seems like a lot, are you sure that is not too much. Appreciate your input. I hope it works. This is driving me crazy. I can't walk very far, play golf, or work in the yard very long. have a great day. Tom
Have you started a statin recently? My neighbor had horrible leg cramps and charlie horses with statins.
• in reply to
Thanks
I do take avostatin for cholesterol.
but I’ve been taking it for years. This started three months ago.
This sounds crazy, but I was advised to eat a few handfuls of peanuts during the evening to stop night cramps in the feet and calves. It's worked, nuts isn't it 😊. I wish you another 20 years, if you want them.
2 things come to mind. Claudication which is vascular insufficiency and spinal stenosis. Vascular claudication won’t be effected by position. You would get it riding a bike. It is quite predictable happening when the muscles have done a specific amount of work. Spinal stenosis is caused by erect posture and is often relieved by bending over. Really sounds most like vascular insufficiency.
Grandpa4 states the most likely causes including Peripheral Artery Disease vs spinal stenosis or spinal nerve compression. The link below provides a good overview and summary of approaches. One medication that can help improve circulation in addition to the other measures discussed is Cilostazol.
Thanks Mateo - I will have my doctor prescribe it for me It sounds like it could really work. Always appreciate your candid feedback and knowledge.. Tom
I had neuropathy in my leg from the hip to my foot. Shooting pain that would come out of nowhere. My doc prescribed gabapentin ( I take it at night) and it completely disappeared.
What is your daily dose of gabapentin? My doc upped mine from 900 to 1800 a day and it seemed to make a difference in relief from the effects of nerve compression that is messing with the left side of my face.
I was taking that and my doc added another 600 at midday, to make 1800 total. I can't say for sure what it is doing, but I missed taking two pill one day and can say my headache/jaw-ache was a bit worse than usual.
Another doc told me that oxycodone is not as effective as gabapentin at controlling neuropathic pain and other pain and discomfort that is nerve-related. (Oxy would be better for pain directly from bone mets, for example.)
Clinical studies referenced in the package insert state that efficacy for a range of doses from 1,800 mg/day to 3,600 mg/day were observed; however, there was no additional benefit seen with doses greater than 1,800 mg/d. Still, it is not uncommon for some conditions to get prescribed that 3600, or something in between like 2400.
The fact that there is evidence of more benefit at 1800 than 1200 is something you should discuss with your doc.
I had debilitating thigh cramps after exercise. SBRT to a spinal met mostly stopped them. Foot issues complicated by swelling that accompanied ankle replacement surgery.
I have had extremities feel like broken feet, arthritic hands with luperide 6 mo shot, when I changed Dr, switched to 3 month shot and symptoms disappeared. They have returned in force as I am weened off ADT in preparation for PMSA scan. Have mets in pelvis, but bone and CT Scans show no other locations. Hopefully, pmsa scan won't show other and we can focus on localized mets.
My feet hurt like a M.F. my thighs hurt like a M.F. my everything hurts like a M.F. When I get on my knees to kiss my wife's feet, I can't get up since my thighs give up, damn M.F..............
I've had Neuropathy for years..... treated with Gabapentin (some relief)..... I've lost my balance M.F. I can't stand his M.F. Pca...............
thanks John. The minute I walk close to one block my feet my legs and my thighs feel like an MF I take 1200 MG’s of gabapentin but I really don’t think it helps much. Sure appreciate your input. Keep smiling Tom.
I am 23 years out from diagnosis and those symptoms have plagued me as well. I have found that Hylands Leg Cramp and Evening leg cramp will eliminate them quickly and Lymphatic Drain massage can keep them at bay for almost a week.
I have had some relief from a TENS unit. It has a massage mode that has helped relieve my nueropathy. Had foot xrays and MRI of back and neck. Tried cortisone shots in my lower spin that did absolutely nothing. Gabapentin did not help either. Some relief with Lipoic acid. I have tried some L4/L5 therapy exercises which seem to help. The neuropathy definitely impacting my balance.
Unfortunately - I've had all of those symptoms (and perhaps a few additional ones) and have not achieved much success in eliminating them. Although I've tried..
The burning feet, leg cramps (charlie-horse) etc, recurrent pain on walking or standing for any period of time - can all be caused by three basic issues - neuropathy from diabetes (nerve damage basically) or lack of oxygen in your extremities, or damage to the spinal cord caused by a bad back. Or all of these. Mine is all of the above.
I've always - since a child - had cold feet.
From Thanksgiving to Easter I sleep with a small heating pad under the sheets for my feet. It's on the lowest setting - but that's enough to make sleep possible. The issue is circulatory. I have seen cardiologists and vein specialists to try to address this - and ended up with 3 stents in arteries in my legs to try to address this issue. The circulation is better - but the pain continues.
Do a search on peripheral artery disease (PAD) for lots of info on this issue.
I had the stents done in the hopes of avoiding progressing to where my father got to just before he passed - where amputation was being considered for gangrene in one of his feet. So far it has achieved that -- the circulation appears OK, but the damage to the nerves was probably already advanced enough that improved circulation didn't help.
The burning and pain, numbness - can partially be explained by the nerve damage - neuropathy. FWIW - I'm not diabetic - but do fall into the "pre-diabetic" category, and have been there for years.
Intermittent claudication is the name for oxygen insufficiency in the legs, and is primarily caused by artery blockage, It's indicated by the need to stop and rest for a short time due to pain for every XX minutes spent walking. The XX has gotten shorter though the years, despite the stents.
I am sorry that I don't have good news for you on these issues. I've seen physiatrists, physical therapists, pain doctors - none of whom provided any lasting improvements. The leg and foot issues are exacerbated by long-term back issues (basically my lower back looks like part of a pretzel) which flare up intermittently.
It's actually rather depressing but I try my best to continue to do what I can do as much as I can..
Good luck, if you find a miracle cure please remember to tell us all.
Thanks so much Don for your input. I just had my back MRI yesterday and have not and have not yet received the results. I so appreciate all of our fellow warriors on this site for their for their significant input on my issues. I have now been battling the beast for 20 years and been active on this site for 10. thank you wonderful brothers for your input on everything any of us have to ask. Thanks Tom
Atorvastatin - been taking it for about 20 years... hmmm... and have had pain issues for about 20 years. My understanding it causes muscle pain - but not quite like PAD does. I'd be interested in hearing if anyone else has tried discontinuing the statins...
Looked on Dr. Google for "statin pain" - and found:
medicalnewstoday.com/articl... "New research suggests that muscle weakness and related side effects that can arise from statin use is likely due to the drug’s effect on the energy production centers, or mitochondria, of muscle cells."
cnn.com/2022/08/29/health/s... "Many patients stop taking statins because of muscle pain, but statins aren’t causing it, new study says"
So - damned if you do, damned if you don't sort of thing..
Thanks Don - hard to know who to believe.. Thanks for your input. Tom
Curious. My last pluvicto treatment coming up. I've been getting serious aches in lower quads over last 6 wk. If I walk couple miles, the night is a bit rough. My MO said may be related to pluvicto. ? Going to see RO next week and maybe get scan to if it's mets.
Mine feels like ran hillwork. And stamina is low, I attribute this to low Hb, mine about 10. Before pluvicto it was about 12. Feels like climbing Mt Everest sometimes!
Man do I ever know that feeling. My hemoglobin is also about 10 and I start pluvicto next week. Thanks so much for getting back to me Tom.
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