Greetings everyone. I was diagnosed in 2020, and put on Prostap. The aggressive adencarcinoma was confirmed after PSA 257and biopsy, although the only symptoms were a bit of blood in the urine occasionally. and scans indicate it has not spread. No blood since going on Prostap, and no prostate symptoms either as far as I can tell, and PSA down to 1.5 But I developed quite severe abdominal pains last may, that largely prevented me going out, but eased a bit if I lay down or sat still. Scans and x rays organised by the GP showed normal for pancreas, intestines, spleen, liver, gall bladder, kidneys etc, but I see that Prostap does have a reputation of weakening muscles. I also have Bronchiectasis that causes a lot of coughing, that does not do the muscles much good either - Has anyone else come across this? Initially, I did mention it to the cancer consultant who just told me to see the GP as she didn't think it was prostate related! The only advice I have had was to take paracetamol, but no more than 8 a day. I ended up taking 56 a week, and they kept the pain away, but I still didn't like the idea of taking so many.
This had gone on for so long that I have now started looking for a cure myself. Two months ago, I decided to try a gluten-free diet, and less than 24 hours after starting, the abdominal pains disappeared, so no more paracetamol at all required since then. But the muscles inside my body feel very strained and sore if I walk or move about, so I still cannot go very far if it involves walking. I am OK in the supermarket where I have the support of the trolley.
I am now thinking of trying D-Ribose that has a good record of strengthening muscles. I cannot find anyone else with these symptoms. I sleep OK, because pain goes completely when in bed. I am losing a bit of weight, but feel that may be due to stopping eating wheat products. I am aged 79, male and currently weigh 57.9 kilos.
If I could get rid of the pain when walking or moving about, I would feel great. It is not severe, but is very distracting, and very uncomfortable.
Any ideas anyone please?
Try mild exercise working up slowly - this should strengthen the muscles and at least stop you loosing more strength. I exercised all the way through my HT and RT cirvuits in the gym at least 4 times a week more often every day, and am thankful that I did as it helped with all the side effects from prostrap and RT - helped with fatigue, hot flushes and only put on about 4lbs or so - a little extra tummy fat and no msucle wastage.
Thanks, but it is not as easy as that. I am now only three months off age 80. Exercise has been suggested already to "try and get fit" I am not overweight, and all my joints in arms and legs are pretty good and pain free. But even walking a few yards unsupported gives muscle pain in chest and abdomen, but if I have a supermarket trolley in front of me, it is nowhere near as bad. I have had a very active life of more than 30 years at sea. I have just started the D Ribose, so hoping that will work -
Hi
As regards the bladder situation, I was put forward by my doctor to see the gastro dept, there I had some scans, like you they showed nothing apart from my prostate had shrunk a little. I asked about this in case it was pressing against my bladder or intestines it was not.
At present I see a nurse and after certain tests, she has given me some physio to strengthen my muscles in my bottom. I’ve been on prostap for over seven years, it still gives me hot sweats not to bad also tired, but that could be other medication I take.
Like you I take pain killers either two codiene and liquid paracetamol or two co codormol four times daily. Walking is a devil, as my knees are shot, bits of bone floating around, plus back pain can go from painfull to severe depending on the day, some good some not so.
Stay safe
Joe
Hi Joe,
As I said above, I got rid of the bulk of the pain by simply going on a gluten-free diet. At the end of the 2nd day, the pains had gone, and now I only have the muscle pains when I walk or do anything strenuous. Sitting still or lying down, it goes completely. The gluten-free diet only involved my changing to GF bread and things like GF chocolate biscuits or other chocolate products, readily availabe in supermarkets in the Free From section - .
Bob
Do you use a walker - I mean the type like a zimmer on wheels. Its what I used for a year prior to my total knee replacement in 2019 - even went on country side walks with it. My wife had difficulty getting it through/over some "kissing gates" but it worked well. I turned 80 in October and now find breathlessness on some walks a problem but still go to the gym and on my walks. I have chronic back and neck pain and because of Atrial Fibrillation I can no longer take the best pain killers and anti inflammatories like NSAID's so rely on paracetamol too, frequently taking the full dosage of 8 a day if I want to carry on doing the things I have usually done in relative comfort because paracetamol doesn't work as well so still in some pain. Have done this now for nearly 8 years. I consulted with a dietician and tried removing various things from my diet and then slowly re-introducing them into my diet but it appeared that for me there was nothing in the food line causing any of my problems so still plodding on. Good Luck with the D Ribose and hope it works for you.
No, I don't use a walker, but using the trolley in supermarkets is a great help. When summer comes, I may try short walks unaided, but am reluctant to be seen out with a walker because I feel that in these modern times, it would make me more vulnerable to potential muggers. I can walk with apparent normality to observers, it is just that I get the muscle pain with it. Since going gluten free, I don't need to take paracetamols and have no pain at all when sitting or lying down. This allows me to enjoy my old hobbies of writing and technical drawing. I believe that I had two distinctly separate pains, the abdominal ones, and the muscular ones. But the recovery from the abdominal pains when I went gluten free was remarkable - anout 24 hours, and that was two months ago, and they have not returned. I am now concentrating on the muscle pains, starting with th D Ribose - 5 grams, three times a day with meals. I don't think the various departments at the hospital liase with each other at all. The chest clinic- says "not in our field, see you GP." The cancer clinic says "not in our field, see your GP." The GP has just referred my for blood tests, scans, x-rays etc, none of which have revealed anything, and has only suggested paracetamol. But as I have got rid of the abdominal pains by my own reasearch, I am hopeful of solving the muscle pains by my own efforts as well. At the ago of almost 80, I guess it doesn't matter all that much.
Cambrian, welcome to our club.
I was disturbed by two comments. Firstly, ‘at 79 I guess it doesn’t matter at all’. Your life does matter and hopefully you will resolve your pain and return to a comfortable life.
Secondly, your comment about being more of a target to muggers if you look ‘vulnerable’. I don’t know where you live but I just find that so depressing and disturbing. Do you have any support who could accompany you to get out? In my own area since Covid we have lots of brilliant resident groups who offer help if someone is in need.
You have done brilliantly tracking down your gluten issues, good luck with the muscle pain.
Best wishes, David
My sentiments exactly David2017. My Mum and Dad were the same didn't want a rail up their steps to the front door because it would be a sign they were elderly - could also have been a sign there was a pram or pushchair in the house - it is very depressing but a very real problem. I have to say though I had an Aunt and an Uncle living in quite a rough area and they had all those things , special rails outside the house a chair lift that could be seen through their glass doors and trolleys for walking and lived like that into their 90's with no problems from the rough element in the town. I believe it has been proven that often the fear of a mugging or break in because you can be seen to be more vulnerable is far more than the actual risk but that is neither here nor there when you are in fear of these things happening or if this has happened to you or someone you know.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2024 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007