I had a lot of pain in my thighs post surgery, and had no idea it was caused by damage to nerves in groin and thigh area. It has been an agonizing year, feeling like I will not walk normally again. However, just 5 days ago, the gynecologist gave me medicine to take away nerve pain. What experiences did others have???
Hey there! My husband has been in pain for the past three years post surgery. We ended up at the Lismore Pain Management clinic (thank the lord as the wait for the gold coast one was 18 months to two years)....anyway, we saw a clinical psychologist, a physio, a clinical nurse consultant and a pain doctor. They then had a meeting to assess the situation. My husband now takes a nerve drug called Lyrica..... As well as a few other narcotic based meds. These guys have really saved him. The other person wh helped us immensely was the palliative care/ oncology clinical nurse consultant at Tweed heads hospital, who would call my husband's GP with suggestions as to what might help him. He is not totally pain free, spending many weeks at a time in bed sometimes, but he can have good days now. The other thing I am researching HEAPS at the moment is an Indonesian herbal remedy called Anatan. It is a natural pain reliever, it is legal to import into Australia, it is cheap and according to the people I know who have taken it, it is magical!! The other thing that has helped my husband immensely is acupuncture from a Chinese TCM practitioner. It is the answer! Pity it is expensive$50 a time, and not covered by our basic health cover. But SO WORTH IT!!!
Hope this helps!
Thank you for the response. After my surgery, I had chronic endometrial cancer, I had continuous leg pain for a whole year, and walked slower than the slowest of our elderly. I finally went back to my original surgeon, my gynecologist, and he finally put me onto Neurontin. I cannot believe how good it feels now as my walking has improved. I do still get muscle pain, and found out after blood work that I now have low Vitamin D. Two days ago I took a big fall in the apartment block where I live, and fell very heavily onto my palms. I had to ring a district nurse to see if I could take Panamax. I was still in pain and shock. I have two bloody scratches on my ankle and have to monitor them because I have no immunity left in my legs. I feel like a total wreck, but I thank GOD that I haven't lost my sense of humour, and in order to survive this unfairness, I crack quite a few jokes in my head. My sons have told me to stay in bed for a week and really rest. Even in Melbourne there is a very long waiting period to see a pain specialist. I do not like my GP as he always looks angry and I feel like I'm wasting the time of a man I rarely see anyway. I am going to find a new GP or basically take care of myself without having to have a Doctor. Cancer Council and the volunteers at Peter Mac are better than any doctor or psychologist or social worker. Our support for one another is the best healing tool. All the best for this Easter period to all who suffer pain and feel misunderstood by the medical profession.
I am over 14 years past stage 3c colon ca 6/13 nodes involved. I had a very old regime of chemo. Basically i had a weekkly infusion of 5 /fu and every second week it was enhanced with levamisole which is an anti -parasite med usualy used by beef producers. I had 48 sessions of the 5Fu. At first I was fine and kept on working,I started walking and for 18 mos I averaged around 50 miles a week. My problems started with acute pancreatitis followed by gallbladder removal. I started to notice that I was getting numbness in my feet. They checked me for diabetes. I started to suffer from renal coloic(kidney stones) My feet and legs were getting worse and were starting to swell. I had a urine test which showed I was losing nearly three gramms a day of protein thru my urine. I was put on to a high dose of prednisone for nearly 18 mos. During that time they tried me on lyrica as my neuropathy was so bad I thought my legs were on fire. The lyrica did not work which is probably just as well as it was costing me nearly $300.00 a month for the dose I was on.The prednisone did not help my kidneys and I was switched to methotrexate. Unfortunately when I came off prednisone I had a massive flare of psoriatic arthritis. The meth helped that a bit. I tried other drugs for arthritis ,sulfasalasine and arava. They all had dangerous side effects and I had to stop. All the while my neuropathy was getting worse and an mri diagnosed a problem in my lumbar region which was making it difficult to walk. All the drugs I was taking were designed to stop disese progression. I suggested to one doc that it was the pain that was killing me. He tried me on endep. That was scary and he soon stopped it. The neuropathy was now involving my left hand . I saw another doctor ,he tried me on morphine patches and neurontin.The morphine made me feel quite unwell and disoriented. The neurontin was just like lyrica only as I increased the dose my neuropathy got worse. They still haven't resolved my kidney problems after three kidney biopsies. I am not on anything for my arthrits though my rheumatologist has told me If it is not controlled it will cripple me. He is now suggesting Humira which is one of the biologicals and I need to have tests to see if I carry antibodies for TB ,and all the hepatitis before I can start. He is an ex oncologist and he believes most of my problems are long term effects of chemo. He believes that I may have suffered from these problems at some stage but the chemo has accelerated the problems. If the humira works it may control the arthritis and the spodylitis but not the neuropathy. At the moment my only relief is panadol osteo ,panadiene ,fish oil and vit d3.
It is amazing how you can learn to live with pain, after a while it becomes the new normal and you really enjoy the rare times when for unknown reasons it back off a lttle. My best wishes to all of you for a pain free existence,Ron.
I'm almost crying reading this. After my endometrial cancer which was a grade 2 and had spread, requiring radiation, I only learned months later from a GP that radiation can damage lymph nodes. I had lymph nodes removed during surgery. For a year I struggled with walking, and each time I went back to Moorabin Hospital for a pap smear and told the Doctors about the pain in my thighs, they blew it off and just said, oh well, some people sustain nerve damage after surgery. When I said that my thigh felt like it had an internal drip, I was given strange looks. Now, after a year of enduring chronic pain, I was put onto neurontin which has begun to work. However, I took a huge tumble 4 days ago in the drive way of my apartment block, and lurched forward falling onto my palms and left thigh. Talk about shock and pain to the arms. I couldn't walk for 2 days, and now I am back to using a walking stick and walking with very stiff thighs. I am going to turn my walking stick into a fashion statement. I don't drive and I have no one who can drive me about, so I rely very much on my legs. Since I have never been sick before, navigating the Medical system is hard for me, especially since I spent 28 years in America mostly with private health insurance which I barely used anyway. I am going to find a more sympathetic GP if they exist. I don't like the one I have. He always looks angry.
So sorry,Ramute and Ron,that you have so much pain. Although one can get used to some level of pain and suffering ,there is a threshhold that varies from one individual to the next. No one can really know how much pain another feels so it is good to share and learn from each other. Sometimes some get ideas to try.
Hi Ram and Silly,
I totally agree that pain is relative. The kidney stones I pass are uric acid crystals and they are sharp. My gallstones were little black cholesterol stones and they did not really bug me until one blocked my pancreatic duct. Pancreatitis is the worst pain I have had if only for the duration of it. Having said that the acute pain I suffer with stones makes it a lot easier to endure the chronic pain of arthritis and sciatic pain. It has raised my pain threshold and as they say pain is just Gods way of reminding you that you are still alive. Hugs Ron.
Guys, this is a great thread for us to add to. My chronic pain began in the vaginal area two years before i found out that I had cancer. I couldn't sit on any type of chair, without this dull, ceaseless pain, and pondered and deliberated as to the cause of it. I only found relief when lying on my back. I won't go into graphic detail, but other symptoms in the region started to manifest, and I got really frightened. I began to suspect i had cancer. But I was living in Los Angeles with no health insurance, and I couldn't afford to address this problem. Luckily I managed to get myself and sons back home to Australia. I was told my mother had cancer. When I told her I had cancer, she refused to believe me and said I was lying. Well, the rest is history. I have a very high tolerance to pain, but when it is enduring, you don't realize the strain it puts on your face and on you to cope mentally and emotionally. It takes a lot to make me crack under stress, and I found myself just grinning and bearing, knowing there was no one to share anything with. The silence of it is awful as we human beings need each other in good and in bad. This big fall I had just before Easter put my arms into shock because my palms took the brunt of the fall, and I am still in pain. My whole body is in pain, so I am not doing anything but mostly resting and allowing time to heal the pain. However, the Neurontin for nerve pain is working.
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.