It's not surprising oncologists aren't 'up' on pain management; it's not their area, but they should be able to recommend someone to help. Your GP is your best 'go-to' person (that's their specialty, I suppose--finding who is best to help).
I don't know a lot about surgical adhesions, but isn't there a danger that they might tear if you stress them too much? I mean, pain is often a warning to not-do something.
For all the above reasons, I think a pain clinic is perfect for you--they can examine x-rays or mris of the scars and help you find ways to get your exercise in without causing yourself more problems.
I really hope you find a path that works.
Every moment is unique, unknown, completely fresh. ~~ Pema Chodron
I also have surgical adhesions, in my case from several abdominal surgeries back-to-back. The pain has lessened over time, but I've had moments when it was agony.
Have you seen a general surgeon? It might be worth looking into scar revision or some other additional surgery. Your general doctor should be able to refer you to the right place.
Try heat instead of cold. A hot bath can make things bearable. A hot water bottle or rice pack heated in the microwave might help too.
Things like yoga and stretches in a warm-water pool are unlikely to give you immediate relief, but they might help you over time. IVY on how hard it is to get treatment for something like this and how frustrating it is to live in this much pain! Specialists, particularly surgeons, generally don't care much about what happens once they are done with you--it's sad, but a pretty normal thing in my experience.
I'm afraid that I don't have any experience with the pain you're experiencing. One thing you might do is ask your doctor if it's okay to take yoga. I take a class where several of the students as well as my instructor suffer from sciatica. They all say the same thing, yoga has helped them manage their pain. So, perhaps a good yoga class might help you manage your pain. She has over 20+ years experience teaching yoga and something she says on a regular basis is that yoga can help improve the lympathic system.
But, ask your doctor first if it's okay to take yoga. It might help. And you would definitely need to take a class. You need to work with an experienced instructor.
I don't have personal experience, but, I know someone who got a lot of help from a pain clinic. It's not for people who have pill addictions, it's for people who are having pain and they have lots of different ways to help with it (e.g. injections to numb affected nerves, TENs units, medications, etc.). Not all of the medications they can prescribe are opioids/addictive.
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I have had help from the Pain Team when I was in hospital after a really bad car accident. They were really helpful.
I am surprised your Oncologists weren't a little more helpful. I suggest that you talk with your GP - he/she will be able to refer you to someone who CAN help if it is out of his/her depth.
There is another avenue you may be able to take ..... a Medical Acupuncturist! I have had a lot of Acupuncture for Benign Essential Tremors, but the Dr didn't just treat that. If needed during a visit he would also pop needles in for stress, pain (painful arthritis of the spine and scoliosis) torturous headaches, and asthma. I often used to talk with him and he said a lot of his patients were cancer sufferers re pain and nausea, and pregnant women who had real bad nausea. A lot went to him with good success when conventional Dr's were unable to help them.
I used to get sooooo relaxed there - often dropping off to sleep while the needles were in :-)
Thanks. I thought pain clinics were the places people go to when they have pill habits and want doctors who will prescribe opiates without question. That's not what I want, so I've never looked into them. But I'm assuming I might be wrong if you're suggesting it! I have an appointment with my PCP in a month, so I'll ask him. One more thing to add to my long list of complaints! :)
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Have you considered contacting a Pain Clinic? Most University Medical Centers have really good ones. If anyone can answer your questions...and help you deal with these issues...they should be able to! If there isn't one near you, most also provide consultation services with other physicians via computer links, etc. You could also ask your Oncologist for a referral...and if it isn't forthcoming, I wouldn't hesitate to make an appointment with an Internal Medicine doctor to explain your situation and ask for the help you need. Best of luck....and congrats on getting the lymphoma in remission!! patti
"Its not the Mountain ahead that wears you out, but the grain of sand in your shoe..."
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I recently finished treatment for lymphoma, and have a lot of scar tissue inside me. The worst is at the top of my leg, from where a lymph node in my groin was 19 cm, and a few others were almost as big. I can't have surgery as the scar tissue is wrapped around nerves and veins/arteries. Despite the pain, I've been keeping up with exercise 7 days a week, unless my body tells me it needs a break, because I want to make sure I do whatever I can to prevent a cancer return. But there are times, like right now, where I'm just in agony after an active day. My oncologist and radiation oncologist seem rather unconcerned by my complaints, since I don't actually have cancer at the moment.
Has anyone else dealt with scar tissue (inside the body, palpable but not visible) for whatever reason? Does it eventually go away? Do you have any suggestions for pain relief or prevention? I'm very unhappy. Ice and Advil don't seem to do much.
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