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AVM Survivors Network

Pain Mangement


#1

Hey everyone,
Just trying to get a better understanding on what others do to manage daily pain(if you have it, if not I envy you(: lol) Anyways I have a vicodin prescription, but I don't take them often, never been one into dulling the sences, I'm a manage till it cripples you kind of person. But since I lost most feeling in my last three fingers I get sharp shots of pain occasionaly(not sure what those would be called) and my hand cramps a lot more than it was previously, even though it did quite a bit before this last surgery. I was supposed to get a OT/PT referal but it never happened.But sorry back to my origanl question, how does everyone deal with the daily aches and pains with out OD on medicine(JK) or just giving up. Any like herbal teas or muscle rub like stuff I could try. I can't have any thing with asprin(blood thinner and all) and I'm not sure about heat affects on it, if I could get some ideas to bring up with my doctor it'd be great. Thanks guys :)


#2

Hi Rebecca! I’m pretty new to the AVM info as I just got a diagnosis in April for mine. However, I’ve learned a thing or two about what can help for pain due to the severity of my pain. I have 20 mg OxyContin that I am currently taking because the past week or so my AVM has been very inflamed and swollen. Since you don’t want to take anything for it (which I completely understand, I have a 4 month old & taking pain meds can really throw you for a loop or make you feel slow & goofy lol) I have found that compression helps a TON, I use an ace bandage that I just wrap around my arm. Heat is usually considered bad for an AVM that Ive read but I sometimes alternate a heat pad & ice packs can help, especially with swelling & this has helped me s bit in the past. Eileen, a moderator here, informed me of steroid injections directly into the nerve that lasts up to 4 months. Lastly, elevating the AVM can help, I’ve not had much luck as my arm tends to fall asleep pretty quickly when I lie with it above my head for some reason. I hope this helps you somehow! :slight_smile:


#3

I also found this online:

The following remedies can may help in AVM condition that causes pain aggravated by pregnancy, but your homeopath may prescribe different ones depending on your specific situation:

Arnica montana for pain and for bruises and hematoma formation and prevent hemorrhaging.

Calcarea Fluorica 6X, Tissue salt preparation to increase the elasticity of the veins and to help for tearing pain in legs.

Chamomilla helps for hypersensitivity to pain with mental emotional state of outburst of crying and irritability.

Hamamelis for affections of veins bruised soreness of affected parts with passive venus hemorrhaging. Swelling of veins large and blue worse during pregnancy.

Pulsatilla to support venus circulation and strengthens the veins. It is indicated in cases of varicocity during pregnancy.

Sepia for blood stagnation and blood stasis of the portal venus system and cold extremities due to poor circulation.


#4

Miranda, I started researching some of these herbs and found that several are not recommended during pregnancy because there is no established safety record. These herbs are not regulated, and most do not have clinical studies to validate the benefits claimed here. I must caution everyone to be careful trying herbs and to involve their doctors in decision-making about herbal treatments.

Check out the Coping with Headaches subgroup to see if any of the pain management tips there may be helpful for you. Science-based Medicine (http://www.sciencebasedmedicine.org/) is a terrific site to use when doing "homework" on treatments you might wish to try.


#5

I gave up on any pain management. Narcotics like vicodin, etc. make me so sick to my stomach I had to sit with my head over the toilet all day. My AVM is on my head so I keep it elevated all day : o ) but compression from a hat or even sunglasses makes it hurt worse.


#6

Hi, Eileen, you'll notice I don't say the herbs are unsafe or cause harm; it was more of a "do your own homework and consult your doctor" post. And yes, pregnant women need to be the most cautious. Like most of the other herbs listed, arnica can be toxic or not, depending on how it is used. This is a balanced view of arnica: http://umm.edu/health/medical/altmed/herb/arnica

My view is the same for both prescription meds and herbal meds: Consult a wide array of sources to learn about the risks, benefits, and evidence of effectiveness, and keep your doctor in the loop. Avoid sites that sell or market the therapies, are full of testimonials, and offer no caveats. All of which I am pretty certain are things you do already. :)


#7

Thanks for all the thoughts on this guys:)
What about wisdom tooth pain lol. I think my body’s just rioting against me:P
You guys are all very supportive. Thank you:)


#8

PMS Hydromorphone 1 mg tablets (I use the smaller tablets to better moderate the dosage) to keep me from 'panicking' during harsh pain episodes
10,000 UI Fragmin (low molecular weight heparin) for the DVT)
400mg Advil liqui-gels every 4 hrs

Also..
I meditate frequently - google Jon Kabat Zinn, and do daily yoga <--- critical for keeping proper sleep patterns and staying sane.


#9

I'm currently trying to get off pain meds. Hot tub does wonders for my pain. There really is something to the "mind/body" connection. Relaxation techniques help me also.


#10

Hi Rebecca.

I have chronic pain because of my VM, to such a degree that I can hardly go out anymore. Rest is the ultimate help and remedy to lessen the pain, as increased bloodflow intensifies the pain. Ice packs are also great.

Im on different types of pain medicine, but I have found that Im not the only one who has experienced that painmedicine isnt all that effective for VM/AVM pain. Its not everyone who feels a relief.

I also have sharp and sudden pains. I used to think that this was a pain caused by pressure to the nerves. BUT since I have stopped taking painmedicine for this type of pain, the sharp pain hasnt gotten worse.

So my experience tells me that when you have chronic pain it can manifest and show itself in different ways. Theres not just one expression of pain. I have the shooting pains, swelling pain, thumping pains, deep or more superficial, in the skin, itching pains and more.

Its always a good idea to find a doctor that can help you try out different types of pain medicine, so maybe you find something that helps you. Beyond that you have to figure out what you can do yourself. As someone else mentioned elevation, ice packs and so on.

Please dont hesitate if you need to chat or something. I know what its like to live with pain, and we have to stick together :-)

All the best xx LeaMi


#11

I have to lie Down with my foot elevated to keep my pain at bay and I pretty much stay off it as much as possible now. I’m still breast feeding so I avoid painkillers unless I’m having a really horrible day then I’ll take a Tylenol, Ibuprofen, or leftover Vicodin or Percocet from my c-section/embolizations. I also keep my foot warm or apply heat and that’s been helping a lot because as soon as the air conditioning comes on I get the stabbing pains. But someone said that’s bad? Can someone fill me in on that?


#12

Hi Rebecca I have an avm in my pelvis and suffer with the same symptoms and pain managment issues. I have been put on countless medications anti depressants in low doses, anti convulsants, muscle relaxers and a few others I can’t think of right now but none of them have worked. I refuse to take any narcotics Percocet or Vicodin unless it’s right after surgery because they make me very sick and drowsy. I suffer from the same type of pain as u as well my toes go numb I have pain in my back and shooting pains that go down into my knee on a daily basis. My pain specialist has said there are no other medications to try since everything else has given me bad side effects but mentioned a spinal stimulator which would be an implant but again they arnt sure if it would work since nothing else has. I hope you find something that works for you but my advice after 10 years of suffering is advocate for yourself and make the drs listen to you and if they don’t find a new one. Please share your journey, I love reading others stories and feeling that we are not alone and there are others who understand our pain and suffering! Hope all is well and your doing better.