pain meds

[mama]

I know many of you share in the frustrations when you hear the line, "Hmmm, Lymphedema shouldn't hurt." I know my husband, Josh, has heard it from doctors many times before. The fact is that for him, it does! He takes Percacet almost daily and sometimes adds Morphine. Neither one quenches the aches completely. He has to bite the bullet many days to stay awake, resist addiction and give his liver a break. He takes frequent baths to ease the aches in his knees even though he's heard that heat isn't always best. Are any of you on medication for pain alone? What works?

Pat - how do you know so much? Are you in the medical field or self-educated? You have so many answers and I know a lot of people are grateful for your advice. I'm one of them! Thanks.

~Josh's "Mama"

[silkie]

Hi Mamma

Josh sounds like he has a tough time

I only take co codamol 500 and those when i bit the bullitt and broke my teeth on it

I find massage and wrapping helps me to doesnt make the pain go away but helps move some of the fluid putting pressure on my painful areas

Also some nights i pace the floor do my deep breathing just to help move those muscles.

I would love to soak in a warm bath i have special shower now

the legs are a little wobbly for the in and out of the bath

sotty I cant be of more help

Huggggggg

Silksxxxxxxxxxxxxxxxx

[patoco]

Hi Ya Mama

I'm always amazed when I see articles that say "lymphedema is a painless swelling"....yeah...right....tell a mother...having a child is a painless event too.

I tried over the counter...most didn't work. Then I tried NSAID's until I started to have extra swelling and then did research on them and their negative effective on the lymphatics.

So then I just quit taking anything. I can't stand the thought of prescription pain meds...and I know this is just my own stubborness. But it would be difficult for me to work and drive while taking them and quite honestly I'm afraid of them. I had so much of them during the massive surgeries I had as a teen and young adult that I built up a high tolerence

Just known to manay other cancer patients and/or lymphedema patients that have gotten hooked...so I grit my teeth and bear it.

I understand about the liver...after all these antibiotics and meds...both liver and kidney damage is always a concern as well.

Much of what I have learned, mama, is through struggling with lymphedema for some 53 years now. Seems like I spent all my youth...even then teaching doctors about it, being experimented on and the like.

Then I have studied too....pouring over clinical reports, research items anything that I can find that is credible, peer reviewed information for my lymphedema family....and I do love research anyway...kind of a passion for me...learning things.

I just wish there was more that I could do, like offering a cure. Hopefully, as the research is intensifying now, that may come about.

Big hug to ya

Pat

[lisa_t]

My doctor thought that there was nerve damage from the severe Cellulitis. As always Dr Francis was right. I went to a pain management doctor and they put me on Lyrica. It is for people who have shingles. I would see about going to a pain doctor.
Lisa NJ

[Pain_in_Utah2]

Hi, I had gone for 5 years not knowing what was wrong with me, then another year having doctors tell me to live with it or it couldnt be Lymphedemia because I had not had a breast removed! I now have a doctor that knows what I am talking about and has tried to help. I started out on Lyrica for the pain along with Lortabs and meds to help me sleep. While on the Lyrica I found that it worked but I had to eat or I would fly higher than a kite, after 3 months the doctor has removed me from that as I should not be messed up 24/7. We are going to try gabapentin, if this does not help then I will just stick to lortabs and meds to make me sleep. This new medication is also for nerve pain, he feels that the swelling is causing the nerve pain. I hope this new medication helps because I really dont want to go back to nothing.

[davef]

HI I HAVE LYMPH IN MY LEGS ARMS AND TORSO MY PAIN MANAGMENT DOC HAS ME ON METHADONE LYRICA AND OXYFAST THE METHADONE DOSENT METABOLISE IN THE LIVER WHICH IS GOOD I ALSO HAVE HEP C SO IT WORKS GOOD FOR ME YOU MIGHT HAVE YOUR FAMILY DOC REFER YOU TO A PAIN MANAGMENT DOC

TAKE CARE
DAVE F

[gottahavesun]

I have LE entire body up to neck and I'm on 400mg gabapentin 3 times a day for nerve pain and on oxcodone 20mg twice a day and take ultracet as a supplement when needed. I also take 100mg Amrtripline at night to sleep--omg sounds like I'm a walking drugstore huh....we just changed the gabapentin from 300 to 400 mg-it was helping in the past but even with increased dose the nerve pain and spasms I'm having in my back, shoulders, neck, and down arms to fingers takes my breath away at times. All part of our daily management. Now that I can't work anymore my daily LE management is my full time job and like any full time job LE management is not mundane and it sure keeps me and my doc on our toes with new challenges to overcome. Utah, sorry to hear the Lyrica was making you feel like you were flying--I would hate that feeling too, so I'm glad you are trying Gabapentine. I know it does work for me because when the pill(pretty long) gets stuck in my pill case I can tell within a couple of hours that I've missed a dose. I hope the Gabapentine works for you -let us know how it is going once you've tried it awhile.

[silkie]

Hiya Everyone

I do have pain nothing like what you all seem to be suffering

I try not to take anything for it but we all need help managing it at sometime From headaches to cronic pain like many of you are suffering

My mum was on pills for arthritis long as i can remember
and she had so much pain so long eventually nothing worked even regular cortazone injections in her knees didnt help

So I suppose i am very weary of taking things regulally


Forgive my ignorance but methodone in the uk is used as a replacement programme for hard drugs. I do know a little of this and the kids here
have a much harder time coming off methadone than the heroin it is much more addictive . I know from personal family experience
methadone comes with some real problems

Lisa how you sleep at all is amazing in all your wraps sleeves i don't know how you do it

i have been cheating once a week one night a week i do my massage
then go commando in bed no wraps nothing on my legs

Just one night of freedom for my legs my skin
letting them breath I am in bed legs up and I sleep Lisa
well for me its sleep 4 maybe 5 hours it is wonderful i do mld again in the morning and put my supports on I even have an old pair of supports for the shower when needed

My night of sheer bliss of naked legs is wonderful not only to feel the freedom to move my legs in bed feel the sheets (silly but its wonderful)
it gives me such a lift

Ok I am not supposed to do this but especially when you have had one of those head butting the wall days for me it a great help mentally

And maybe im luckier than many it doesnt seem to have had given me problems as yet

I will be a good lympher soon and wrap again every night
but it has helped me with some stuff going on in my head
by getting a wonderful nights sleep

hope you have a less painful day folks

Hugssssssssssss

Silks xxxxxxxxxxxxxxxxxxxx

[gottahavesun]

Silks--let me in on my secret for sleep--I take the Amrtipline to help me get off to sleep but about 3-4am I wake up hurting or hot(even with fan on me) then I rip it all off-go to the bathroom and then go back to bed nice and snug in the bed for the last few hours of sleep with nothing on my arms or legs except for my husband's arm....I live by the get away with the least amount to manage your LE but LIVE-as you say we need to let our skin breath.

well i'm off on my one week vacation with my hubby--it is raining like cats and dogs, so we might have lots of inside time. We are bringing our computer to chat with our son if we can get a connection and if I can I'll be on checking the boards.

Silks--glad you starting letting your wraps off one night a week--bet that is your best night of sleep all week-take care oh and if you get a chance i didn/t see you post about learning the kinseo taping on your arms--how did it go?

[silkie]

Hi Lisa

hugggggg my friend

I know my legs are ok so i thought i be naughty but nice for a change

the kinesio is so easy and it helps me a lot

although i have not had it on for a few weeks my arm reacted to the

adhesive first time ever so i have gine the skin some tlc and i will try again maybe end of the month

I miss it the pain was nothing with the taping just an odd twinge


its such a simple idea Lisa the guide they call it leads from the next node
point up your body from your swelling or pain the sections or strips then go from the swelling up to the next node or as in the case of my shoulders
down to my under arm node but with sweating as one does you take it to just before the under arm on the back

the kinesio sticks to your skin but the way you put it on by forinstance my arm i will mave my hand back as far as i can put the kinesio on when i put my hand and ar back to the natural position the tape puckers with the skin causing it to pinch and lift that are so a little trapped fluid may be released and it will follow the tape up the arm to the node

Sorry if its not bery clear but that is basically how it works

and luckily for me it worked great untill this reaction so X your fingers for me all will be well when i try again

Have a lovely break Lisa
huggggggggggggggg
love
Silkie xxxxxxxxxxxxxxxx

[Pain_in_Utah2]

I tried the Gabapentin and was feeling really sick in the first 2 days, I got a headache and stopped taking them. Well I went to the doctor because of the sick feelings and the headache and he made sure I was off the meds, they did not work and just made things worse, it has been almost 2 weeks now and I still have the headace.
I had heard of people that said you can not go on a plane and I believe it now. I got a call Thursday morning about my son who is in foster care, he had a low blood sugar during the night while everyone was asleep and had a seizure and they couldnt wake him up and was in the hospital. I flew with him to another hospital and half way there my legs started swelling bad and hurting very bad. My pain meds were 5 hrs away from me so I had nothing for the 3 days we were gone.
My son is home now and doing much better and I have my percocets that the doctor put me on the day before I left so Im feeling a little better but still swollen and hurting and very tired.
I dont know what we will do or try for the pain management now, I cant afford to do a pain study so that is out of the question. I was also just fired from my 15 hr a week job because I was not able to work because I had been sick with my legs and changing the meds around, so Im back to the drawing board with it all again.
Im glad that this medication is working for you Gottahavesum.
Good luck to you all and I hope we find some way to be able to sleep all night with no pain or sweats.
Melissa

[bygrace]

Hi,
I have truncal, arm, hand, and breast LE. I take 4 pain meds each day. I couldn't live w/out the gabapentin, tramadol, etodolac (lodine) & vicodin. I am being monitored by a pain management doc. I understand how hard it is to live w/this pain from LE. And how hard it is for people to believe that it affects me so much I am unable to work full-time or even part-time right now as an admin asst. just typing for a few minutes each day on the computer turns my arm into throbbing pain.

Well, I am hopeful for this new treatment--my pain doc has started a series of stellate ganglion blocks. the first one stopped my pain totally for 10 hours. Although I had a case of cellulitis inbetween shots, the second one was yesterday and I was painless for 16 hours. He said he will do a series--one a week--and that at the end of the series (which might be as many as 10) I should be painfree for at least a year!! There are risks but I am willing to try anything. I am so tired of being in pain for the past two years, I am willing to do this. If you search "stellate ganglion block" on a search engine, there is very clear information out there on how they do this injection and the faqs often asked.

Maybe these will help someone out there reading these posts!
take care, grace

[mama]

Thank you to all who responded to my pleas for help for my husband's LE pain. He just started the gabapentin this week. He is going to a pain clinic on December 1st. I looked up the injection Grace mentioned as well. Thanks again!

[bygrace]

Hi All,
I just met with my pain doc last week. I will have my series of stellate ganglion block injections starting the week after Christmas. He will do 4 and then we will see how things are. After my meeting with him, I wanted to pass along some information he gave me regarding these injections. Some doctors don't do contrast dye or x-ray to locate exactly where the needle goes. He does and he believes it is very, very important to do so. If anyone decides to "try" this injection series, please, please query the doctor and make sure he/she does include this xray/contrast procedure. If the doc "misses" there can be serious side effects--like injecting the lidocaine into a vein and having it go to the brain!! Also very important to have this done with an IV!!
My best to all of you in your quest for painfree life!
grace

[patoco]

For updated information on:

Lymphedema and Pain Management

http://www.lymphedemapeople.com/wiki/do ... management

Pat

[bygrace]

I wanted to give an update on my pain management program. I have finished 2 series of stellate ganglion block injections in my neck. While I am not pain free, I have been able to go off 2 meds. I am currently undergoing celiac plexus block injections in my back for my abdominal pain. The injections have reduced my pain to 3-4, and sometimes I have no pain. I will do another series of 4 neck injections in June. I don't know if I will be able to reduce my pain meds any further. However, I hardly ever use Vicodin at night anymore. If I do it's only a couple times a month. Before I met with the pain management doctor I was using Vicodin every night for the pain.

Hope this helps some of you out there searching for a way to eliminate your LE pain. It takes time but it is doable.

[davef]

my pain managment doc took me off all my drugs and put me on fentynal patch which i have been on before and i will tell you it is so nice to wake up in the morning and not hurt i tried the gabapentan and had one of the worst side effects ever i started throwing up blood and my gut felt like it was going to drop out the back end if you know what i mean but for me the patch is a god send sure it makes you feel weird but it is worth it not to hurt my wife has even noticed a good change not hurting puts me in a whole lot better frame of mind so it might be something that you might think about good luck

[bygrace]

Hi,
I thought I'd update my status with pain, and what I am doing now to help relieve it. I just did another series of stellate ganglion blocks. They help but I am finding that my pain seems to be increasing, and I believe it is because I have gained some weight. So, I am now on a wheat/gluten & dairy free eating plan. It seems to be helping. The meds I am taking seem to interfere with the working of the gut, and when the adrenals are messed up, the body can't process the food well, and so just stores more fat. I think between the meds and wheat/dairy insensitivities, my gut has been trying to process my food but is unable to do so. After 3 weeks, I have lost 4 lbs. A very sensible loss, and one I am determined to stick with. Before this lifestyle change, I believe I was eating the wrong foods for my body. It really hasn't been that hard, and I'm going to start branching out and trying to use some of my favorite recipes with exchanged ingredients. Have even lost my craving for ice cream.

I am meeting each week with a PT who specializes in scar tissue elimination without surgery. I have scar tissue by my axilla and breast on right side. I also have scar tissue across the the abdomen at the hip line from results of TRAMflap breast reconstruction. My abdomen tends to swell, and I have been swimming or in a water exercise class 5-6 days a week to combat that. The PT is now using Kinesio Taping to help move the fluid out of the areas that are swelling--it works amazingly well. The special tape is applied and stays on for at least 4-7 days. The tape is applied so that it lifts the skin and gives the lymph fluid more room to move through the lymph channels and or to the watersheds in my body. The first application of tape reduced my LE pain from a 5 to a 3-4, and the sharp pains I was experiencing in the reconstructed breast are gone (even the stellate ganglion blocks didn't help those); sharp as in a 8-9 on the pain scale--enough to take my breath away and sometimes cause me to double over! Today the PT started working on the deep scars in my abdomen and breast, using a butter-like substance with a beveled stainless steel knife-like object that she ran up and down the muscles, rather hard, for several minutes; while I reported to her my pain level. I could feel the beveled object going across my abdomen and "catching" on what felt like cords or grains of rice. I am to do this at home all this week. If we can break up this deep scar tissue, my LE therapist believes that my pain level should drop to almost 0-2 and that eventually I may be able to go off my medications. Next week, the PT will assess how the scars are responding (and these are deep, deep scar tissues) and will do another round of the pushing on the scars. In addition she will be adding special strengthening exercises as well as resistance exercises. The deep scars are a result of my body's response to the high level of pain I have lived with for almost 3 years since the last surgery and although it hurts to do this beveling treatment, I do feel better after.

My OT will also be doing some cool, light laser treatments. The laser reaches deep into the body and also helps break up the deep scar tissue. I hope to get well enough from these treatments that I can go off many of my pain meds.

These treatments and modalities--beveling, lifestyle eating changes, special exercises, laser and taping--will be added to my "toolbox" used to battle LE so that I can live and actually have a life!!
Sorry this is so long but I want to share what I am learning about LE, and its effect on the body. I'll keep you posted!