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Chronic Pain.

I have severe neuropathy (nerve pain) in my hands and feet due to chemotherapy treatment for Hodgkin's Lymphoma -- believe me, I wouldn't trade it for cancer any day (in remission since August, thank you very much!), but it makes it difficult for me to manage even simple every-day tasks. It won't go away overnight and so I'm finding the best ways to manage it and continue to live my life, but there are days when it just gets to me.

So my question is, how do you deal with chronic pain and how has it impacted your life and relationships?

bleurowz 8 Apr 11
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27 comments

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10

It literally almost destroyed my life.

Nobody believed me; saying "Fibromyalgia" didn't buy me any credibility for my claims--it rather seemed to hurt it. I was lazy, a malingerer, a liar, an attention-seeker.

I was shamed, vilified.

Cannabis helped significantly--far more than anything else--but it couldnt eradicate the worst of the pain, and came with its own (mild) problems.

Exercise helped tremendously by dropping my overall pain by several levels and reducing the frequency of my flares--as well as the other general benefits you would expect: better sleep, clearer skin, improved mood, lowered stress, etc. But I still had occasional, debilitating flares.

When I was at my absolute worst--in such pain that I couldn't move, couldn't sleep, couldn't even scream, could only lie still and pray for death--I had a little success with a meditative technique that I developed literally out of desperation. I realized that I was focusing on the pain--and knew that wasn't going to help me, but couldn't seem to break free from it--so I decided to use that focus and try to go through the pain, rather than linger in it.

I tried to break my identification with the pain, and locate my identification somewhere else. It went something like this:

I am not this pain.
I am not this body.
I am not this sensation.
I am not this consciousness.
I am not this awareness.

(This tracks fairly closely to some classic meditative objectives.)

For some brief, flickering moments, I was able to dissociate myself from the pain. When you're in too much pain to fall asleep or even move (so you couldn't kill yourself even if you wanted to), those brief, flickering moments are life itself.

Worst thing you can do is go to a pain clinic where everyone moans and groans about their pain. I've had fibro diagnosis since early 40s. Ritalin enabled me to get up every day for 20 years but leukemia and heart failure had drs take it away from me. Chronic fatigue is back.

Couldn't say it better myself... ALL these things greatly helped me when I developed neuropathy 10 yrs ago. I'm lucky that it slowly healed and is much better now, but at times I did all of these things and found each helped a bit.

8

I can not straighten the fingers in my right hand. They are locked in a claw position. All due to graft vs host disease-from bone marrow transplant and chemo. Also diagnosed as schleraderma. I have trouble with daily tasks as well. I manage the pain with weed and I'm waiting for my official Cannabis Program card to come in mail. Definitely can go into more detail on messaging or autoimmune group supporting each other.

I am so sorry that you must be faced with such a challenge...my heart goes out to you!

8

Me .. Toasim and the meditation side .. Been proven to reduce brain tumours .. brain swelling and inflamation in the body......

Turmeric and cinnamon in milk.. You will find a billion recipee's online and sceintific articles about the recently discovered benefits of Turmeric (fresh root) not powder.. Comfrey may help (read up again).

Maybe yoga to help circulation ??

Very good diet .. Less chemical the better.

CBD cannabis ... Weed in general .. Edibles would likely suit you best.. May take a while to work out your best dosages.

Other than that i have found leaving toothache to go so far past reasonable levels on an extraction takes my mind off things (up to a point) .. 😉 but it's not the answer lmfao! just an indication of how used to pain i am lol!! Hope you find some answers.

7

I can confer have had L5 S1 replaced in my back polymer and titanium. Legs get numb sometimes they fall asleep constant pain. Hands get spasms like charlie horses. Have arthritis in my back and knees. The sleepless night sometimes drives me crazy. I do the Jedi mind trick and ignore the pain, the surge of pain often reminds me that I need more Jedi training.

7

I was injured while I was deployed (I got blown up in a vehicle for a 3rd time) and had to undergo surgery to remove dead muscle in my foot. Which left me in chronic pain.

I was originally on narcotics 4 times a day, then it went up to 5 times a day, and got up to 6 pills a day. And it had a serious impact on my personal life as it eventually led to my divorce. And it wasn’t because I was on pain meds, but it was because my pain kept me inside and out of social events. Which my ex-wife wanted adventure and to be a part of social circles.

So after our divorce, I eventually was able to quit cold turkey. All pain meds completely out of my system. I’m still in chronic pain but I deal with it now with over the counter meds and compression sleeves (like the Tommy Copper stuff) and I am able to get out and socialize a bit more.

But still, I can relate to what you’re going through and I can sympathize completely. I’m so sorry you’re having to deal with this. Good luck and keep trucking forward.

7

CBD works really well for a lot of people. Neuropathy is a tricky one, though, as I've seen that not a lot of physical remedies (massage, TENS units, etc) seem to do anything for it. The folks I know who have neuropathy take gabapentin or, I think, Cymbalta, neither of which are opiates.

Tried Cymbolta for fibro-turned me into a zombie. Have had neuropathy too. Ican't tell my pains apart from oneanother-its just pain. No more oxy for me. Had a Tensunit - lost it.

me too the cymbolta I cannot wake up. don't wanna go out got no energy feel like shit either in pain or zoned out

7

Many people are using cannabinoids, cannabis derivatives, for such pain now. If that is legal where you live, I'd certainly urge you to consider trying it. They are processing the THC out of some of the derivatives now if you don't want the effect of getting high.

6

I am currently attempting to get medical cannibis in Florida as I have found that it's an alternative to opiodis. I have PTSD and chronic lumbar pain even after two surgeries.Pot is not a cure all but it does mitigate the pain for me.

5

CBD Oil helps me with chronic pain.

5

damnd if I know I have withdrawn from the world

5

Luckily, I've dodged life's worse bullets but if it gets too bad and my green light's on, call me, We'll talk.

4

Forgive yourself for not doing what you Think you "should" be doing! Allow yourself more "total rest & pampering" days than you think you need. Hire help. All you need to do at any given moment, unless the house is actually on fire, is treat yourself well. Best wishes!

4

I don't have bad chronic pain, but I do have mild pain in my lower back most days. It's kind of like a stiffness. A couple years ago, it was more painful though. My friend thought I was "faking" it. I don't know anyone who fakes pain. I'm sure there are some people out there looking for sympathy. Well, a few months ago I actually found out that I actually have a degenerative disc in my back. Issue identified. I just deal the best I can. My doctor said losing weight and regular exercise would help. Not exactly something you can do to alleviate your type of pain though.

4

I understand. I have similar issues from a spinal cord injury. Gabapentin can help. JUDICCIOUS use of opiods.

4

It is a life wrecker for me. I can no longer do the things I love, I struggle to find a partner who can put up with my complaints and the fact that I won't have sex because of the pain. It's cut me off from my friends.

What I do to manage it is medicate and plan accordingly. If I know I have an 8 hour drive in one day, I make sure I have 2 days to recover. I have assisted living devices and I just try my best with what I have

3
    Chronic pain and neuropathies in hands and legs, getting worse every year.Since 2011, I have been prescribed every pain pill availble , Tramadol, gabapentin, oxycodone.  Thank goodness, my continuous glucose meter I was wearing with my insulin pump did not allow me to take anything that had tylenol as a compound.  So I did research and found oxycodone hydrochloride,  a single compound painreliever similar to morphine. My doctor and I talked it ver.  He prescribed it with the strict warning thast he would monitor how much I took and how often I would ask for a refill.
    I broke the 5mg dose in half and found good enough pain relief to get me out  of bed and down the stairs. I took this dose of narcotics for 6 years, not varying at all.  In 2017 I had my spine fused with "cages" of ground up bone and suppported with titanium rods.  I have no more pain and have not fallen since Thanksgiving, Now my painkillers consist of Aleve Liquigel once in a while and hot baths for the neuropathy. I am also half an inch taller!  My doctor and I talked about addiction a lot over the years.  He thinks that I have found"the sweet spot" in my metabolism, where the opioid is doind all the pain killing without causing addiction.

    But I will gladly become an addict than go through more pain now. I am already making plans on how to pump morphine through my insulin pump! 
    Kidding, just kidding
3

I have bad feet -- plantar facieituous. I don't know the actual statistics: but 1 out of 10 have flat feet, 1 out of 10 flat feet have pain, 1 out of 10 with pain orthotics don't help, 1 out of 10 have surgery (similar to carpal tunnel), 1 out of 10 still have pain. Guess what; I'm the 1. Before surgery it was like walking on 6 red hot nails on both feet -- since 1992 (surgery) it's just 6 nails. An improvement -- but far from perfect. Once I'm up and about, I can ignore the pain, but before and after I'm reminded constantly that I'm in pain. I push pain aside (most times).

I had Achilles heel probs for years, 2 doctors told me if stretching/devices didn't work, too bad so sad. Quote: " Larry Bird had it in both feet his entire career, we couldn't help him either." Turned to Accupuncture from desperation..you know, "I have to pee, how much, really, do I like this chair?" After quite a few ups & downs ( I had to pay for it myself) after 8 treatments I was pain-free...for about 2 months. When pain returned, I tried the stretching stuff again....not my best thinking. Went thru that for about another 3 bouts until I figured to return to the acupuncturist Immediately was a good idea (duuuuh!). Now, 100% pain-free for almost 20 years, no accupuncture visits, either. Many insurances now pay for it too!

3

It's difficult. I have chronic back pain and chronic fatigue syndrome. I have to live with my limitations but I don't have to like it. I accomplish as much as I can on the good days and survive the bad days, working very hard to not take anything out on those around me. It is not their doing.

2

I deal with pain as a result from MS. My latest flareup left me with chronic pain in my feet, legs, arms, hands and neck. I take Gabapentin but it's not enough...I still wake up from a dead sleep crying in pain. I'm in CO so it's ridiculous that I haven't tried cbd oil yet; I've heard tons of good things about it. Also on the list of therapies to try is acupuncture.

Kat Level 5 Apr 20, 2018
2

Sometimes, you must take drastic action, to distract yourself! My 93 yr old neighbor and I agreed...that sometimes there is nothing else to do! Be with those who care about you and can help you detach from the pain, if only for short time periods! Anything, that takes your mind, someplace else! I stress this, because most experts believe there is a 'brain,' component to our pain. On the practical side...a hot bath in Epson salts, might give temp relieve! I am so sorry...because I too, spent years in 24/7, pain. Use your pain reliever sparingly...as when you really need it, it will help a little better! My best you and don't give up hope, for relief! As, I am pain free, and cannot fully explain why, neither the Dr's!

1

I have a friend who suffers with a slow growing cancer where grape size tumours attach to her nerves. She has a tumour on her leg which has a blood clot attached and surgery is very difficult with her rare blood group I have empathy for anyone suffering constant pain. I hope the remission period is long lasting for you.

1

Compared to some my level of chronic pain isn't so bad. I have DDD in my spine along with OA over my whole body and now a cyst on the spine. I also have fibro. I've pretty much withdrawln from society. I just don't have the cash to do anything. I just kind of deal with it. I feel sad that you've had Lymphoma that's got to be rough.

1

Oh well, pain is part of life. I too have chronic pain, After 17 surgeries and many bouts of extreme pain I have learned that the pain last for as long as it does and then you deal with it.
I began smoking pot again a few years back and my life is a lot better with the pain. Presently I am battling prostate cancer and the inability to urinate is something I truly miss. Man does that hurt.

EMC2 Level 8 Apr 16, 2018
1

Meditation, treating yourself well. It hasn't really affected my relationships at all. I roll with a pretty cool crew who know that this is a part of my life.

1

Grab 100's of cases of alcohol and banish yourself to a deserted island with them !

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