Massive pain flare up...
 

Had a bit of a mellow patch with the constant pain in my hips, pelvis, groin area & thighs recently, so I have tried to get on with a bit of life & been on three visits to friends/family in five or six days...

Figured trying to get on with some semblance of life needed to start being done after almost twelve months of being a recluse, but unfortunately, I have overdone things & now have a huge pain flare up with burning pain from lower back all down to upper thighs with short sharp stabbing pains in same areas, but mostly in hips, perineum & my man areas...

Its so stressful to not be able to escape these pains no matter what I do, or what medication I take... These flare ups happen whenever I try to do anything other than sit around being a god damn slob... Angers me that I cant even so my own shopping... The thought that this is me for the rest of my life is so depressing, I just want to cry... And the fact that I want to cry is so far from being 'me', that makes me want to cry again...

Sorry for the whinge, just having one of those days today & I just feel like curling up in a ball & sobbing again...

Hello Andy Pablo :)
 

Andy,
We're warriors, man. My phenomenal pain and pressure where the brain stem meets the spine, no problem. You flare up, you'll beat it until the flare up calms down again.

In the meantime, we keep looking for answers. And we WILL find an answer one day. At least enough to let us have lives.

As for crying, I've lost count of the times I did, then I feel a little better and face the challenge again.

And you're not a slob. You're a tough, really nice guy with a pretty lousy sickness.

I was a boxer once. I got knocked to the canvas more than once (with a broken rib and cheekbone in the process) but I always got back up. You just took a body blow, but you'll get back up.

Life always throws punches. We just happen to be getting Mike Tyson sized punches. But we keep getting up off the canvas. That's why we'll win in the end, however many rounds it takes.

Andy & Mark,
 

We've all been there, & will be again. I WISH I could cry; I haven't in years because crying sets off a pain flare in me like almost nothing else, so I have to cry on the inside.

FWIW, my primary coping method is distraction (and a few trite catchphrases). It can get weird at times; it can appear that I'm ambivalent/disconnected to others and everything around me. Normies don't get that—painees do.

distraction therapy for chronic pain

This is survival. Forget what others say/think—do what ya gotta do.

Doc

Hi Andy,

Firstly, I am sorry for what you are going through but can relate 100%.
I get when you want to push when you feel better, and why not? Personally, I do the same thing and know I am gonna pay for it but, I have learned, that is now the rhythm of my life.

Doc, as usual, is right....distraction is what helps when there is nothing we can do but cry....and speaking from a woman's point of view, it is a strong man who can allow himself to cry because so often society is hard on men that do cry but it is a basic human emotion that we ALL share, man or woman, so have yourself a good cry and you will feel better...I usually do. Honestly, when our pain and frustration get so great, what else can we do?

Coming here and venting is also a smart thing cuz folks here get it and there may be folks in your life who maybe are not as understanding and supportive.

We may all be sitting here in our recliners or beds talking to each other but even though many of us are living a very altered life, not something any of us ever would ever have dreamed of, we are at least here helping each other limp along.

I hope this pendulum swings back the other way for you very soon and you are back to visiting the people you love.
Be well, Diandra

I don't dare cry, either...it makes too much pressure in my head.

Speaking only for myself, get angry; anger—focused/channeled/controlled/managed—can be a good thing when one learns how to use it advantageously, and it produces adrenaline and endorphins, both/either of which can temporarily abate pain. It was anger that helped me defeat depression and the need (if I ever really had a 'need') for antidepressants. It's anger that motivates me and (sometimes) gets me off my keister to do something for myself or others.

positive anger

channeling anger

focusing anger

Doc

I spoke tough yesterday but the pain is a ten tonight and I don't feel so brave. seven years going on forever it feels like...

actually, last time I was in this much pain was several years ago. just had negative mri of brain, but so has every other person in tbi/pcs room who Is in pain. but this is past pain.
feels like a decayed cavity that goes from tailbone to top of head, worst where brain stem meets spine.
I didn't even know there was something that ran that length, painwise.
they have a record of me at local hospital and I've gotten morphine injections before, but it will just wear off.
I didn't want to go back on oxy's, now I se no other way. pain is causing too many palpitations, and I'm already horribly obese.
There are multiple phrases for what I'm in lol.

I've been to the ER twice (many years ago) for migraines. The person who treated me (don't know his rank—orderly, nurse, PA, MD, whatever) told me that pain was one thing they could treat; "Nobody leaves here in pain." He was good to his word, but as you say, it wore off. That was ok in my case (I was just there for a 'rescue'); yours and many others aren't so lucky.

As I said, that was many years ago; things have changed.

Don't feel bad/guilty about that—I don't neeed to remind you that even warriors on the battlefield are treated for pain. (Though I can't say it'll do much for the obesity... :rolleyes: We've got that in common too.) There are some very sound reasons—medically and otherwise—for the adequate treatment of intractable pain.

Here are some publications by Forest Tennant M.D., Dr. P.H.—a respected pain management doctor, that can explain it better than I. These (short) 'books' have been invaluable to myself and countless others:

The Intractable Pain Patient's Handbook for Survival

The Intractable Pain Patient's Guide to Pain Free Hours (Revised Mar 3, 2014)

Doc

Still not settled... Sleep is impossible... Physically & emotionally drained...

My day consists of watching the clock waiting for tomorrow & the hope things might settle...

Andy, we're in the same boat. I said the other day I feel like I wake up just to wait to fall asleep again. I

But i've got your back 100 percent and was thinking of you the past few days.

Know in your mind when you are despairing, that there is a kindred across the ocean going though the same thing and you're not alone.

Cheers dude. And vice versa...

Andy, so hope you are feeling better.

Totally understand, I get terrible flare up's in my neck, back, arm and fingers if I even try to do anything other than move slowly and not do much turning! crazy.

If I cry my head explodes so try not to.

hope u r ok

Im relatively ok... Trying to get on with things. Cooked a curry for my ex ex girlfriend, my brother & his husband tonight... Whole evening I was not myself, but fortunately, they all understand... Curry was nice though & a little left over for tomorrow... So every cloud & all that...

Had to double up on the pain meds as its inbearable at the moment... Not quite feeling beaten yet, but I am struggling with the pain & wondering whether it will ever give respite.... Laying in bed all day is not me, but I have very little choice at the moment...

One positive though is that my neice brought her beautiful friend around a few weeks ago & we connected. I told my neice to pass her my number & heard nothing, so dismissed it. She sent me a text yesterday asking to get together, so that was a positive boost...

I haven't posted here before but thought I should with the flare up I am in. I have neuropathy for those of you who don't know me. I have been in unbearable pain for about two weeks now. I have been going over and over in my head what I may have done to cause this. I can't think of anything.

I have doubled up on my Percocet which I don't usually even take. I had an IVIG 2 days ago with no relief. I don't know what happened. I was doing pretty good. I mean the pain never goes away but I could at least get a little exercise in.

I have spent the last few weeks mostly going from my bed to my couch. I don't like taking the Percocet so I tried doing without it today. What a mistake. I was in tears.

I just neede to vent to people who understand. I don't know what else to do for myself. I think I just have to wait and hope the flare up stops.

It's horrid when pain becomes so restricting. I'm sorry you are in such a poorly way. Big hug :hug:

Sorry to hear that mate. When there is a flare up, its just a case of trying what meds you can to take the edge off & just trying to find least painful & most comfortable position.

Have you tried heat therapy at all? A hot bath, hot water bottle, etc... That sometimes can help...

Lidoderm patches (prescription) often do help; especially with spine pain. Of course, other areas as well.

Mrs. D has recommended Morton Epsom Lotion (Magenisum Sulfate) to rub a quarter size amount lightly on my burning feet and ankles. It really has helped calm down the pain. This too also helps in other areas as well. Purchased the lotion at Walgreens for $8.95.

Gerry

I have tried the hot baths with Epsom salt. Not much relief. I hope you are doing better.

Thanks Gerry I have been using the lotion for the last couple days at night before bed. I also have been using the lidoderm patches on my arms for over a week now. I look funny with the patches all over my arms. You can only use 3 patches at a time or I would use more.

I feel like I'm trying everything I can and getting no long lasting release. Nothing is seeming to quiet the pain for long. Thanks for the ideas !

I understand your not wanting to take opiates. I was reluctant as well. But finally made the decision to try to take back a little of my life; otherwise, I was hardly able to function with the pain eventually overpowering each day.

Also, becoming addicted was my biggest concern until I finally realized using narcotics, I would became "dependent" on living with less pain. There really is a difference.

Yes, if I tried to stop abruptly taking my meds; I would go into withdrawal. It's really a hard decision; but once I fully realized the difference between addiction and dependent on living with less pain allowing me to make each day more tolerable, the choice became easier resulting in my choosing dependence.

I admire your trying just about every thing you could do to avoid the opiates. I pray you will be able to live a more productive life with less pain. Something most of us are searching and hope to accomplish.


Gerry

It has still not settled & I have woken with an even worse pain in my groin & shooting down my leg on my left side... It is constant & making me feel nauseous... Im extremely concerned I have done something & caused more damage...

You probably didn't do any more damage. I've learned from brain injury the incredible pain can come from minor damage.
we both have to keep searching for an answer that will make life bearable.
did they try lyrica or Neurontin? sorry if I asked this already.
I hate to see you suffer like that.

Hi Andy_Pablo, I'm really sorry you're in so much pain.
I suppose it is morning there.
Maybe you should go see your doctor this morning if the pain is making you so sick.
I like your signature file btw. Don't forget what it means.

take care of yourself there.
I hope your pain eases fast.

Neurontin didnt agree with my stomach. Made me vomit blood... Im on Lyrica currently. It takes a slight edge off every now & again, (not so much lately), but its pretty pointless overall...

Docs over in England are shut at weekends unless its an emergency. I have spoken to them in the past & they do not consider my situation to be an emergency... I can speak to my doctor tomorrow but he will tell me same thing he has told me for past few months, which is to wait until my cortisone injection course is completed... I have three weeks until my next injection & then six weeks after that until hospital doctor advises where to go next. So its at least nine weeks until I find out where I can go from here & then a further wait until the appointment for whatever they recommend comes through. It took six months for first cortisone injection appointment to come through...

Its at times like these that I wish I had never cancelled my private health insurance...

six months was a long time man. What the heck? when I didn't see you on the board for a few days I missed ya but was glad because I thought the pain had subsided. Can't they give you morphine or something? you're in my thoughts, bro

There were four months before that while they passed me from doc to doc trying to make up their minds what was actually causing the pain... Morphine might be an option later on after cortisone injections are finished.

Funnily enough, I didn't see you online recently too & wondered if you were ok... One of the last messages I read of yours was a little worrying. Glad to see you're (relatively) ok....

NO HOT BATHS(or showers) .... use only lukewarm water.

NO HEATING PAD.... try ice for 20 minutes. Use this sparingly.

Heat will flare nerve pain. If cold makes it much worse, then seek out a RSD doctor. You may have RSD. RSD patients find heat to be relieving, and cold intolerable. But for everyone else, cold therapy works wonders. I use it all the time for my arthritis flares.

Hey Andy, I hope you got back online to read MrsD's advice. Don't want you to suffer anymore than you already are.
Thanks for thinking of me. My posts tend to get a little theatrical when I'm down and I wear my heart on my sleeve.
There will be an answer. And better days ahead for us both.

I think we are very much alike dude...


I will test out the cold packs & see what happens...

I have been having hot baths & it eased a little while in, but outside things are biblical... Will also reduce shower temperature too...

Its funny, a few weeks being on here & Im getting more answers than fourteen months of doctors...

Cheers Mrs D :-)

Andy,

Just a bit of a similarity. Early on I was having awful pain in my right side groin and leg. The doctor said it was Bursitis and Siatica. I received Cortisone injections at the time in the butt muscle area. It would help for 3 or 4 months. I received these injections about 2 or 3 times in a year.

I asked the doctor about getting these injections this often. She said since this was in the muscle, it was not a problem. Every now and then the groin (both sides) pain comes back but only for a very short time and not as painful.




Gerry

I receive similar injections. They go into my pelvis throught my buttocks & they are intended to help reduce inflammation on ligaments & untrap my nerves...

On & off, things have been worse than ever... Im a naturally positive person, but I have to admit, this is starting to wear me down...

My only hope, & its hope rather than expectation, is that this is all part of the process & once my course of cortisone is completed, things will start to settle properly...

Pleased to hear you have yours under control though Gerry. It does give a little hope to others. Myself included. Thank you mate :-)

Thank you so much MrsD...

Last night I applied an ice pack to my groin/thigh for around twenty minute & I gained enough respite to sleep without the aid of sleeping pills or marijuana for the first time in months... It was still extremely painful, as it is this morning, but the edge it took off was enough to help me get to sleep naturally, which is amazing considering how bad this current flare up has been...

You cannot believe how grateful I am to you... Again, thank you so much...

Good to hear that the icepack tip helped and that you were able to get some much needed sleep.

take care.

Hey Everyone :)
 

Ice helps to relieve my pain when it is at it's worst. I can only feel a slight coolness when I apply it to most of my foot/feet so I have to be careful of the amount of time I keep it on my feet.

I kinda freaked out when I was using icy hot roll on and realized I felt NOTHING...just slathering it on.....not a good idea as I read it can actually burn your feet. That was a wake up call for me.....I really didn't realize my feet can't feel anything. But boy do they hurt !

Good luck to you and everyone here :)

Have a good and hopefully pain free day :hug:

Debi from Georgia

This is a good start, Andy....
Don't overdo the ice however. You might try placing on your
lower sacrum on that side that hurts the most. That may help too. Sometimes getting the nerves at the spinal level works better.

A week with ice treatments--- try twice a day, no more than 20 minutes at a time...and see what happens. I find using at around 4pm is a good time for me, because that is when my pains seem the worst.

I am definately going to do this more often. I will follow your advice of twice a day for 20 minutes & see what happens... I also think 16:00 as like you, this is when pain is starting to get at its worst, & then just before I try to sleep...

The Bursitis is under control; but that was just the start of the spinal issues; Lumbar fusion/laminectomy(along with surgeon said he had never before seen such angry red nerve); then followed by PN; narcotic meds to control pain. There's more; but save for another time.

Unfortunately, this was all before NT. Would have...could have used some additional advice.
Good luck to you "mate".


Gerry