So much pain: I am so frustrated. I am in... - My MSAA Community

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So much pain

Amore55 profile image
34 Replies

I am so frustrated. I am in so much pain all the time, having trouble getting any sleep. I can’t believe in this age we don’t have something to alleviate this kind of chronic, excruciating pain. I have tried CBC oil, worked for awhile, opiates no longer work. I actually get the most relief from ibuprofen. Any ideas? I am at my wit’s end with this. I get so tired of fighting, but will never give up. Love to all, Kelly xx

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Amore55 profile image
Amore55
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34 Replies
erash profile image
erash

Hi Kelly, I’m so sorry u r experiencing this pain. Have they determined cause or type of pain? Specific types of pain respond to different types of therapies. You have probably tried this but nonmedication treatments can help a little such as biofeedback meditation and visualization. Just thoughts… Wishing you well

Fancy1959 profile image
Fancy1959

Awe Amore55, I absolutely hate to know you are still not getting any relief from your horrible pain. I wish I could come up with a wonder drug that would take that pain away from you but nothing seems to be working for you. Have you tried acupuncture? I know it's the very end of the list that I would resort to but you have to get relief from something. I've heard very good reports about acupuncture. I wish I had the miracle cure that I could share with everyone who is fighting the pain level you are in this chat room. It makes me realize how truly blessed I am not to be fighting the pain, basically no pain at all in fact, that so many have to deal with on a day in and day out. I'm sending hugs your way to let you know you're not alone. I wished I lived closer so I could be there with you. Perhaps at the very least I could take your mind off of the pain for a few minutes. Prayers are also headed your way asking God to lift the pain burden from you he's placed upon you for so many years. Your dearest friend, Fancy.💕

SometimesCrazy profile image
SometimesCrazy

I hear you loud and clear! Nothing was working. I had stopped taking Cymbalta for a couple of reasons. I started again a week ago and I am now getting 4-6 house of ok sleep. In a couple of weeks I should be back to 6 good hours. A noise kept waking me up at night...it was me moaning in pain. Have you tried Cymbalta or Gaba (something)?

MS_Indestructible profile image
MS_Indestructible in reply toSometimesCrazy

Gabapentin and baclofen is another good med for certain types of pain. I take both.

greaterexp profile image
greaterexp

Have you been referred to a pain clinic? I wonder if someone there couldn't be more helpful in evaluating and treating your pain with multiple methods, if a pain clinic is available to you.

For now you remain in my prayers constantly.

luvhair profile image
luvhair

Prayers for you ..i tottally get it..im so sick of it..just laying on this dang coych feeling like crap.why cant they figure this disease out ok get better😇

bxrmom profile image
bxrmom

Amore55 I'm sorry you are in so much pain and not getting any relief from things that have worked in the past. Have you talked to your doctors lately about the pain and nothing working for it? They may have some ideas for you.

Jessie

Kenu profile image
Kenu

Sorry 😐 to hear you are having so much pain 😢 Like greaterexp said have you tried a pain specialist 🤷🏼‍♂️. I just had my pain pump replaced after seven years and it’s working great for me👍. I don’t due any other pain medication. Hang in there and my prayers are with 🙏🐾😉 Ken

SometimesCrazy profile image
SometimesCrazy in reply toKenu

What's a pain pump? What, where, why, how please?

Kenu profile image
Kenu in reply toSometimesCrazy

It is a surgical implanted pump that supplies a steady flow of pain medication into your system for control of pain. My neurologist and orthopedic doctors recommended it to my pain specialist and for me it has been a blessing 🙏😁 Look up under “Medtronic “ pain pump. 👍😉🐾 Ken

Doubled51 profile image
Doubled51

Kelly I’m so sorry you have to deal with all this pain but I’m kinda in the same boat. I wear a fentanyl patch and take 3 10 mg oxycodone everyday just to be able to function. They have the potential to help us with our pain but thanks to all the idiots that abuse these meds those of us that need more can’t get it. They are afraid we might abuse them or get addicted. Heck yeah I’m already addicted I’ve been on opioids for 15 years. If I wanted to abuse them I’d have done it long ago. If I abuse them this week I’ll just suffer worse next week so don’t worry about abuse just help me get out of pain. It’s not rocket science.

Sorry for ranting my friend but I climb on my soapbox when I hear about others suffering needlessly like I do.

I’ll be praying for you for relief.

God bless

Donnie

SometimesCrazy profile image
SometimesCrazy in reply toDoubled51

I like your soap box!! I totally agree. Anybody that got hooked on pills when the doctors were writing too many prescriptions has moved on to a cheaper high. Now it's just us that really need it.

jackiesj profile image
jackiesj in reply toDoubled51

recently at the capitol of Idaho a small group stood for those who like us, need to be on pain meds(opiods included),,,it is horrid everytime a visit to the docs they are so bound by law now not able to treat patients.at one time i didn't believe about medical oils etc but now see that more natural relief may be in site.I wouldn't be walking without meds.Until a member of the medical establishment speaks out, gets hit with MS or whatever....which i hate to see...might help.You can get hooked on asprin but....i do see why they have to watch out.

Doubled51 profile image
Doubled51 in reply tojackiesj

Yeah I know the drs are afraid to do anything. I’ve been with my dr since 2007 and have been drug tested regularly for all these years and never failed one. They are mandated to test everyone 4 times a year regardless of patient history. I know there were drs handing out prescriptions like candy for years and they needed to be dealt with but it’s just gone to far when we have to suffer and there’s nothing they can do for us. But we just do what we can because I’m no going to do anything illegal so I’ll just keep suffering. Best of luck to you Jackie and God bless

Donnie

Doubled51 profile image
Doubled51

Amen. We ain’t the opioid crisis. The real crisis is coming across the borders and the black market trade much more than legitimate doctors. I’ve been with the same pain clinic since 2007 but I can’t get any changes in my meds because of all the DEA restrictions that they have to deal with. It’s just not right to us that need help.

Donnie

Kenu profile image
Kenu in reply toDoubled51

Totally agree 👍 They act like my wife is a criminal when getting prescriptions that she has been on for dozen years 😡 I agree it is the stuff coming over the boarder😡 The innocent 😇 ones are paying the price 👍🙏🐾Ken

Doubled51 profile image
Doubled51 in reply toKenu

I know how she feels Ken. If we were criminals we could get all we wanted.

Donnie

Qt314grl profile image
Qt314grl in reply toDoubled51

It makes me so mad that I have to jump through so many dang hoops just to get my pain treated. The addicts are still getting their drugs on the black market while I have to go to the pain clinic every month for meds!

Doubled51 profile image
Doubled51 in reply toQt314grl

I wouldn’t even mind the clinic if they would adjust the meds to address the pain. My dosage hasn’t been raised in years but the pain has continued to increase regularly. Burns me up. That’s why I get on my soapbox every time pain comes up.

Donnie

jackiesj profile image
jackiesj in reply toDoubled51

doubled, as you see there are soooooooo many of us here...for you

Doubled51 profile image
Doubled51 in reply tojackiesj

Thanks Jackie.

Donnie

msinca07 profile image
msinca07

Sorry you are suffering. I too get better relief from ibuprofen. I take an opiod only when I absolutely have to because they really don't help.

I agree there should be more help for us.

JMTS profile image
JMTS

There is nothing worse than pain and I have had my fair share during my life time. I have never been into taking pain killers I had to be desperate to do so. I have gone into the Gym and lifted weights and other exercises. I have tried everything rather than take pain killers. I have written about this on this website before at the moment I am taking Tumeric - This is the recipe - one cup of Tumeric (from the Health Food shop) to a quarter cup of black peppercorns crushed - add to bowl and stir together then keep in a dry glass jar with lid - keep in a dark Cupboard away from light. Every night after your meal you take a half level teaspoon in a half glass of milk ( I actually put the mixture through a tea strainer just in case the peppercorns are not all crushed properly. the remains in the strainer I put in another containers and used it for cooking. If I don't take it every second night I wake up with pain and can hardly walk - You have to keep yourself walking to warm up your joints if you don't the pain won't go away especially if you live in a cold climate Tumeric is a blood thinner so that is why I recommend every second night but sometimes I take it every night all depends how I am going.

There is a Tumeric website Just Google - Tumeric for Health Newsletter

info@turmericforhealth.com

Momjules profile image
Momjules

I too detest my pain.

I might love a pain pump. Ugh!

The lidocaine patch seems to help deaden the pain.

Have a nice day and feel good guys!

jackiesj profile image
jackiesj in reply toMomjules

momjules, it is so nice to hear someone get somewhere with this!!!

callyo60 profile image
callyo60

please try yoga and thi chi,i swear by it and its free on public tv,it comes on early,but i dvr them and do them when i feel like it,and when i don't feel like it always helps,pain balance depression,prayer and god bless

AngieRowe profile image
AngieRowe

Pain clinic worked wonders for me; I am on pain patches, I love them, no dizzy drugged feeling and no pain. Sometimes I even forget to change them on time. Hope you get some relief.

eharoot profile image
eharoot

at night I take an Aleve and a Tylenol extra strength together. MD suggestion. then in concert with Baclofen, Lyrica, and a Lidocaine patch I get comfortable enough to sleep. I wake a couple of hours later and take then another Tylenol and Baclofen. (oh for long acting Baclofen) Sounds complex and like a lot of meds but I was a bit desperate to sleep and it mostly works

jackiesj profile image
jackiesj in reply toeharoot

eraroot problem here is that any advil etc is shouldn't be taken if heart issues...sleep is my killer also.The body needs to reboot and after a lot bad days than triggers disease reactions.Do i take a chance on my heart/body because no sleep is hurting it too.Some days i want to throw it all away...I'm at a pain clinic and they are tied to an extent also.Yoga, mind and thoughtfulness, tia chi, massage, the list goes on....hoping something works even once.I do wonder what meds covered up my heart issues....a night at a time.

eharoot profile image
eharoot in reply tojackiesj

It IS frustrating. But you really do need good medical input with cardiac concerns. Does the massage help?

jackiesj profile image
jackiesj in reply toeharoot

yes, massage to relax muscle(which is heart and so much more) does help with the RIGHT therapist.The massage person who wanted me to wear a crystal in my bra.....no way!Word of mouth is good....!

Qt314grl profile image
Qt314grl

Amore55 I also suggest getting in with a good pain clinic or doctor who specializes in pain management.

I have to take a cocktail of 5 different drugs to shut down my pain. They each take care of a different pain receptor pathway. Pain has a way of being a tricky bastard! I take Lyrica, Cymbalta, Trileptal, Baclofen, and nucynta. It took me a while to get to this cocktail and it is a delicate balance between treating my pain and being able to function. My pain is not totally gone but it’s bearable on this regimine.

The nucynta has been a game changer. It is the only opioid that works on my neuropathic pain. My pain is central in nature (ie it is not peripheral neuropathy-my nerves aren’t damaged...my brain is). It is hard to treat and opioids are frequently useless.

I wish you the best of luck and hope you start feeling better pain control soon.

Momjules profile image
Momjules

Wow! It’s nice to have everyone give their own stories and how they deal with pain.

I have been to pain management and even the well known doctor there said my nerve blocks would problemly not work for me as this pain is from the ms lesion on my back.( I have more now) I just started lyrica again and my opioids are what helps along with my pain patch that I save for bedtime.

Having a bad heart along with diabetes makes my medicine hard to mix.

Yup. Still in pain!

cheshcat profile image
cheshcat

I couldn't take the pain any longer and started Cymbalta and Gabapentin. It's not totally "cured" my pain but has made a huge dent and made it manageable. I take 60mg of Cymbalta and 300mg of Gabapentin twice a day. My neurologist said I could take the Gabapentin 3 times a day but I haven't wanted to increase it yet.

I hope you can find something that relieves!

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