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hopingforacure

Chronic Pain

Posted by @hopingforacure in Brain & Nervous System, Jun 3, 2012

I have chronic pain throughout my body and have not been able to get relief. I seem to be allergic to the standard drugs so far. Everytime I try taking one, I get extremely ill and end up in bed for days at a time. This has been going on for 6 months. My body is simply worn out. At times the pain is so extreme that I think I can't endure it. Sleep is elusive.

Roxie43 and China like this
katiegrace1027

Posted by @katiegrace1027, Jun 3, 2012

I don't know any thing really about chronic pain so I don't know how much help I can be. Have you tried alternative treatments like acupuncture or massage therapy? I don't know how much it helps but I don't think it can hurt. I also think I have heard of people taking anti depressant medications to manage pain.

hopingforacure

Posted by @hopingforacure, Jun 3, 2012

Thank you for replying. I need help in being able to start a discussion with people who have chronic pain. I'm not very computer sauvy. I thought I had posted 3 different messages, but didn't get any replies. Maybe I'm not doing it right. Thought if I replied to someone who is doing this successfully, they might be able to help me do this. I really need some support. The pain is so extreme.

katiegrace1027

Posted by @katiegrace1027, Jun 3, 2012

Well I don't know what you did before but you made a discussion thread now so you should get responses soon. Try looking at this link, it's another discussion that someone started, you might find some help there

https://connect.mayoclinic.org/discussions/88-let-s-combat-pain

hopingforacure

Posted by @hopingforacure, Jun 3, 2012

Thank you. I am desperate to find relief from the pain. I pray that you find the help that you seek.

bjg

Posted by @bjg, Jun 4, 2012

So sorry about your pain.Do you get tired a lot too? I end up using like arthrits muscle creams alot. Am presently on an antibiotic for lymes and hope that will help me feel better. At least I'm having a day once in a while to feel good. Can let you know as time goes on.

hopingforacure

Posted by @hopingforacure, Jun 5, 2012

Some days I don't feel like I can make myself move. Other days, I have limited energy and then once every couple of weeks, I feel more like my old self, but it never lasts. Up and down, up and down. I miss my life.

kalflen likes this
blueshouse

Posted by @blueshouse, Jun 30, 2012

Me to

ldb

Posted by @ldb, Jun 19, 2012

Greetings: I have been dealing with chronic pain since 2006. It took me 2 years of fighting ith insurance and for the opportunity to be seen at the Mayo Clinic. By the time I was able to be seen, things had gone from bad to worse, and worse to horrific. Mayo took me on and performed dozens of tests covering three areas of concentration. I was also up to 300mg of Morpnine and 100Mcg of Fentanyl. That wasn't living and I still had horrific pain. After a couple of months one wonderful doctor up there put the story together for me. I attended the Pain Rehabilation Center(PRC) and tapered off all of the opioids. Wasn't a lot of fun but I have my brain back now. I still have the pain and it worsens because I have a degenerative spinal cord/ nerve root syndrome. I will begin a regimate of testings, evaluations and consults. Without the Mayo Clinic, I would have passed on but now facing new challenges. I am in good hands!!! I am a good shoulder to lean on as friendships help those in continual pain. God Bless.

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blueshouse

Posted by @blueshouse, Jun 30, 2012

I have dealing with chronic pain since 1994. It now has taken over my life. The doctors here in Tn just think everything is in my head. I have been diagnosed with fibro,Rls, Degenerative Disc Disease with bone spurs pushing against nerves ( I had back surgery but to me it has made it worse) Arthritis, Ostoearthritis. Any help would be appreciated.

kalflen likes this
ldb

Posted by @ldb, Jul 3, 2012

Hi Blueshouse: sorry to hear about your pain. That saying is so reassuring isnt it BUT coming from someone who is in constant pain, it should mean a little more. Too bad pain doesn't have color so doctors could see it and believe us.

I am a BIG believer in Mayo and their doctors. Their wonderful doctors were able to figure out what had happened to me. Our wonderful doctors here locally had given up and we just keeping me comfortable bu using pain killers. It was no simple journey even when I was admitted to the Mayo health system. There was test after test after test. Then, one outstanding doctor put all of the pieces together for me. So, with diligence, persistence and insurance, you can get into their health system.

I am once again back into their health system due to intractable pain. At this stage people sometimes ask " why me???". All I can say is be strong and do the very best with everyday that we are given. It's hard I know, but hang in there and continue to search for solutions. They are out there, some with Hope and others with only Answers. Knowing is better than no knowing! Faith, Hope and Love to you and remember that the greatest of these is Love.:-)

Just me
LarryB

LDB likes this

Posted by Anonymous-c67251e0, Jul 23, 2012

I have suffered with fibromylgia and psoriatic arthritis for many years. I now also have deteriorating disc disease. I am taking Embrel injections once a week. It lets me feel better. I also take cymbalta for my fibromylgia. I also take 600mg of ibuprofen 3x a day for my neck and back. Some times I hurt any way. Then I have no energy. I spend the day in bed. Maybe you can look into these drugs. I can not live without them. Hope this helps.

jami

Posted by @jami, Jul 5, 2012

LDB,
I am sorry to hear about your pain. I have been dealing with about the same since 2004. How were you able to be seen by the Mayo Clinic? I wish you the best of luck with your pain.

ldb

Posted by @ldb, Jul 5, 2012

Jami:

I am TRULY sorry for your pain. Each of us carry a special burden that few can comprehend. I can not understand your pain and you don't understand mine. Depending on what we find out over the next 5 weeks, I could be nearing the end of my options and my journey. God will do what God will do and that's fine now.

Two years ago I was using 300mg of Morphine and 100 Mcg of Fentanyl a day. This was not living!!! I had exhausted all of the local Neurologists and I even had an SCS ( spinal cord stimulator) installed....which did NOT help me.

We spent 18 months fighting with our Insurance to allow us to go " out of network"....up to Mayo. We had two letters from Neurologists as required by them. Then they changed their rules and we had to start over.

By the grace of God, a doctor friend, wrote a referral for me to see my first doctor at Mayo. This is what got me into their system. There was test after test, consults, and additional follow ups. Then one fantastic doctor in the Pain Clinic put the story together for me. He told me to get off the narcotics or they would kill me. So, I took the hard route and attended the PRC Pain Rehabilation Center. I came off the drugs while learning alternative techniques to manage pain. (withdraw sucks :-))

It's been two years since I used any narcotics but now my spinal cord syndrome has progressed and I need additional medical help. It seems a long story but this is actually the short version.

My lessons to all would to be persistent. Tell your story clearly to Mayo so they can understand your situation. These doctors are incredibly busy! Finally, be honest as you describe your symptoms to them. They are experts and they can see right through us :-)!!!

Good luck to all. 🙂

LDB likes this
ritab3113

Posted by @ritab3113, Jun 27, 2012

I live with constant pain also, I have been told I have fibermyology (sp?) which means they don't know what is wrong with me. So far I have lived without going on medicine, I just know that when I am busy I don't think about the pain.

jami

Posted by @jami, Jul 5, 2012

I would like to join this discussion. I have had chronic back pain since 2004. Now I am suffering chronic joint pain since 2009. I haven't worked since 2009. Where is your chronic pain?

bjg

Posted by @bjg, Jun 4, 2012

As someone else wrote, massage is so temporary and who can afford it every week? Usually feels great at the time and possibly the next day. I take an anti depressant...can't say it's helped with pain at all.

china

Posted by @china, Jun 7, 2012

bengay n steroids help

hopingforacure

Posted by @hopingforacure, Jun 18, 2012

I have begged for steroids and my doctors say no way. I feel that they would help me, but don't know how to get the doctors to change their minds. Thank you!

roxie43

Posted by @roxie43, Jun 19, 2012

Request another opinion because patients have rights

hopingforacure

Posted by @hopingforacure, Jun 19, 2012

I've tried to get into Mayo. Actually thought I was going and then got turned down. My doctor tried to refer me. No luck. Have left a message for my surgeon in another state to see if he can help me. I may have to go back there instead of Mayo which is okay. It's just way further to travel than MN. I've always been super healthy and haven't had to deal with medical situations before. I'm astounded that everything takes so long. I had heard of chronic pain issues that people can have, but had NO idea of how truly miserable you can feel. I'm learning many lessons right now. It seems like no one really cares. Do you run into that? I end up feeling like I'm an inconvenience rather than a patient.

roxie43

Posted by @roxie43, Jun 19, 2012

Go elsewhere! No one should be living like this...
Some times You have to be your BIGGEST advocate
Stay strong and remain focused.
Hugs

Bettyann likes this
piglit

Posted by @piglit, Jun 19, 2012

Listen to Roxie's words you need to go somewhere else and get the help with the pain that you need Hugs Piglit

Bettyann and Roxie43 like this
ritab3113

Posted by @ritab3113, Jun 27, 2012

Just show up at 6:30 AM and get signed in and they will work you in. We did this with our neighbor and they did see him.

bettyann

Posted by @bettyann, Jun 21, 2012

Hi Hoping ...actually, be grateful that your dr wasn't all that quick to give your steroids... Predizone can be very addictive...plus give you a high and then yo ucrash and want more. I am so very sorry, Hoping, that you hurt... please know I wish you well.

kalflen

Posted by @kalflen, Jul 1, 2012

I just finished up a series of appointment at mayo. They told me that I have had way too many steroid injections. I have had about 9 in the past year. I really did not get much relief from any of them. Mayo dr told me that that was way too many injections. They recommend only 2-3 MAX per year. The steroids can damage the adrenals which produce essential hormones. Injections are palliative not curative. Stay away from steroids if possible. They do nasty things in excess.

dkmeow

Posted by @dkmeow, Jun 5, 2012

Try talking to ur doctor about gabapentin it's a nerve medication non narcotic. It's a possibility that ur pain is stemming from some undetected nerve damage. It'll say once u look up the drug that it's for people who suffer from restless leg syndrome or for diabetics that have pain in their legs, but my doctor thought I should try it to help with my FMF (familial Mediterranean fever). Which is also heavily chronic pain but from my lower back/abdominals down to my feet. If u don't mind- what is ur familial origin?

Posted by Anonymous-b3c55b44, Jun 5, 2012

German (Prussian), Irish, Welsh, a splash of American Indian and probably others. I tried Gabapentin, but it didn't work for me. I'm working on getting an appointment at Mayo Clinic. Should be hearing back next week with a date. I'm trying acupuncture. Don't really know what to think yet. I'm hoping it will help.

neverceasing

Posted by @neverceasing, Jun 18, 2012

I also tried Gabapentin; it work for a little while but I did not like the side effects. I am on Lyrica right now, and it appears to be doing the job.

kalflen likes this
orphanbud

Posted by @orphanbud, Jul 23, 2012

My brother is nearly bed ridden lately from severe Rheumatoid Arthritis. Does this medication help with this?

joanneo

Posted by @joanneo, Jun 12, 2012

I take gabapentin for nerve damage after spinal surgery and it helps because when I do not take it I really see the difference but it also makes you very tired jodi

dkmeow

Posted by @dkmeow, Jun 6, 2012

I think you should go for genetic testing...how do u get an appointment at the mayo clinic I'm trying to find an FMF specialist to help me out

hopingforacure

Posted by @hopingforacure, Jun 6, 2012

Go to Mayo Clinic website, click on request an appointment and on the left hand side of the screen, there's a number to call. Or you can do it online. I called and was on hold for about 15 minutes, but once I got someone on the line, they took my information. I was told I would get a call back next week. I'm tired of not really knowing what's wrong with me. I want a real diagnosis by doctors I trust. I've known people who go there and they say there's no place else like it. Gives me hope, you know? The docs here aren't wanting me to go which I don't understand. Ego? Feel like they failed? Don't know, but everyone is entitled to a second opinion.

dkmeow

Posted by @dkmeow, Jun 6, 2012

Absolutely! I think you should definitely get a second opinion. They prob haven't tried hard enough to find results for you

Bettyann likes this
bettyann

Posted by @bettyann, Jun 21, 2012

Please listen to Roxie and whoever else strongly suggests you see another dr.... IT IS YOUR RIGHT... Do this to honor yourself... you deserve so much more.

frankee

Posted by @frankee, Jan 19, 2013

I think you should see a genetics Dr.

hopingforacure

Posted by @hopingforacure, Jan 30, 2013

What do they do?

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