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I don't have Fibro...

Jan 06, 2016 9:02 AM

Hey y'all, I have been hanging around for a couple of weeks. I am needing to tell you that I don't have Fibro or anything autoimmune disease. This being said, I really needed to tell y'all. I really do understand chronic pain, as I have started dealing with this last six or seven years.My neck causes most of my pain, with some joints like my hips from arthritis. All of this has taken a huge toll on me personally, professionally, relationships, etc.
I hope that I can support you all, as I personally have found y'all have so soo wonderful to me. My pain levels have been very high lately. There are some things happening to the disc above and below my fusion. I want to be able to talk about it , and not sound whiny like oh she really does not understand cuz she don't have ..etc...
I have a Loving husband whom when I do share if I am having a particularly hard day... Wants me to run to the ER or something. He doesn't want me to hurt. I have shared with you that I don't use narcotics. My doctor prescribes them only for extremely painful times and with the past addicted period of my life even nine years in my past...I am still scared it will happen again. So, I use Icepacks, stretching, meditation, try try try to keep my stress levels in control. I found out to that continued reliance on narcotics for me increased my pain. When I weaned off of them I realized I wasn't walking around all day with a pain level of 10. I was amazed when I took aspirin for a headache and it freaking worked.
Okay, I have shared. I hope I have not offended anyone here. I need the support more than ever now. I am 52/I have suffered more depression in the past 2/years. I have no life. I have daily manageable pain but the anxiety of everything has been bad.
Thank you for listening and its one of those days when I am not feeling physically good. Upper torso pain and spasms. Well.. Now I will wait to hear from anyone.Thanks, Love and Blessings, Terri

Jan 06, 2016 9:18 AM

Terri, it doesn't matter if you're "officially" diagnosed. You have made a wonderful contribution to our community, and have been completely understanding and kind. I also don't have fibro, and that's okay. Chronic pain is chronic pain, regardless of cause, so thanks for telling us your story. ❤
Also, you're not whiny. We all have bad days. I, too, am having a bit extra pain (only put like 5 layers of pain cream on my shoulder blade so far...) and it can help to talk them through, and have a voice.
I care about you a lot, and I hope the pain levels will be more manageable soon.

Jan 06, 2016 9:24 AM

Terri, we understand. I also don't have fibro, but I truly understand having daily chronic pain.
Love ya,
Amanda

Jan 06, 2016 9:27 AM

Yeah?oh thanks Ferret... You also reminded me of my Volteran pain Gel..I can apply that!!!! Ty ty ty for reminding me. I have been aching and now my thighs ache deeply, I saw my doctor on Monday, she thinks its menopausal like cause its cyclic,,,so use Zanaflex for stuff like that but it's not hitting it at all, aspirin and alternatively aleve help so, she called in Paragon Forte for me, Alwayz mentioned it earlier , I looked it up.... So she called it in for me. I am able to get it today finally asI have had some problems verifying my insurance..etc thank you for your loving reply! Made the world of difference! Love and Blessings, Terri

Jan 06, 2016 10:29 AM

Terri. We don't discriminate.. Ha..it's OK if your a little different from the rest us. Luckily for you we don't have a cool kids and a not cool kids club. We just have family here. Although your probably that one cousin that grandma always tells us about.. Lol you know..she's the mailmans kids..lol..but we love you anyway...
👫👪

Jan 06, 2016 10:29 AM

Girl pain is pain! Its funny you said that about pills i have had more success with vitamins less pain and no zombie symptoms! I was taking them first thing in morning every three hours at work than dose of reality hit me i am addicted to them of course i still have pain but straightened that out what works for some doesnt for others! Ivam a anxiety sufferer just try and work it out if not a lorazepam is my go to girl lol

Jan 06, 2016 11:15 AM

Lol, Newfibrogirl, I am the mailman's kid,lol,thanks to all y'all! Now If I can get this dang insurance problem fixed with the pharmacy I can longer the muscle relaxer for my thighs! And it's raining here now, and NOW I am whiny!

Jan 06, 2016 12:21 PM

Terri, it makes no difference whatsoever what diagnosis you do or don't have. You are in pain as are the rest of us. I'm glad that you shared with us. I understand your fears. Many years ago, I got hooked on Vicoden because my doctor just kept giving it to me with refills and I took more than prescribed because the pain was so bad. I was weaned off, went through horrible withdrawals and sent to pain management. I have used my medication to the letter of the prescription and I also find that since the pain is way higher than the dose of meds, I don't have any of the euphoric effects and I can go days with no pain meds and have no effects except a rise in pain levels. I can understand the horrible depression and anxiety. There are many days where I have said that the emotional part of all my problems is almost worse than the pain. Many times it is. Terri, you have been a wonderful, upbeat, welcome, compassionate and uplifting member of this pain family. Know that you can lean on me any time. You can call me or text me or email me any time day or night. I don't care if it's 3am and I just fell asleep after being up for days, I'll stay with you and chat as long as you need. You have provided much insight, many prayers, several chuckles (Finding Nemo.... Intervention!!! LOL!!) and a sympathetic ear for all of us. I'm here. Hang in there. I'm sending you lots of love, gentle {{{Hugs}}} and prayers that you have a better and more peaceful week ahead. One second, one step, one moment at a time. I'll hold your hand the whole way, I promise, I know together we can all get through to the other side of these bad days. Love and light.💕🙏🏻🌻

Jan 06, 2016 12:23 PM

Alwayz i have to tell you youre posts are always the most sweet uplifing! You have a beautiful soul!

Jan 06, 2016 12:31 PM

Thank you so much, Michelle. I appreciate that more than you know.💕🙏🏻🌻

Jan 06, 2016 12:48 PM

Awe Alwayz I was really waiting for you to post. Thank you so much. I am going to go lay down and nap for a minute. Love Terri

Jan 06, 2016 4:07 PM

Terri, I'm impressed you weaned off the narcotics and felt better. Well done! They reallly can increase pain. This is important information to share with others. How did you manage to wean them off?

Jan 06, 2016 5:16 PM

I agree, I've been noticing that even tho I am in horrible pain, the narcotics don't really help sometimes. But since I've been on them for 10 years I'm worried. Up until the last year and a half, I was able to take them or leave them. Always said I would not be an addict. But lately I started noticing I am getting withdrawal symptoms if I don't take them. But I am in so much pain, and I push myself every day to work cause I'm a single mom. I don't know what to do.

Jan 06, 2016 5:27 PM

Madre dependency is different than addiction. Our bodies can get withdrawal symptoms from almost anything if we use it long enough. Addiction, at least in my opinion, is the emotional part where one is looking forward to having something that isnt needed.
It sounds to me like you don't want to have to take them but your body tells you otherwise. I would talk to your doctor about the withdrawal symptoms you have been experiencing and ask what can be done about it. You might have to move onto a different medication for a while so your body can detox from that one. It won't be easy but we will be here for you

Jan 06, 2016 5:48 PM

Goto...thank you! That does make me feel better. Your right, cause I don't take them to get high or just because. I had a boyfriend who was an addict and he would steal my meds no matter how much he seen I would hurt without it. I got rid of him...but I guess that's what I always feared I would turn into. But I would like to get back to when I could take or leave them. So I am just going to start cutting them back slowly till I get where I am comfortable with them again.

Jan 06, 2016 6:27 PM

Madre it is mind over matter with slowing down on them i got a dose of reality when i said one day omg i forgot my pills i need them lied at work left early went home and said what the heck am i doing than said im done started supplements and yoga meditate I felt so much better ! Trust me i did want them when i was in pain but i had a close family member die from this ..some vitamins can help with the anxiety from it and whoever takes pain pills here please dont think im judging you some just have so much pain and need to function! I just was becoming addicted to them thats my issue and if i didnt feel worse afyer getting them out of my body they were not helping me!

Jan 06, 2016 6:30 PM

Michelled, thanks I just joined a gym with my son, so I will try that too.

Jan 06, 2016 6:34 PM

That is awesome just remember to pace youreself!

Jan 06, 2016 10:22 PM

Terri, I don't have fibro either. I have EDS -HT, and schuermann's disease. Like ppl said, pain is pain, no matter what the name is, pain is pain. But I understand by being one of the "others", that you feel like you can't relate bcz you don't have fibro. But you can relate, bcz you have pain.... at least that's what I keep telling myself. ..... hope that helps....😊😙

Jan 07, 2016 7:10 AM

Ahhhh the zebra speaks with the giraffe!! Lol, thank you leftfeetstripes!!!
I wanted to say thank you all of you, I need the support and I freely and UNCONDITIONALLY give it back to you..Much love and Blessings, Terri

Jan 07, 2016 7:38 AM

Dr.Marc, sorry it took me long to reply to your questions r/t how I weaned off narcotics, etc. Well, I did the absolute worse thing anyone who has been on large daily doses of narcotics... I went freaking COLD TURKEY. Which by the way, I would never ever encourage anyone to do. I went completely off, cold turkey . I refused any intervention by the medical arena at the time. Needless to say, I became ghastly ill. It lasted for weeks...I struggle enormously! The pain was excruciating. I had joined the 12 step group NA, I was convinced I was an addict and did everything I was told by them....I was in absolute physical and emotional agony. I did survive the withdrawal process, and worked those steps very every bit of effort I had. I had difficulties, whit knuckling it...with the emotions and yes my pain. So, instead of using again, the Lord intervened, I was directed to a physician who prescribed Suboxone.
I got into therapy and started Suboxone, which immediately affected my life in the most positive ways. Therapy therapy and anything they told me to do..(journaling, finding hobbies, Treating the underlying major reoccurring depression, relaxation and meditation,increasing my physical activities, etc.)
I had to learn to how to completely change the way that I spoke to myself. The continuous inner self dialogue, I would and did need to address my pain and how I felt in a truly loving way, and I deepened my relationship with my Heavenly Father.
All of this and more ,has helped me.
I feel blessed most days the pain levels are low,just kind of there,on the side line not the main attraction. It takes a lot of desperation and willingness to believe that there is a better way . I do have my version of a flare.....and I do everything I can ..and when I have hit the wall and all the non-narcotics method have not been effective...I go to my doctor, yes the one who prescribed my suboxone and I am given small quantities of Percocet.
Yesterday, was one of those days , I just needed to reach out and take care of Me...and I did. I remembered, from past experience to share, trust, and relax.This too shall pass.
Hope I answered your questions.. Thank you for asking me. This type of sharing, rejuvenates my soul and lessens my pain. Terri

Jan 07, 2016 10:16 AM

You're an amazing woman Terri!! Cold turkey is really tough. When I came off the Vicoden, I felt so horrible and had a lot of really bad withdrawals. However, once I was off them, I went to pain management and a neurologist and rheumatologist. After several EMG's, MRI's, X-rays, blood work, 29 surgeries, etc.. I was started on NSAIDs, gabapenten, neuronton and other medications. I have to say that the ones for nerve pain caused me horrible side effects and I had to come off of them. I was then send to physical therapy, I went (I asked to be sent) to a psychiatrist, massage therapy along with biofeedback, etc. I didn't get better. Actually, with the physical therapy, I ended up with an impingement in my shoulder and also a torn rotator cuff. I had surgery. A any rate, after 22 years, 29 surgeries and my joints deteriorating, needing fusions in my cervical and lumbar spine, the RSD, etc., there is no other otc medication that works for me. There have been times where they have put me on what they called a "drug holiday" to get one out of my system and see if something else works. I take the minimum of what they prescribe so that when I do take it, it helps me function. I have had times of taking my Father and Mother back and forth to appointments and doing shopping, etc. where I will not take my medications. (I won't take them and drive even though you'd never know I took anything. I won't take chances). So, I have my pain meds, can take or leave them but with pain levels of 8 on a normal day, I do take them. Sorry for rambling. Guess I just wanted to get that out there. {{{Hugs}}} and prayers for a peaceful day💕🙏🏻🌻

Jan 07, 2016 10:20 AM

Love you Alwayz, I am glad you are my friend!💕🌸love ,Terri

Jan 07, 2016 10:21 AM

I'll be your friend always and forever, Terri.. You're stuck with me now.. LOL!!! 😜😘😍

Jan 07, 2016 11:25 AM

Thanks a lot, Terri. Amazing what you went through! Interesting that suboxone helped you so much. We dont have it here but I'll ask around.
So from the single narcotic treatment you went to a multicomponent treatment plan. And now you seem to be a pain expert yourself.
Would you say the experience of chronic pain finally taught you something? things you wouldn't have learned otherwise.

Jan 07, 2016 4:08 PM

Terri, Up until 2008 my major pain was from OA & DDD/TMJD. Then everything else (AI) jumped on board from the 2010 pelvic mass. Do not think that OA/DDD makes you unable to understand chronic pain... It does!

My neck was fused from C4-C7 with a titanium plate & screws in 1992 & 1995. In the past two years, because of additional symptoms that have started, like the cervicogenic headaches, I have found out the C2-3, C7-T2, T11-12, & L4-S1 are collapsing and bulging, treating, etc. Trust me when I say you know chronic pain from just these diagnoses. They cannot fused my neck because of the risk of paralyzation or losing control to swallow &/or speak. They're trying to leave the other areas alone because they're saying after 25 years of fusions, they are finding it really causes further problems years later. We are praying my discs collapse straight in alignment without impinging nerves. I get migraines as well as the cervicogenic headaches, and muscle spasms, with paresthesias. I newsstand your pain, and yes it's real. (((Hugs))), prayers, & support from me and others! 😷🙏🌼

Jan 07, 2016 4:19 PM

treating = tearing
newsstand = understand

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