Feeling at my wits end with Chronic Pain and Fibromyalgia

Posted by Jen, Volunteer Mentor @sandytoes14, Aug 19, 2019

Usually I am not one to share much of my personal story but here goes…I have what is called moderate to severe degenerative disc disease, arthritis of the spine C3-C7 and lumbar spine, and Fibromyalgia. In the 20 years Ive had pain, I"ve been though many treatments including PT, tens unit, bio feedback,injections, nerve ablations, you name it. I'm prescribed Cymbalta 60 mg for Fibro and anxiety as well as 225 mg of Lyrica. I have been on and off various painkillers too. I'm currently on a long acting oxycodone of 13.5 mg and once a day one 15 mg of IR oxycodone. This has been my regime for a few months now as I switched from 15 mg IR oxycodone. Now for those who are worried about me ODing…I understand. I actually hype-vigilant about my meds. (And I have my hubby and son who watch) Years ago I was on 15 mg Fentanyl patch for 10 months and came off it in one month with no side effects.
Right now I'm really struggling with this rotten pain. I have no appetite, either can't sleep or nap during the day.

@parus

Hello there fibro friends. Seems the pain never tires. Then, there was some intestinal bug that has been brutal. On the up side-it seems to be subsiding and the bowels are calming. The relief now is not being a slave to the porcelain. Even missed my little grandson's Christmas program. Now that is pain I can't describe.

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@parus So sorry you have been under the weather with this pain and missing your grandsons Christmas program is the worse I know how you feel. Blessings to you parus

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@parus

Hello there fibro friends. Seems the pain never tires. Then, there was some intestinal bug that has been brutal. On the up side-it seems to be subsiding and the bowels are calming. The relief now is not being a slave to the porcelain. Even missed my little grandson's Christmas program. Now that is pain I can't describe.

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@parus Im glad to hear you are feeling better, but sad for you missing the little guy’s program

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@parus. Hey! It seems like everyone is off hibernating somewhere. I feel like I don’t know anyone now. A chance to meet some new “connections”. The holidays are rough for some of us, but I’m trying very hard to be positive by remembering the real meaning of the day. I’m so glad for this group-and even though I don’t write it a lot, I still remain connected every day. I wonder how you are today! ……..Karen

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Good morning to All! The holidays are difficult for me as well. Not only does the cold affect my pain symptoms but I miscarried a baby on Christmas Eve 17 years ago. That pain never goes away. I was only 12 weeks into the pregnancy so there was no determination of anything but for me it was still a great loss. We have 3 beautiful girls that I love with all my heart and wouldn't give up for anything, one of whom would not be here if it weren't for the miscarriage so I consider myself blessed. I had a great massage with a wonderful woman yesterday and feel like a whole new person! She was so gentle with me and tried a few different things to relax me and get my pain to lessen. Finding things to take care of ourselves and remembering that we need to take care of ourselves is one of the biggest things in dealing with pain. Remember that! We take care of everyone else in our lives but forget about ourselves.

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@karihammel My sympathy to you on your loss You never forget but your right it's important to take care of yourself it helps with the pain journey. I watched a beautiful Hallmark movie last night that. Was good but started to sink in that "why me" valley but did some exercise and feel better now . A massage sounds good

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@sandytoes14

@trishj46 I live in FL. They want us off opioids here too. My medical team seems to be handling the government’s guidelines well. I have seen drug seekers come in his office and he tells them no way!

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Jen—-I am having an awful time trying to find where I am right now—stupid, huh?? When I go off line I cannot find how to get back on–I just found this by accident! I go to google to find what I am to click on to get here. I type in mayo clinic connect and so much comes up, but nothing brings me here or other pages. What am I doing WRONG???? SOS!! I just got here by accident! Thanks ahead of time!

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@trishj46

Jen—-I am having an awful time trying to find where I am right now—stupid, huh?? When I go off line I cannot find how to get back on–I just found this by accident! I go to google to find what I am to click on to get here. I type in mayo clinic connect and so much comes up, but nothing brings me here or other pages. What am I doing WRONG???? SOS!! I just got here by accident! Thanks ahead of time!

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hi @trishj46, thank you for sending me an email using the contact form. I have replied to you by email offering some tips on how to navigate the website. To return to Mayo Clinic Connect, use the web address connect.mayoclinic.org.

On the homepage, you will see My Groups. These are the groups that you are following and the topics you're interested in.
You can also go to your profile to see where you have posted before. https://connect.mayoclinic.org/my-profile/
I hope this helps.

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@karen00

@parus. Hey! It seems like everyone is off hibernating somewhere. I feel like I don’t know anyone now. A chance to meet some new “connections”. The holidays are rough for some of us, but I’m trying very hard to be positive by remembering the real meaning of the day. I’m so glad for this group-and even though I don’t write it a lot, I still remain connected every day. I wonder how you are today! ……..Karen

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@karen00 Hello once again. Yes, I have been MIA. All in all I am doing well with all of the ups and downs. I am presuming you did not lose your apartment. How are things going for you health wise? I have undergone a cervical rhizotomy which has provided some relief as long as I do not try and do too much. Holidays can be rough. I made up my mind to try and not delve into the past as there is no benefit in doing so. I try doing little acts of kindness and/or thoughtful things. I have discovered it can be contagious in a positive way and not like the hellacious intestinal bug that worked a number on me trying to snatch away my Christmas spirit. I am happy and relieved it has past and did not take my Christmas spirit as it left. I surely have cleansed intestines at this point in time.
Good to see you are still connected. 🙂

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@trishj46

Jen—-I am having an awful time trying to find where I am right now—stupid, huh?? When I go off line I cannot find how to get back on–I just found this by accident! I go to google to find what I am to click on to get here. I type in mayo clinic connect and so much comes up, but nothing brings me here or other pages. What am I doing WRONG???? SOS!! I just got here by accident! Thanks ahead of time!

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@trishj46 He trish its Linda Lioness when you get back on connect I bookmarked it that helps me

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@karihammel

Good morning to All! The holidays are difficult for me as well. Not only does the cold affect my pain symptoms but I miscarried a baby on Christmas Eve 17 years ago. That pain never goes away. I was only 12 weeks into the pregnancy so there was no determination of anything but for me it was still a great loss. We have 3 beautiful girls that I love with all my heart and wouldn't give up for anything, one of whom would not be here if it weren't for the miscarriage so I consider myself blessed. I had a great massage with a wonderful woman yesterday and feel like a whole new person! She was so gentle with me and tried a few different things to relax me and get my pain to lessen. Finding things to take care of ourselves and remembering that we need to take care of ourselves is one of the biggest things in dealing with pain. Remember that! We take care of everyone else in our lives but forget about ourselves.

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@karihammel – It doesn’t matter how many years have passed since losing a baby- the pain never goes away. Like you, I’m grateful for our wonderful daughter born within a year of my loss at 26 weeks 40 years ago. I heard these children are called “rainbow children”. I have three great children- 2 of them have suffered with fibromyalgia since a young age.

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@astaingegerdm – I think my mom might be the only person who truly remembers each year of my loss. I tend to disappear during our Christmas Eve activities every year for at least 10-15 minutes just to be alone. I say prayers for my lost child, I allow myself to mourn the loss once again, and I thank God for my blessings and that I have a very special angel up in Heaven to look down on me and my family. Fibromyalgia is a beast. It rears it's ugly head at the worst moments – when you are stressed! It's brought on by stress, sometimes by weather, sometimes by activity, etc. Going to the Pain Rehab Clinic at Mayo was a Godsend, but it's still a struggle. The flares catch a person off guard and can be very difficult to get under control. AND you never seem to know if the pains you are having are fibro related or something serious that you should be going into the doctor or ER for. I also have a history of kidney stones (so far 6) but that pain is unbearable on my own, so I know to go in. At the age of 42, I've been through quite a bit. I had gastric bypass a couple of years ago to help with the fibro, other aches and pains, borderline diabetes, etc. I have lost 150 lbs which is great but had many complications through the process and they'd actually like me to gain about 5-10 lbs back at this point. I have had 3 kidney stones in the past year and ended up having my gallbladder removed because of gallstones and stomach issues that just weren't going away. One of the kidney stone surgeries and the gallbladder surgery were within a week of each other and the recovery time was incredibly LONG. Anyway, you don't need to hear all of this. I guess I got on a roll. I will pray for your children, as I pray for those suffering with pain often. Take care.

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@karihammel

Good morning to All! The holidays are difficult for me as well. Not only does the cold affect my pain symptoms but I miscarried a baby on Christmas Eve 17 years ago. That pain never goes away. I was only 12 weeks into the pregnancy so there was no determination of anything but for me it was still a great loss. We have 3 beautiful girls that I love with all my heart and wouldn't give up for anything, one of whom would not be here if it weren't for the miscarriage so I consider myself blessed. I had a great massage with a wonderful woman yesterday and feel like a whole new person! She was so gentle with me and tried a few different things to relax me and get my pain to lessen. Finding things to take care of ourselves and remembering that we need to take care of ourselves is one of the biggest things in dealing with pain. Remember that! We take care of everyone else in our lives but forget about ourselves.

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@karihammel The pain of miscarriage never leaves me either. I had 3. My first at 12 weeks. Then a year later so got pregnant again, this time had an extra surprise- My doctor couldn’t see twin 2 and when I fully aborted twin 1, I didn’t need a D &C. This was at the time my mom passed away. Three weeks after I buried my mom I lost twin 2. I never had any live births. But I have 3 wonderful kids. Two were terrific bonuses that came with my husband. The 3rd my ex husband and I adopted, ironically due to his infertility.
I had RNY gastric bypass in 2007. I’ve lost and kept off 135 lbs without complications thank goodness.

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@sandytoes14

@karihammel The pain of miscarriage never leaves me either. I had 3. My first at 12 weeks. Then a year later so got pregnant again, this time had an extra surprise- My doctor couldn’t see twin 2 and when I fully aborted twin 1, I didn’t need a D &C. This was at the time my mom passed away. Three weeks after I buried my mom I lost twin 2. I never had any live births. But I have 3 wonderful kids. Two were terrific bonuses that came with my husband. The 3rd my ex husband and I adopted, ironically due to his infertility.
I had RNY gastric bypass in 2007. I’ve lost and kept off 135 lbs without complications thank goodness.

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@sandytoes14 – I am so sorry for your loss as well. My husband has an aunt who had many miscarriages and they never did have any children. I think adoption was just not something they were interested in. I think it's an extra special way to give AND receive a wonderful miracle a life they wouldn't necessarily have otherwise. Congratulations on keeping the weight off. I seriously hope I keep mine off! I've been about the same weight now for almost a year so I'm hoping this is where I stay. Happy holidays to you!

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@lioness

@karihammel My sympathy to you on your loss You never forget but your right it's important to take care of yourself it helps with the pain journey. I watched a beautiful Hallmark movie last night that. Was good but started to sink in that "why me" valley but did some exercise and feel better now . A massage sounds good

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Hallmark is my favorite. I'm a total Hallmark Christmas movie junkie!! My husband and girls laugh at me all the time. They say the acting is bad and that the endings are all the same. I don't care. They make me feel good! Well, most of them. There are a couple of sad ones mixed in there but even those tend to have happy endings. Great job on getting exercise in! Super important! Keep up the great work!

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@lioness

@trishj46 He trish its Linda Lioness when you get back on connect I bookmarked it that helps me

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Lioness——where did you book mark it??? Do you go to google to find name of site? I am on now again by accident. I never got notified of your post. Thanks! but I am really confused!

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