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Chronic Pain members - Welcome, please introduce yourself

Posted by Kelsey Mohring @kelseydm, Apr 27, 2016

Welcome to the new Chronic Pain group.

I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Why not take a minute and introduce yourself.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

vickirobinson1952 | @vickirobinson1952 | Mar 12 9:54am

Hi! My name is Vicki and my husband suffers from severe chronic pain that limits his activity a great deal. He was an athlete in his youth and younger adult life, so to be forced into a sedentary existence is very hard on him. (His pain is only partially caused by his past athletic endeavors.) We are retired, and this is not the retirement we worked and saved and planned for.

I am hoping to find understanding and perhaps do some networking on this group.

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1 reply
sandrahan | @sandrahan | Mar 13 7:38am
In reply to @vickirobinson1952 "Hi! My name is Vicki and my husband suffers from severe chronic pain that limits his..." + (show)
@vickirobinson1952

Hi! My name is Vicki and my husband suffers from severe chronic pain that limits his activity a great deal. He was an athlete in his youth and younger adult life, so to be forced into a sedentary existence is very hard on him. (His pain is only partially caused by his past athletic endeavors.) We are retired, and this is not the retirement we worked and saved and planned for.

I am hoping to find understanding and perhaps do some networking on this group.

Jump to this post

Hi Vicki,
Does he have a diagnosis? I find that a good physical therapist is amazingly helpful! They can help one know what one can and should be doing, and what to avoid.
❤️
Sandy

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luck3 | @luck3 | Mar 13 10:12am

My name is Sandy
I have chronic pain from Crohns and RA. I’m waiting to start Remicade in on the 21. I’m taking Tylenol and Prednisone at this time. My PC doc will no longer prescribe pain meds because she doesn’t believe in them. I’m waiting for appointment with a Pain clinic. I’m so tired of hurting.

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Mentor
Rachel, Volunteer Mentor | @rwinney | Mar 13 7:07pm
In reply to @kathleenega "Hello! I'm 58, diagnosed with fibro with a significant fatigue component in 2022, after a year..." + (show)
@kathleenega

Hello! I'm 58, diagnosed with fibro with a significant fatigue component in 2022, after a year suffering with no answers. Just having the diagnosis was a relief and helped improve my mood. I am currently on Cymbalta, Lyrica, low dose naltrexone, amitryptiline, and thyroid meds. I tolerate all well and my pain was well controlled until recently. I have adjusted my thyroid meds, added some CBD and take flexeril at night but I'm still achy. I think at the root of my issues is lack of high quality sleep. Nothing I take or do takes me to restorative sleep. I am still working and need to do so for the next few years, and that weighs heavy on my mind. Glad to be here and hope you all are having a good day today.

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Hey there @kathleenega, welcome to Connect. I'm glad you're here, too! Sorry to hear about your health struggles. Nothing worse than not being able to catch a restful nights sleep to be able to help restore the brain and body, especially if you still work. I've been where you are and it is really difficult. Retraining the brain into a new sleep pattern takes time, but with repetition and building new or different sleep habits, it can be possible.

One aspect which helped me was to begin developing a structured bedtime routine so my mind and body got used to consistency. Good sleep hygiene habits like omitting certain foods and drink by a certain time, reducing blue light from devices or TV 1 -2 hours before bed, reading a light hearted book or doing a mindless puzzle, taking a hot bath no more 2-3 hours before bed to allow for body temp to cool down, keep stress reduced by not watching the news or talking to stressful people before bed, have a cool, comfortable, dark sleep space, trying white noise like nature sounds or a fan... I could go on, but don't want to bore you!

In what ways, if any, have you tried to apply change to your routine or bedtime habits?

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1 reply
ripley | @ripley | Mar 14 10:13am
In reply to @sandrahan "Hello, Sandra here. I was diagnosed with fibromyalgia in 2021 following a weird virus ( not..." + (show)
@sandrahan

Hello,
Sandra here. I was diagnosed with fibromyalgia in 2021 following a weird virus ( not COVID). My lumbar spine is fused from arthritis which seems to aggravate the surrounding muscles. One thing my PT performed recently was dry-needle of the lumbar spine, and it significantly reduced pain!!
I take 900 mg. Gabapentin and 60 mg Cymbalta. It all helps.
The virus also left me with burning mouth syndrome. I also avoid gluten.
I’ve learned acceptance and speaking truth and absolutely the need for discussions with my doctors and PT.
Thank you for sharing your experiences and ideas!

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I also got Fibromyalgia in 2021, after Covid. I'm afraid to try meds but the painful flares are getting to be too much. Did you ever take Gabapentin alone and, if so, did that help reduce your pain? Did you start at the 900mg dose or work your way up? I also have chronic insomnia and wonder if the Gabapentin helps you sleep? I'd prefer to avoid Cymbalta for many reasons. I tried a gluten free diet for 5 months and didn't notice any improvement. Thank you.

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sandrahan | @sandrahan | Mar 14 1:04pm

Hi! So sorry to hear about your similar experience! My neurologist first diagnosed me with “post-viral syndrome “, so he prescribed Cymbalta first. After about a year my PC sent me to a physical medicine Dr. who suspected fibromyalgia, so she then added the gabapentin. I began with just one 300mg, and soon progressed to 600. My primary care bumped me up to 900. If I have a flare, I can increase my dosage.
I have had absolutely no side effects from the gabapentin ( unless I increase it for a flare and then it can add to fatigue).
Another thing that helps reduce pain is using Tens 7000 several times a day. You can order them online and your PT can set them for you. If you are not familiar with them, they are simply external electrodes that may work to relax tension in muscles.
I wish you some pain relief!
Sandra

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kathleenega | @kathleenega | Mar 21 7:27am
In reply to @rwinney "Hey there @kathleenega, welcome to Connect. I'm glad you're here, too! Sorry to hear about your..." + (show)
@rwinney

Hey there @kathleenega, welcome to Connect. I'm glad you're here, too! Sorry to hear about your health struggles. Nothing worse than not being able to catch a restful nights sleep to be able to help restore the brain and body, especially if you still work. I've been where you are and it is really difficult. Retraining the brain into a new sleep pattern takes time, but with repetition and building new or different sleep habits, it can be possible.

One aspect which helped me was to begin developing a structured bedtime routine so my mind and body got used to consistency. Good sleep hygiene habits like omitting certain foods and drink by a certain time, reducing blue light from devices or TV 1 -2 hours before bed, reading a light hearted book or doing a mindless puzzle, taking a hot bath no more 2-3 hours before bed to allow for body temp to cool down, keep stress reduced by not watching the news or talking to stressful people before bed, have a cool, comfortable, dark sleep space, trying white noise like nature sounds or a fan... I could go on, but don't want to bore you!

In what ways, if any, have you tried to apply change to your routine or bedtime habits?

Jump to this post

Hello Rachel! I did establish a night time routine that helped immensely. I shower at night and read before I go to sleep. It also helps lighten my morning routine before I go to work. And I usually have no trouble falling asleep. It’s getting that deep restorative sleep that I can’t get to. I dream a lot. I wake up unrefreshed and yawning. It’s crazy and frustrating. I feel that if I can unlock this deep sleep puzzle, lots of my other fibro symptoms would be lessened.

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kathleenega | @kathleenega | Mar 21 7:45am
In reply to @elizadolittle "Have you tried a good soaking bath before bedtime? If you have a jacuzzi style bathtub,..." + (show)
@elizadolittle

Have you tried a good soaking bath before bedtime? If you have a jacuzzi style bathtub, that's even better. I know what you mean about knowing what the problem is. Some people swear by Tumeric that you get at the health store. Do you think you have any food allergies? All the Best.

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Oh a jacuzzi tub would be so nice! I have a tub but it is too low so I take a warm shower every night before bed. It helps. Still doesn’t get me to the deep sleep zone though.

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kathleenega | @kathleenega | Mar 21 7:47am
In reply to @jimhd "Sorry for the suffering you're enduring. I've had two spinal decompression surgeries - a drop in..." + (show)
@jimhd

Sorry for the suffering you're enduring. I've had two spinal decompression surgeries - a drop in the bucket.

I have CIDP, with burning pain in my feet and ankles and have tried more medications than I can remember. You and @kathleenega have more than your share.

Amitriptyline helped my facial pain, and it seems to have cleared up. In 2017 I had a spinal cord stimulator implant for the neuropathy, and it was wonderful!! 80% relief! For the first year. From there it slowly lost its effectiveness and after 4 years, it was and continues to be hard to tell if it's helping at all. But I leave it turned on for whatever relief it does give.

Kathleen, have you had a sleep study? I had one years ago and when I got my CPAP machine I averaged 12+ hours of sleep per day the first month. I was very much sleep deprived. I've always used a full face mask, over my nose and mouth, because I've been a mouth breather all my life - that is until I had a deviated septum corrected. All of a sudden I could breathe through my nose. What a difference! But I still breathe through my mouth at night, so a nasal cushion is useless. I'm usually claustrophobic, and thought there was no way I'd be able to tolerate the mask, but I surprised myself. I guess my need for sleep trumped claustrophobia.

It seems that I've heard that spinal cord stimulators sometimes treats fibromyalgia. Maybe I'm remembering incorrectly. Lyrica was the first medication that actually helped my pain, but I ended up in the hospital with a reaction to it. Bummer.

My siblings have had multiple back surgeries and except for the decompressions, I seem to have dodged the family bullet. The decompressions were a direct result of a fall that caused compression fractures in the same areas.

So many medical conditions need research breakthroughs. And the day may come when it's our turn.

Jim

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Hi @jimhd ! I did have a sleep study, have mild apnea but got a CPAP machine anyway. Tried it for a while, got a facial infection then stopped. I’m back on it now and am hoping for better outcomes this time around. Cross your fingers!

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lavendercottage | @lavendercottage | Mar 21 4:37pm

Hi, I’m Catharine. I have a lot of issues. They have seniors Centers here but nothing for people with disabilities (yet). I’m glad to find an online group for people facing these challenges

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