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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.

covidstinks2023 | @covidstinks2023 | Apr 26, 2023
In reply to @johnbishop "Welcome @caroljune, I couldn't open the Boston Globe article either since it wants a subscription. I..." + (show)
@johnbishop

Welcome @caroljune, I couldn't open the Boston Globe article either since it wants a subscription. I found a couple of articles from Brown University that discuss the same app that the Boston Globe article mentioned.

--- Want to understand chronic pain? There’s an app for that.: https://alumni-friends.brown.edu/news/2023-03-25/soma-app
--- SOMA – an app to monitor bodily symptoms: https://www.brown.edu/carney/research-project/soma-%E2%80%93-app-monitor-bodily-symptoms.

Are you able to share a little more about the type of chronic pain you have?

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Hi I'm new.....

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Apr 26, 2023
In reply to @covidstinks2023 "Hi I'm new....." + (show)
@covidstinks2023

Hi I'm new.....

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Hi @covidstinks2023, I see from your previous posts you are dealing with quite a few different conditions. What is the most difficult symptom for you? Have you found anything for relief?

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covidstinks2023 | @covidstinks2023 | Apr 26, 2023

Pain all over & fatigue. Mobic 5 mg helps take the "edge" off some. I get massages, do epsom salt soaks, heat packs & voltaren gel. I am awaiting an appointment with a rheumatologist since my C-Reactive protein is high and I have so much bilateral osteoarthritis. Thank you for reaching out. My faith in God is what sustains me daily and keeps me going. God bless you!

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mikaylar | @mikaylar | Apr 27, 2023
In reply to @briarrose "Hi Kat! Wish I could say the same about Nurtec, it did not help me. That's..." + (show)
@briarrose

Hi Kat!

Wish I could say the same about Nurtec, it did not help me. That's great it is saving you! My neurology group is trying lots of medications but it's a really tough go for me. Right now I am back to Ubrevly and starting Aimovig injection for my prevention. I was taking Emgality for prevention. They want me to start a neuromodulating device also. Yikes!
Never had migraines until I hit my head in 2019. It is quite debilitating for me.
Marie

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No migraine medicine has ever worked for me. I have what they call New Daily Persistent Headache which I have had for 3 yr/9 mos, all day/every day. I also have migraines with aura but they are not classic migraines. I see neurologist tomorrow. Hoping he has new ideas for this debilitating life I lead. Sorry for everyone.

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briarrose | @briarrose | Apr 27, 2023

I am beyond sorry to hear of your horrific situation. I certainly know of daily persistent headaches. I had a migraine 24/7 from September 2020 to May 2021. No medication whatsoever even touched it. Seen by multiple neurologists, traveled out of state for opinions. Then suddenly the migraine stopped but only temporary. I fell & hit my head in 2019 and 1 year later had a massive "thunderclap" headache which put in the hospital. Those were my triggers and ever since 2019 I have some sort of head pain, in anyway, shape or form daily. Right now I don't have aura(s) but did have a "couple" of them...wondering if this is the next "thing" to deal with. I wonder what happened 3 yrs./9 months ago which set you on this horrible life path? I was actually thinking the other day that my CGRP was "giving" me a migraine! It was that ineffective. B/c of heart disease can not take the triptans.
People don't really know exactly what it is we go through. A migraine is a neurological disorder. Not a simple headache! I could ask you lots of questions...did you try "this" or "that"? Good luck with the neurologist tomorrow. Remember you are your best advocate in your medical care! Keep me posted mikaylar.
I certainly care!

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covidstinks2023 | @covidstinks2023 | Apr 28, 2023

Friends, I don't know if all you had Covid, but, it made my headaches worse for several weeks. I have had migraines since elementary school that went undiagnosed until my late teens. I currently use Zomig (prescription) which will knock out a migraine for me. I am currently taking Curaphen extra strength (it's natural by Euromedica) for the daily headaches and it is helping me tremendously. It has Curcumin and Boswellia in it. I believe Amazon carries it. As you all know, any headache can go into a migraine. Certain foods, sinus infection, allergens, perfumes & barametric weather change can bring on a migraine. My heart goes out to you all. Daily headaches & migraines are debilitating. Praying for you & God Bless.

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katcollins | @katcollins | Apr 28, 2023
In reply to @briarrose "Hi Kat, So sorry to hear of your battles. I never head of FMD seizures with..." + (show)
@briarrose

Hi Kat,

So sorry to hear of your battles. I never head of FMD seizures with migraines. How awful!
I also believe I have fibromyalgia but never diagnosed. From what I am reading since developing migraines there are lots of medical conditions related, or associated, with migraines and I kept reading the same ones over and over. Fibromyalgia is certainly one of them. I have had vertigo in my life but not with my migraine condition. Vertigo is so debilitating. I literally would have to crawl on the floor to try to get to my bed. I can imagine it's a nightmare for you. In the 1990s I had 3 very short episodes of wavy lines in my eye sight. I actually thought I was having a stroke...but later learned it was "ophthalmic migraines". That was the extend of my migraine condition. I have 3 first cousins, all sisters, who had migraines since they were teenagers. I now was told there is a strong "genetic" component to migraines. One is in her 70s and they are abating - the other two are in their 60s and no longer suffer from them. I am certainly a late bloomer. As I said I hit my head in 2019...and then had a "thunderclap" headache in 2020. What followed was 9 months of migraines every single day. A nightmare. Things improved but then got worse so I am dealing with them daily. Medication changes left and right. I am 68 now. Yes, Botox might certainly me helpful for you. Look into it. Not sure if it would help me...my neurology team has never mentioned it as an option for me. Restarting my preventative - Emgality monthly injections. Are you on a preventative? Also, restarting Ubrevly but at 100 mg. vs. 50 mg. for an acute attack but it only works for a few hours. I have heart disease so I can not take the triptans.
Take care,
Marie

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I use neurtec as a preventative every other day. It can be used as a rescue or preventative medication. It has changed my life. My vertigo was so bad I could not walk. And I was over sensitive to light and sound. Now it is much more manageable.
Best of luck to you,
Kat

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covidstinks2023 | @covidstinks2023 | Apr 28, 2023
In reply to @briarrose "Hi Kat, So sorry to hear of your battles. I never head of FMD seizures with..." + (show)
@briarrose

Hi Kat,

So sorry to hear of your battles. I never head of FMD seizures with migraines. How awful!
I also believe I have fibromyalgia but never diagnosed. From what I am reading since developing migraines there are lots of medical conditions related, or associated, with migraines and I kept reading the same ones over and over. Fibromyalgia is certainly one of them. I have had vertigo in my life but not with my migraine condition. Vertigo is so debilitating. I literally would have to crawl on the floor to try to get to my bed. I can imagine it's a nightmare for you. In the 1990s I had 3 very short episodes of wavy lines in my eye sight. I actually thought I was having a stroke...but later learned it was "ophthalmic migraines". That was the extend of my migraine condition. I have 3 first cousins, all sisters, who had migraines since they were teenagers. I now was told there is a strong "genetic" component to migraines. One is in her 70s and they are abating - the other two are in their 60s and no longer suffer from them. I am certainly a late bloomer. As I said I hit my head in 2019...and then had a "thunderclap" headache in 2020. What followed was 9 months of migraines every single day. A nightmare. Things improved but then got worse so I am dealing with them daily. Medication changes left and right. I am 68 now. Yes, Botox might certainly me helpful for you. Look into it. Not sure if it would help me...my neurology team has never mentioned it as an option for me. Restarting my preventative - Emgality monthly injections. Are you on a preventative? Also, restarting Ubrevly but at 100 mg. vs. 50 mg. for an acute attack but it only works for a few hours. I have heart disease so I can not take the triptans.
Take care,
Marie

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Hey Briarrose, Daily headaches/Migraines do along with fibromyalgia for me. I have had fibromyalgia for 27 years. Some days are harder than others. I'm so sorry you are going through this. Love, Hugs & Prayers....

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missannie42 | @missannie42 | Apr 28, 2023

Hi! This is my 3rd attempt at writing an introduction. Lost the other two.
I’m 81, severe pain from corrective spine surgery in 2013. Medication and SCS have not helped so I can have a decent quality of life. RA and Lyme disease damage cause more problems. Love my hubby, kids, dog and garden.
Thanks to all of you for being here.

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Apr 29, 2023
In reply to @missannie42 "Hi! This is my 3rd attempt at writing an introduction. Lost the other two. I’m 81,..." + (show)
@missannie42

Hi! This is my 3rd attempt at writing an introduction. Lost the other two.
I’m 81, severe pain from corrective spine surgery in 2013. Medication and SCS have not helped so I can have a decent quality of life. RA and Lyme disease damage cause more problems. Love my hubby, kids, dog and garden.
Thanks to all of you for being here.

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Hello there @missannie42, 3rd time is a charm! Atta girl. I am sorry about your pain. Quality of life is loosely defined based on circumstances, but grabbing on to those things you love, that bring you joy, is the best medicine. I love my perennial Hosta garden. They bloom and grow like clock work and that brings me joy! What type of gardening do you do? Are you able to moderately work in your garden while managing your health symptoms?

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