Hi, from an “old Newbie”

EzbG

Member
Joined
Sep 4, 2022
Messages
27
Reason
DX FIBRO
Diagnosis
08/1997
Country
US
State
CA
Hi all. I used to visit this site years ago, but didn’t post. But, after a recent reminder of the “whys” of what I was going through, I am back, but this time to ask for help. My story is kind of long. But I couldn’t really leave anything out.

I was diagnosed with Fibro in 1997, after being told for years by doctors that “you’re stressed out.” The doctor that diagnosed me, didn’t know I had researched and thought I knew what was the problem - and I simply described it as ‘feeling like you have the flu - the real flu that every fiber hurts - constantly.’ She asked a couple of logical questions, and then said, “have you ever heard of fibromyalgia?” We got it “under control” by concentrating on getting more sleep each night. Fast forward to 2001, and a slip & fall at work. I managed a team of inventory counters, and was walking along the checker area, and slipped and fell on drops of dish soap. 4 years later I had fusion surgery, which was deemed “a failure.” Nerves were damaged by the fusion hardware, and were continuing to have contact with the nerves. They removed the hardware. Pain levels were dramatically reduced - but… I got MRSA. 1.5 years later, they finally killed the MRSA, but left me with constant pain, 1/4 the feeling in my right hip/leg, and PTSD.
I still managed the Fibro okay, but oddly - I tended to forget I had it, because the back pain tended to overwhelm the Fibro pain, which is mostly controlled by opioids.
I still manage an inventory team, but its my own company. In January, I lost my 2nd in command to covid. That was the beginning of an incredible amount of stress. In my work, from Nov 15 to Feb 15 is very busy. My #2 used to manage teams, to give me time off. Now, it’s all on me. Silly me - I thought the building pain, lack of concentration, headaches, etc was signs of the extra workload. But when it didn’t recede by April, I just thought it was more damage to the disks that weren’t fused. Mid-year inventories were rough - and I was getting grouchy. The pain & exhaustion…. I was done. Told hubby I’m shutting down the company. At this same time, there were major changes going on at hubby’s work, and he was also tired, and getting grouchier every day. That was stacking on me. I was overwhelmed!
I had promised hubby in 2010 I wouldn’t commit suicide, but here I was - seriously thinking about it. I finally told him, about 5 weeks ago - “I am drowning, and I am not sure I have another surface in me.” It’s an odd analogy, but it was perfect. We spent time planning how to make things easier on me. AN answer came when he told his company of 36 years - “I am leaving.” Loooong story short - an investment company that owns his company, bought the (failing) competition. Instead of keeping them as competitors, they merged the 2 companies. Hubby‘s company was the better company - better software, better equipment, better methods, better service. But the other company had 5 times the people and so the powers the be decided they would go to the other companies equipment. Things were bad from the word go - the exact same 8 man team was capable of counting a major company grocery store in 6-8 hours pre-merge, was now taking 10-14 hours to do the same stores… that’s how slow the equipment was. After 11 months of that, he said “enough!”
HE is now my 2nd in command. He leads the team when I need rest. But I was still drowning. It’s not just the company - we bought a house 4 years ago, and it still isn’t together! Lots of projects still need doing. Some I can handle alone, but many need 2 people. He was always too tired to help. Every project needed doing, but so many straws, and this camel has a ”broken back.”
A family friend recently posted a meme on social media about Fibro, and comparing the pain of Fibro to other pain - kidney stones, appendicitis, heart attack, slipped disks, pain after surgery - and hubby saw it, and read it out loud to me. I walked to the kitchen where he was, stunned! It was the “smack in the forehead“ moment for me, then him. We realized! The constant fatigue, aches, pain so bad I got the cane out, because I couldn’t walk, the foggy head, the “word salad” - what I call the merging of 2 words, or switching the 2 word’s syllables. It’s the fibro… not the back getting worse.
We now have hope… and goals. Baby steps, to do & finish all the things that overwhelmed me. I now feel the life preserver around me. There will be a huge amount of teaching going on, as I am and always have been the “man“ of the house - I’m the mechanic, carpenter, maid, bookkeeper, business owner. He is the “tool hander.” I’m NOT belittling him - he was never taught, and I was self taught. I will guide, instruct, and hand tools, until I am better, then we can share.
I found this site a few years ago, and looked for it today. I’m looking to see what is “new” for fibro patients. I am NOT looking for medication recommendations, as I have gotten off more meds you can shake a stick at. I am looking to see what folks do to help - physically & mentally. What are you doing to get better sleep? Etc. Has any one tried accupuncture, acupressure, reiki, laser lights?
Thank you in advance for all suggestions!! Thank you for taking the time to read my “book.”
 

sunkacola

Moderator
Forum Supporter
Joined
Dec 2, 2016
Messages
2,309
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
Hi, and welcome (back) to the forum.
From your long post I gather one thing: you want suggestions on how to manage fibromyalgia effectively, and you want the community of others for support. You have come to the right place.

We are here to help in whatever way is best for you, and to support you.
And I want to add: good for you for wanting to take charge of this without drugs! So often people only want to know what drug works, and there's really no answer to that, not to mention there are so many other things one can do instead of (or at least, in addition to) drugs.

Acupuncture, Reiki, and other things have helped some people and not others. the main thing you need to remember is that no one can tell you what works for you - only you can find that out through experimentation. Even if a hundred people said something worked for them it doesn't mean it will work for you (although it might be worth your while to try it). We are happy to tell you what we are doing, but you need to do the experimentation for yourself.

For starters, read this post, and start trying anything there that you have not already done, or if you have not done it for a long time.
Ask any questions you may have.

 

cookiebaker

Senior member
Joined
Jul 26, 2022
Messages
481
Reason
DX FIBRO
Diagnosis
07/2022
Country
US
State
WI
Hi and Welcome! (or welcome back)

Sounds like you have been through the wringer in recent years.. Hope you are finally finding at least a little relief now..

Once upon a time, long time ago, in another life, I did a little bit of inventory work - I was a counter. Worked with a great crew. We did mostly gas station convenience stores, tho.. so it was only a couple of hours per location with 3-5 of us working at a time.
 

EzbG

Member
Joined
Sep 4, 2022
Messages
27
Reason
DX FIBRO
Diagnosis
08/1997
Country
US
State
CA
SO many people have done a bit of time being a counter. It really gives a different perspective on retail. I’ve been in the business since 1992. Managing teams, then the office (and teams) and now my own company. There’s a long crazy story there, too! (Another time, maybe)
 

EzbG

Member
Joined
Sep 4, 2022
Messages
27
Reason
DX FIBRO
Diagnosis
08/1997
Country
US
State
CA
Thank you for the welcomes!
 

sweetkamie20

Senior member
Joined
May 16, 2022
Messages
345
Hi all. I used to visit this site years ago, but didn’t post. But, after a recent reminder of the “whys” of what I was going through, I am back, but this time to ask for help. My story is kind of long. But I couldn’t really leave anything out.

I was diagnosed with Fibro in 1997, after being told for years by doctors that “you’re stressed out.” The doctor that diagnosed me, didn’t know I had researched and thought I knew what was the problem - and I simply described it as ‘feeling like you have the flu - the real flu that every fiber hurts - constantly.’ She asked a couple of logical questions, and then said, “have you ever heard of fibromyalgia?” We got it “under control” by concentrating on getting more sleep each night. Fast forward to 2001, and a slip & fall at work. I managed a team of inventory counters, and was walking along the checker area, and slipped and fell on drops of dish soap. 4 years later I had fusion surgery, which was deemed “a failure.” Nerves were damaged by the fusion hardware, and were continuing to have contact with the nerves. They removed the hardware. Pain levels were dramatically reduced - but… I got MRSA. 1.5 years later, they finally killed the MRSA, but left me with constant pain, 1/4 the feeling in my right hip/leg, and PTSD.
I still managed the Fibro okay, but oddly - I tended to forget I had it, because the back pain tended to overwhelm the Fibro pain, which is mostly controlled by opioids.
I still manage an inventory team, but its my own company. In January, I lost my 2nd in command to covid. That was the beginning of an incredible amount of stress. In my work, from Nov 15 to Feb 15 is very busy. My #2 used to manage teams, to give me time off. Now, it’s all on me. Silly me - I thought the building pain, lack of concentration, headaches, etc was signs of the extra workload. But when it didn’t recede by April, I just thought it was more damage to the disks that weren’t fused. Mid-year inventories were rough - and I was getting grouchy. The pain & exhaustion…. I was done. Told hubby I’m shutting down the company. At this same time, there were major changes going on at hubby’s work, and he was also tired, and getting grouchier every day. That was stacking on me. I was overwhelmed!
I had promised hubby in 2010 I wouldn’t commit suicide, but here I was - seriously thinking about it. I finally told him, about 5 weeks ago - “I am drowning, and I am not sure I have another surface in me.” It’s an odd analogy, but it was perfect. We spent time planning how to make things easier on me. AN answer came when he told his company of 36 years - “I am leaving.” Loooong story short - an investment company that owns his company, bought the (failing) competition. Instead of keeping them as competitors, they merged the 2 companies. Hubby‘s company was the better company - better software, better equipment, better methods, better service. But the other company had 5 times the people and so the powers the be decided they would go to the other companies equipment. Things were bad from the word go - the exact same 8 man team was capable of counting a major company grocery store in 6-8 hours pre-merge, was now taking 10-14 hours to do the same stores… that’s how slow the equipment was. After 11 months of that, he said “enough!”
HE is now my 2nd in command. He leads the team when I need rest. But I was still drowning. It’s not just the company - we bought a house 4 years ago, and it still isn’t together! Lots of projects still need doing. Some I can handle alone, but many need 2 people. He was always too tired to help. Every project needed doing, but so many straws, and this camel has a ”broken back.”
A family friend recently posted a meme on social media about Fibro, and comparing the pain of Fibro to other pain - kidney stones, appendicitis, heart attack, slipped disks, pain after surgery - and hubby saw it, and read it out loud to me. I walked to the kitchen where he was, stunned! It was the “smack in the forehead“ moment for me, then him. We realized! The constant fatigue, aches, pain so bad I got the cane out, because I couldn’t walk, the foggy head, the “word salad” - what I call the merging of 2 words, or switching the 2 word’s syllables. It’s the fibro… not the back getting worse.
We now have hope… and goals. Baby steps, to do & finish all the things that overwhelmed me. I now feel the life preserver around me. There will be a huge amount of teaching going on, as I am and always have been the “man“ of the house - I’m the mechanic, carpenter, maid, bookkeeper, business owner. He is the “tool hander.” I’m NOT belittling him - he was never taught, and I was self taught. I will guide, instruct, and hand tools, until I am better, then we can share.
I found this site a few years ago, and looked for it today. I’m looking to see what is “new” for fibro patients. I am NOT looking for medication recommendations, as I have gotten off more meds you can shake a stick at. I am looking to see what folks do to help - physically & mentally. What are you doing to get better sleep? Etc. Has any one tried accupuncture, acupressure, reiki, laser lights?
Thank you in advance for all suggestions!! Thank you for taking the time to read my “book.”
What a winding journey you’ve been on! It’s great that you guys found that meme ❤️

It’s weird reading your story cuz there’s some similar threads in mine. My husband and I have been in renovations for years, right before I discovered I had FM (or whatever it represents) the flare was so bad I told my husband I understand why people end their lives, my severest symptoms are generally flu-like.

I associate my FM with MRSA. My first flare was in the midst of being septic from MRSA when I was 25. From then on whenever I had flares I thought I was going into sepsis again…anyways, I find acupressure helps me a lot but not so much with the flu-like symptoms. For the flu-like symptoms I got a breakthrough with H1 antihistamine (has to be H1). That suggests I might be dealing with Mast Cell Activation Syndrome. (One brand of allergy med worked but the other didn’t.)

One of the things that seems to be helping a lot is homeopathics for the parasympathetic and adrenal glands…

I use lithium oretate to keep things relaxed. GABA supplement has some useful features but also some side effects I’m not fond of.

On a side note we’ve got a meme thread here to help deal with fibro. You can use the search function and look for A Touch of Humor. Welcome back ❤️
 

JayCS

Legendary member
Forum Supporter
Joined
Sep 5, 2020
Messages
1,944
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
For the flu-like symptoms I got a breakthrough with H1 antihistamine (has to be H1). That suggests I might be dealing with Mast Cell Activation Syndrome.
EzbG from all the (food) allergies you mentioned on the other thread, I'm wondering whether you might also want to look into MCAS, like me and sweetkamie?
I am NOT looking for medication recommendations, as I have gotten off more meds you can shake a stick at. I am looking to see what folks do to help - physically & mentally. What are you doing to get better sleep? Etc. Has any one tried acupuncture, acupressure, reiki, laser lights?
Like quite a few others here I don't take any meds after they only harmed me.

Sunkacola's advice post is a brilliant basic start.

If you have time for my big round up of ideas in depth (also 'a book' :cool:) you can find it here.

I've tried all 4 of the treatments you mention and self-applied acupressure and Chinese acupuncture (thicker needles) help me tons. Whilst Western acupuncture - not dry needling - harmed me greatly for days each of 10 sessions, several different docs. I don't think the other Reiki or laser lights did, but relaxing. But I actually try almost everything except meds, >100 treatments so far, still finding & trying more, and actually I could say I (need to) use 80+ treatments every day. Self-application of everything (except acupuncture of course) has become much more effective.

I use 50+ things (20+ treatments, 30+ trigger preventions) to get restorative sleep, despite still 4-8 sleep breaks a night.

I still haven't got round to sharing my compilation of treatments here, but you can get to them via my profile.
But I agree with sunkacola and like I say in my round up posts it'd be about deciding what your main symptoms are and working on these one by one, by sensing, describing, tracking, analyzing, trigger hunting & preventing, alleviating etc.
So if someone describes their symptoms clearly, I can compare them with mine, ask back, and make many route suggestions. Whilst at the same time when we describe our symptoms we get closer and closer ourselves to possible solutions. E.g.: Sleep is such a fundamental one to get under control: How exactly is your sleep, what are your insomnia triggers, how have you tried to prevent them? What have you tried: physically, mentally, supps? How good is your sleep hygiene? Where do you need to do things differently to others?

Another fundamental one which sunkacola rightly focuses on is pacing, which you (both) are obviously working on by changing the structures of your life, and there's probably quite a bit left to get to a point where you are no longer overdoing it, so your pain can calm thru rest....

Sorry to hear your struggle, but great how you're reaching back out to us!
 
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