New member looking for comfort through the pain

General
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Hi everyone,

I am new to this website and I was diagnosed with fibromyalgia at the beginning of this year, although I have had symptoms for over 10 years. I’m 28 yrs old and I work full time but I have a special roster so that I don’t work more than 3 days in a row. I also have a special keyboard, mouse and desk setup at work to help alleviate pain. I trialled medication but it made me a sleepy zombie so I’m trying all other strategies under the sun so that I can reduce my symptoms. I am moving to a smaller apartment (less walking and cleaning), I have accepted that I will be wearing leggings and loose clothes for the rest of my life, and I work a 1pm-9pm shift so that I can sleep in whenever I need to.

Reading other people’s posts on here really comforted me because most people I talk to don’t understand what it is like and I find it hard to explain fibromyalgia…especially when I have fibro fog. Most people also think I look fine and I’m always happy and bubbly, so they don’t realise how much pain I am in on the inside. I am generally happy despite the suffering but it’s nice to share this with people who experience the same thing. Sometimes I break down, get angry at little things and can be nasty because I can’t handle another ounce of stress or pain in my life. But I’m also thankful that I now know what is going on in my body and have found validation in knowing what it is. I also have an excuse now for any social gathering that I don’t want to attend! :smile: and permission to stay at home in my PJS watching movies and cuddling my puppies all day.

I hope to learn more about how I can feel better (physically and emotionally) through everyone’s experiences. I’m wondering what everyone else’s experience has been when they first found out they had fibro and what are some ways to find comfort in the pain.

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Hi DeeGabby, I have had Fibromyalgia and Chronic Fatigue for a very long time now but when I first started really feeling bad I went to a chronic pain therapist and he suggested that I keep a pain diary. It’s really just for you to look at but sometimes it helps to write down what you’re feeling. I had to stop working and that was a very hard adjustment for me as I’m sure it is for everyone. I felt my self worth was wrapped up in the work i did. My therapist said it’s a grieving process for the loss of who you used to be. I too put on a smile and when people ask me how i’m doing I just say good or I’m fine. Because let’s be honest no one really wants to hear how you’re really feeling. It’s not that they don’t care it just everyone is dealing with their own stuff and they don’t really understand what’s it’s like to be in constant pain. That’s why support groups like this or support group in person if you can find one helps a lot. You are not in this alone and if you ever want to talk I’m here for you.

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Hello, @DeeGabby,
I’ve had it probably 20+ years, but my diagnosis is around 2 years old. I’ll apologize to anyone who has heard me say it before, but I see no reason to hide my good news under a bushel. And, while no one thing works for everyone, this has MADE MY LIFE WORTH LIVING AGAIN.

On March 1 of this year, I gave up gluten. By perhaps the end of 5 or 6 weeks or so, and not until then, I began to feel a lot better. Pain levels went way down. My fibro fog was lifting. I was even having terrible trouble communicating. (Lol I still forget words, like what my difficulty is called…) I did accidentally “gluten myself” a couple of months into it, and immediately was so ill (IBS, always a crowd pleaser with fibro sufferers) and it took a good week to improve again. There are actual legit medical reasons that gluten acts on you like that, but later for that.

Since March, I have slowly improved beyond that initial noticeable point. I still get some mild episodes of various aspects: muscle fatigue, IBS here and there, occasional sleepiness type fatigue. But the ache is gone. My sleep is improved while not perfect.

I didn’t pull the notion out of my hat; dietary connections seem to be one puzzle piece in the Syndrome. Some get additional relief from eliminating dairy, and nightshade vegetables. Eliminating gluten is both difficult from a craving standpoint, and it’s difficult to be vigilant about what goes in your mouth to the point of even avoiding incidental ingestion of some form of gluten. By no means does this work for everybody, but it does work for a number of us. After extended study, once it struck me why/how gluten could be making me sick like this, I dope-slapped myself and reasoned, well, WHY don’t you TRY? Not to overstate it, but it was like somebody sipping from a bottle of furniture polish over a period, and feeling so horrible, skin bad, hair falls out, stomach hurts, and finally reading the label: DO NOT TAKE INTERNALLY.

I feel kinda bad for carrying on about it, because isn’t there one in every crowd, but I’d be remiss if I didn’t say it!! That’s the very best way I can encourage you. I’m not “cured,” but I feel really well-managed.
Xxoo
Lynne

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Were you also diagnosed celiac?

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Thank you so much for sharing. I completely relate with the feelings of loss and needing to grieve. I cried for a little while after being diagnosed because I felt like it was a loss of my health and my old energetic self. That’s unfortunate that you had to stop work, it must have been so hard. I hope that it helped with managing your fibro and CF though.

That’s true that everyone has their own stuff to deal with. It is refreshing when I speak to people who understand chronic pain. I think I might try your suggestion of writing down what I’m feeling. I use an app to document my pain each day but it would probably feel therapeutic to write how I feel as well.

Thanks again and I am here if you need to chat too :slight_smile:

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Hi Lynne, thanks for sharing.

I’m glad you have found such great relief through eliminating gluten. I was actually diagnosed with fructose malabsorption years before finding out I had fibromyalgia. So this means I eat gluten free, dairy free and follow a low-fodmap diet. I notice that if I eat the wrong thing, my symptoms flare up a lot! I agree that dietary adjustments make a big difference. Although I still get bad pain and flare ups even following this strict diet. It’s just something that helps me to manage overall.

This year my physio also explained to me how people with fibro are always in a stress response or flight/fight mode. He said in this mode, energy gets turned away from digestion and goes more towards other functions of the body that are needed when we are in danger. For me this explained why I have had these digestive problems and intolerances.

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Oh, DeeGabby, I’m sorry to hear you have already adjusted your diet, and are still having issues. As an aside, I have developed gout in my big toe (apparently not uncommon in FMS sufferers) and have learned that fructose affects that and a fodmap diet helps also. Interesting that these food factors may affect us both, but apparently different ways.

Another protocol I’m considering is one involving Celebrex plus the antiviral famcyclovir. Let me find that website/explanation and I’ll post it at the bottom. I found it pretty convincing, and that the combination of the two is zipping along through stage III trials is encouraging. Though the combo is not on the market yet, the two drugs are already there and can be prescribed.
••••••
Here it is: http://innovativemedconcepts.com/index.html
••••••
Look for the video demo and click on it on the slides at the top of the home page. See if this makes sense. As it is, I use Celebrex for post-surgical pain and find it pretty effective overall. Let me know what you think.

Lynne

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Hi LMD, not certain if you’re addressing me re: celiac—in case you were, I’ll say I do not have celiac, per my gastroenterologist who did a biopsy during a scope procedure a number of years back.

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I am another fibromyalgia sufferer who feels better without gluten. It’s called something like non-celiac gluten intolerance. Lots of people don’t think it exists but like you, I can feel the difference. I am also taking Gabapentin, which is helping this time around. I’ve tried it before with no success, but maybe my dosage wasn’t enough. I take 100 mg 2 or 3 times per day. Also I had my vitamin D checked, and it was very low, so I am taking a Vitamin D supplement (over the counter). I can now squeeze my arm muscles and they don’t hurt.
Just try all the things people mention, and one may work for you.

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From what i can read, Lynne , some of the issues with gluten are not the gluten itself but they are finding Round up, a toxin , in many grains…ugh…

I have been having a tough time and recently found out that a medication i was on had toxin in it…geez our food and meds need to be safe…

Weather is a big factor for me and we are very wet and rainy this year…

Maybe all of us should try at least a short term food diary to see what foods may be making us worse…i crave salty things…i know i feel worse if i over indulge…

Lj

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DeeGabby ,

Its a tough disease for sure…there is a lot of trial and error in whats helps each of us…

I have had it quite a while with even memories of it as a child, a genetic form…

My fibro toolbox is quite deep, with supplements , and home treatment devices…

Heat helps, topical pain relievers help me a good amount…i love my acupressure mat, which helps relax me and usually helps me sleep deeper.

Lj

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Hello!
I am also a recently diagnosed person with Fibromyalgia (diagnosed last December 2017). I also experience flare ups when eating or overindulging on some foods such as bread, salty foods and anything with chicken or egg so, I try to avoid these foods. I can’t handle changes in pressure and temperature as well and whenever I lack sleep I also experience flare ups. Having a food+water, sleep and/or activity diary helped me monitor my flare ups and symptoms. They give me information on what foods, things or activities to avoid or regulate. I also tried having a trial and error with medications. I was in Pregabalin before but it made me so dizzy so i switched to Duloxetine and it helps with the pain. I also tried using alternative ways to alleviate the pain such as using a hot compress, having a massage, using TENS and having a walk at least 20 minutes a day. Although, the hot compress and massage worked for me better. I also discovered that swimming works for me. I also adjusted my schedule at school and work (I study/work in the medical field) and tried to learn relaxation techniques.

It was also difficult to grieve about my old self and to adjust with new routines but like most of you, I am also fighting and trying my best to live life to the fullest. Hearing from you all and reading your messages encourage me to not give up and to try different ways in adjusting with this new condition (along with my other autoimmune diseases). I am glad to find a support group (even just online for there is no such support group available in our country yet) who understands what I am going through. I am really thankful. I hope my experiences help and/or encourage you all! Let’s do fight this battle together! We can overcome this just keep on fighting!!!

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Hi Rese, your experience sounds very similar to mine. I am also trying to learn ways to relax and really enjoy my life even though I am so limited. I find that I am learning to enjoy the simple things in life and slowing down actually feels really nice. It’s mainly getting through work that is the hard part.

Thank you for your encouragement :slight_smile: