So for a little background; I’m 27 and was diagnosed with fibro when I was 23, but have had the symptoms since I was a teenager. When I was first diagnosed, I was put on Lyrica. I liked it, but was only on it for a month so I really don’t know how well it worked (my insurance at the time wouldn’t let me stay on it unless I took physical therapy, which at the time, didn’t have money for). I was then put on gabapentin. I never noticed my flare ups being less painful or happening less often, but I stayed on it for about a year. I’ve now been off all fibromyalgia medicines for a little over 2 years (but do take klonopin to help my anxiety that triggers flare ups, and to help me sleep). I’m in a lot better place in life than I’ve ever been, so I think the lack of stress has helped with the amount of pain flare ups. My biggest problems with flare ups is intense back/shoulder/neck pain, migraines, depression, and fatigue. I feel like when I look for relief of fibromyalgia, I mostly get suggestions on ways to prevent flare ups, rather than how to help when the flare up happens. I take aleve for the pain, ibuprofen for the migraines, rest, hot baths with salt and various bath bombs, massages, heating pads, stretching, yoga…and I feel like nothing but time gets rid of the pain or migraines. So I have a few questions…
I have a new doctor who I’m seeing in a few weeks and going to speak with him about it all, but I want to hear from other fibro warriors what they have found to work the best to help with the pain when flare ups do happen.
Also, does anyone else have a problems with bras? I can very rarely wear a bra for more than a couple hours without it causing an intense flare up, any kind of bra…so I’ve basically been braless for almost 4 years now and have to find clothes to wear that are still appropriate without a bra and its very frustrating.
And lastly, I have a full-time office job. It’s pretty laid back, but of course every company wants their employees to have good attendance. How do you guys deal with employers and having to take more sick days than the average employee? And does anyone else feel extremely guilty and bad when they do have to call in for work? I hate coming off like a lazy employee who calls off all the time.
I rely on 'scripted Meds for Pain (hydrocodone), Migraines (hydroxyzine), & Sleep/Depression (amitriptyline). I was started on a new muscle relaxer & an anti nausea for the pain pill.
I use heat pads, cold gel packs, soft stretching (slightly lean forward), a hot shower with the nozzle on a strong pulsating stream, a brace, a TENS Unit (with electricity the sticky square electrodes zap my painful muscles. 2 zaps per second.) & a Chiropractor. If none of those work I get an urgent appt with my PCP, he either gives me 2 shots, One is for Pain & the other is a Steriod. Or a Pain shot & a Steroid Pack. I don’t work, so maybe someone will come here & share. Or you can peruse thru the other posts. Love, Light & Peace. Maggi.
First I want to commend you for everything you are doing to better yourself. I don’t think I’ve ever come across such a passionate person who is off medication and doing anything and everything they can to get better. We all try to do that but for a bunch of us, it doesn’t always get to happen.
Ironically I have been on Lyrica for a long time and I do like it. I take 25mg in the morning and 150mg in the evening. If I were to miss my evening dose just once I would fold up like a pretzel. I did do Physical Therapy or I like to call it “Physical Torture” lol but I also have pretty good insurance. I was put on Gabapentin before Lyrica but it didn’t work for me. I am also on Klonopin for sleep/anxiety. I try to limit taking it so I’m not getting dependent on it. I find if I’m taking it too much my anxiety will be everyday. I always keep some on hand with me during the day in case I’m having a more anxious day. My anxiety stems from having heart failure with an implantable defibrillator device and also a stress test which I coded from back in 1996. I have since had a transplant. BUT, for awhile I couldn’t even discuss what happened or type it without having major anxiety and PTSD.
My flare ups happen the same way. Are we twins? When I have stress, even if I’m not conscious of the stress, the neck/shoulder muscles tense up and go up the brain stem causing a headache which turns into a migraine. I am on narcotics and believe it or not it doesn’t help the migraines. The only way to get rid of it is to take a muscle relaxer or more of the klonopin to just pass out for a little bit which will help.
I unfortunately don’t wear bras, I think it would raise red flags 
I use to work as a manager for Walmart. I was a manager full time, i worked in the accounting office 2 days a week, and I was the store’s Community Relations Director. I think the most stressful thing was the Community Relations portion. It was just a add on job and I had to squeeze in the work for it. Many organizations want grants, or you have the non-profit organizations who would like a donation. I use to receive a ton of snail mail, a ton of phone calls, and a lot of people would come in to speak to me. What the last straw was, the main accounting girl I caught stealing. It was only $20.00 bucks but it was the manner of the stealing. We then found out she was stealing much more. The big boss wanted me to find out how much she stole and it was virtually impossible because she could have been stealing from registers and there was no way of knowing. One day I came into the office and my boss just wanted me working only on accounting…I was in there for 2 hours and all of a sudden (i was sitting down) I couldn’t move my hands, fingers, arms, legs, head, you name it I couldn’t move it. It was almost like I was underwater but with much more pressure and the pain was excruciating. I would go home and get immediately better and the next day go into work and the cycle would start all over. I was protecting under FMLA (Family Medical Leave Act) My job also had part time and full time disability which I enrolled in. I was alotted over 400+ hours for the year to be out and my job couldn’t fire me or right me up if I didn’t come in. I hated not coming in and I never abused it either. Unfortunately I got too bad, my FMLA had expired and my doctors stated they faxed in the new paperwork, Personnel never got it and they decided one day I had to either get the new paperwork that day, or I was terminated. My doctors were busy at the time and with the stress I was just like Im going to have to leave the job. My boss was cool and said I could come back who I still see to this day. I feel for you…I really do. Keep doing what you are doing. You are not lazy, feeling guilty is okay it just shows your a good egg. If your company understands whats going on and are supportive then your good. See what your company offers in order of protection just in case. The FMLA is a federal act and all companies have to abide by it. Good luck and keep us updated. Sorry for the book!
Take Care,
Davey
Hi, I’m also off medication and really struggle with what to do in a flare up. But I’ve realised that all I can do is rest during a flare and the more I rest, the quicker the flare goes away. I always tend to push through trying to stay at work but when I do take the sick day, my flare eases up. I do feel guilty but I’m starting to realise that people don’t really care that much about my sick days and my reason is very valid! I’m lucky to have a supportive workplace who understand that I have fibromyalgia so they don’t mind. I am also going to reduce my days to 4 days per week.
I also have problems with bras. They give me crazy neck pain. I found some comfy bras that are wire-free and fit me fairly loosely so they don’t put any pressure but still have padding. I can’t wear any tight clothing at all.
My biggest strategy during a flare-up is to ease any mental stress. I have to laugh, relax, watch funny light-hearted TV shows and cuddle with my puppies. I find that happiness and relaxation help a lot.
These are all great tips. I love the bra part!! lol!! So glad many of you feel the same. I decided to look up the ones that I am going to buy. Not sure if I should recommend a brand, but Soma sells some bralettes. They’re like a cross between a regular bra and a sports bra - but not constricting like the sports. Some are hookless also.
Make sure not to carry a purse/bags that are too heavy and try to alternate shoulders. All clothing should be comfortable, especially shoes. Anything that starts a pain reaction will spread it bodywide.
You definitely seem to be proactive - that’s the best thing. At least you got a diagnosis early on. I knew I had problems since I was young, but it took so many dif diagnosis b4 they finally said it wasn’t just one thing - but a perfect storm of fibro, excema, high BP. All of those things are exaberated by inflammation. It’s a lifetime of trying avoid that - no overdoing it, no stress, no crummy diet… that alone is overwhelming sometimes. I admire that you are trying to live medication-free. The docs will talk you into upping those meds until you’re a vegetable - don’t do it. Pain will find a way to rewire itself and meds are just a constant chase to stop it. If you do elect meds, try to keep them at the lowest possible dose. I like the tip at taking most of it at night. That’s what I have done. It’s taken a couple of years to get back down from 2400mg of Gabapentin to 300mg (100mg 3xs a day). Be careful of the clonazepam (Klonipin). It’s more addictive than all the others and going off that is really, really tough - a long titration is best. I tried to stop it cold not thinking I was taking much (1 to 2mg a day). I was wrong. If you do stop it, read the forums about the titration.
As for work - that’s a tough call. If possible be upfront with your supervisor(s) and tell them that you want to be the best employee possible, but that you do have a chronic medical issue. However, if you are in a work environment where that might be used against you, be careful. Disability does give you a safety net, but it’s not usually enough to live a quality life. You do have the ability to return to work and keep your status in the disability system in case you have to stop working again. Just something to keep in mind. At least educate yourself about the process before you might need it. It takes some time to go through the process.
I wanted to add something that isn’t usually talked about in Fibro forums - surgeries. Invasive medical procedures will set off massive pain reactions. Doctors who aren’t knowledgeable about Fibro - or like my orthopedic surgeon who didn’t “believe” in Fibro are dangerous to us. I had a complete spinal reconstruction with rods, screws, plates, cemented discs… a nightmare. I had a lot of pain b4, but I am still in a tremendous amount of pain. I would wish for anyone with Fibro to have that taken into consideration prior to doing ANYTHING invasive - no matter how minor that might seem to someone without Fibro.
I might try Lyrica again now that I have different insurance. I think I’m done using gabapentin, it just never did anything for me. And yeah my klonopin I only use when my anxiety is bad (usually at work, or in social settings), and when I have trouble sleeping. I developed a habit years ago on it, but now I know how to take it properly to avoid that.
But I think I want to see how muscle relaxers help before I get on any type of pain killers.
And with work, I haven’t gotten in trouble or anything, so I guess I’ll wait until someone says something to explain my situation.
Thank you so so much for the input, just knowing others have the same exact problems as me really helps