I am just chiming in to say I am so sorry you are going through this at such a young age. It is a lot and I am sure some days are overwhelming. It is great to hear you have a primary care doctor who listens. Wishing you better days ahead as the benefits of your treatment kick in.
Cheryl
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I’ve had fibro/chronic myofascial pain syndrome since probably 30 paired with chronic injuries (ankle/spine). I’ve been on Cymbalta, a low dose for 3 years. It’s been great. I’m not as nuts and it calms the gazillion trigger points I’ve got. I have noticed that I don’t wake up as quickly in the morning since I’ve been on it. That is kind of a problem with an 0630 commute. I often end up sleeping in on Thursday mornings - by then I’m just not worth a dam if I don’t.
I don’t ride any longer, but that’s not due to the fibro, it’s because my ankle is trashed. I drive instead. I probably could ride now, but I have no desire. I can drive the hell out of a horse. If I rode, I’d be putzing around and I don’t want to do that.
I’ve done PT (dry needling mostly) for years. My old PT is now just doing management, but he was great, got me through a lot. Basically he’s a great enabler. I do something stupid & he put me back together. I’ve added a local massage joint to my team.
You do what you gotta do. Last week I was stripping wallpaper off my mother’s 20’ stairs. I followed that with 3 days of driving. I wasn’t moving too great. I’ll get over it. I am better about admitting what I can’t do than I was 15 years go.
The last time I considered driving into an overpass was when I in the Navy, working in the shipyard. That wasn’t really about killing myself, more of “If I drive into that concrete wall, I won’t have to go to work today.” Most in my department had that thought at least once.
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Hi there! I have had fibromyalgia and chronic fatigue for almost 10 years.
I definitely agree with finding a doctor who believes in what you’re going through and doesn’t discard the chronic pain that you’re dealing with.
Personally, a little bit about my story is I was living in a suburb of Philadelphia and I had this pain and fatigue that wasn’t going away. It was actually my asthma doctor who suggested to me that perhaps I had fibromyalgia. I decided to go to New York City to the Hospital for Special Surgery, which is known as one of the best hospitals in the country for rheumatology. I met with a very kind and experienced rheumatologist who listened to what I was going through. He asked me a lot of questions about my history, including any traumatic incidents, medical history, reviewed labs, and after a lot of thorough discussion, and a physical exam remarked that I had fibromyalgia. He decided to start me on a medication, known as Savella, which is similar to Cymbalta, and similar to Lyrica- a SSNRI. The Savella tremendously reduced my pain however, I felt very hyper on it and very anxious. I also have bipolar so I have a tendency to swing up towards mania and we eventually decided to stop it. What we did decide to try instead are Celebrex, which is an NSAID and also Zanaflex, similar to Flexeril, which is a muscle relaxant. I am still on the NSAID and muscle relaxant to this day, they help me. I do think that I had more pain relief from Savella, however, I couldn’t tolerate the side effects.
At one point, I saw another doctor because he was closer to me in location and we tried pretty much everything that we could that was off label other than the typical prescribed medication’s.
At one point, I took Magnesium which helped the pain, but I have trouble tolerating the digestive side effects. I also tried PT multiple times in addition to chiropractic and massage and a couple other things. I do think that my pain was lessened when I lost weight.
I did eventually go back to the doctor who originally diagnosed me, and I still see him from time to time. I think what I have learned more than anything else is it you have to figure out what works for you and what works for you may be different than what works for somebody else.
Personally, I have found that by having my horse I don’t focus so much on my chronic pain because I’m so focused on her, she has severe knee arthritis. I find that not focusing on my pain as much has helped me to put it in perspective.
I do often get tired when I come home from the barn. Sometimes I take a nap or just need to rest.
I definitely suggest finding a doctor who works well with you. I was actually listening to a very interesting interview last night on the mind-body approach to pain. I think there’s a lot to be said for that because I think that sometimes stress can exacerbate pain.
Wishing you all the best!
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These quotes ring SO true to me.
I was diagnosed via my primary care + rheum with Ehlers Danlos Syndrome in 2015 which is a connective tissue disorder. I also had a positive ANA and these days I suspect I may also have lupus; I have a large swath of symptoms but it can be tricky with these diseases because so many overlap and there isn’t actually that much known about them.
Along with the EDS, I have and have had as far back as I can remember, chronic fatigue syndrome. They go hand in hand. @Jaegermonster hits it on the head with pacing yourself. My SO has compared me to a shark as well, I need to keep moving along or I will go belly up (aka not get up off the couch or bed). Finding balance is really tricky.
I do EVERYTHING in my power to minimize my symptoms. I went primarily whole foods plant based back in 2008 which seemed to help, I started cutting out stressors as best I could…work stress and personal life stress where at an all time high when my body broke down when I got diagnosed, I stay physically active but these days it’s much less intense than it used to be since my body will go from 0 to 100 and be inflamed for a week now if I push much harder than what Im used to. I have to go snail slow when amping up anything like that.
Since covid reared its head, I feel things have changed for me as well. I got pretty sick in Jan 2020; horrid cough, hacking up lots of yuck and that took a few weeks to run its course. I thought it was from arena dust initially, but looking back its possible it could have been covid. I work for a large global corporation and there was lots of travel happening at that time. I’ll never know. The stress of everything related to that plus MUCH in the way of work stress that kicked up in 2021 and is just starting to settle now could also be contributing. I don’t know. More fatigue, more pain/discomfort, more brain fog, worse memory etc. I recently saw my primary and a neurologist over it.
With remote work becoming the norm with covid, I have been able to continue working remotely full time through an ADA accommodation due to my health conditions, so that helps with stress, energy drain and all that. Not having to get ready “for the office” and being able to sleep in closer to work time are huge, being able to take a nap at lunch is huge, and being able to make my food during the day is also huge. As well as avoiding sick people be it covid or not. I have torn connective tissue between my ribs coughing in the past and that was the most pain I can recall being in. Not having to be in the car which makes me tired is also huge. I had to hold my ground a bit on that, but it seems like it should continue to be ok.
I also have started being 100% meticulous about eating for nutrient content. I started that a couple weeks ago and have noticed that Im not quite as tired as I have been during the day. I use chronometer to track everything and did notice I was missing a couple things that you don’t typically hear about (or I didn’t) like choline. Being plant based…Ive not gotten much of THAT in ages and deficiencies manifest as low energy, fatigue, memory loss, cognitive decline, muscle pain. All things that have been getting worse. I started drinking those KaChava meal shakes which pack a lot of punch nutritionally and do supplement Vit D, B-complex, Choline, and iron to make up the difference from what I eat. I split the B-Complex in half and do a half an Iron if I dont hit it through food. I also don’t drink any alcohol and have to keep any caffeine very low as I am on beta blockers for a high heart rate due to the EDS.
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