Six months in after diagnosis - have questions

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Con

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Hello to all. I was diagnosed in September 2021 with fibromyalgia. I definitely had to be my own advocate and switched general practitioners. I was referred to a rheumatologist doctor who diagnosed me, however, does not treat. Since that time, I only feel like I have had a handful of good days. I am on duloxetine, gabapentin (which doesn’t make me tired) turmeric , iron, and vitamin D as well as thyroid medicine. I am mostly plant based since January 2020. I have tried melatonin and trazadone for sleeping. For a couple days it works and then stops. My watch says I get only three to four hours of deep sleep. I am in bed by 9 pm and up at 5:30 am. I feel some of the brain fog returning and usually only have enough energy for work, thankfully from home. However, we will be starting back a couple days per week. I walk a mile daily - which isn’t like before and do daily stretching. I use the computer a lot for work so my hands ache. Hands, wrists, up the arm. My hips ache or the crease of my ankles. I have headaches. I use ice, heating pad, meet with a massage therapist for myofascial stretching. My feet or hands may feel swollen. I sometimes have sit bone pain. Once in awhile I will have a slight tremor on right cheek when I smile. I have no patience for people which I’m sure is not sleeping well. And please do not make me make a decision after working. It has taken me a few days just to return to this page after signing up. Will I stop having symptoms for a period of time? What may I try to sleep better? I think I saw another thread that discussed how to explain this to loved ones. I am very thankful for my daughter who has been my rock through all this. I keep a log for about a week to two and then I do not. No idea why I don’t continue. How do you balance work and fibro? Thank you for having this forum. The dr office did find this website for me. They just are not familiar with how to handle chronic pain.
 

JayCS

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Hi there, Con, and welcome! Maybe you'll be back some time... 😏 😁
It has taken me a few days just to return to this page after signing up. Will I stop having symptoms for a period of time? ... I keep a log for about a week to two and then I do not. No idea why I don’t continue. How do you balance work and fibro? ... The dr office did find this website for me.
Praps my post on self-motivating answers your praps unasked questions how to not take a few days to return to this site or stop your log.
Will your symptoms stop for a time? Nope, highly unlikely. They'll lessen and increase. Some people claim they are healed, but I'm pretty sure they had a mild form of FM or none at all (misdiagnosed), seeing as all of the symptoms may be something else.
Balancing work and fibro: I don't need much money so I'm able to put self-care first, if necessary I could retire and do voluntary work. I aimed at and managed to get all the various kinds of disability that were worth the while. I could do quite a bit of home office, but my job doesn't allow for much. What I can I do voluntarily now, altho on midterm sick leave due to jab sfx. That can be 5-15h/w, depending on me. But if I did too much, I'd crash for a longer time. I had a period a year ago where I was doing 20-30h/w home office, but crashed mid-term. So I know: Me first and only then anything else. Since I don't tolerate most meds, suppressing symptoms doesn't work at all. Almost half of the money I get due to not retiring I'm paying for supps. Which I think is a good deal.
Your dr office has a sure hand & good taste: This is one of the best places if not the best atm for coping with fibro, and I'm "everywhere". :cool:
 

Jemima

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Hello to all. I was diagnosed in September 2021 with fibromyalgia. I definitely had to be my own advocate and switched general practitioners. I was referred to a rheumatologist doctor who diagnosed me, however, does not treat. Since that time, I only feel like I have had a handful of good days. I am on duloxetine, gabapentin (which doesn’t make me tired) turmeric , iron, and vitamin D as well as thyroid medicine. I am mostly plant based since January 2020. I have tried melatonin and trazadone for sleeping. For a couple days it works and then stops. My watch says I get only three to four hours of deep sleep. I am in bed by 9 pm and up at 5:30 am. I feel some of the brain fog returning and usually only have enough energy for work, thankfully from home. However, we will be starting back a couple days per week. I walk a mile daily - which isn’t like before and do daily stretching. I use the computer a lot for work so my hands ache. Hands, wrists, up the arm. My hips ache or the crease of my ankles. I have headaches. I use ice, heating pad, meet with a massage therapist for myofascial stretching. My feet or hands may feel swollen. I sometimes have sit bone pain. Once in awhile I will have a slight tremor on right cheek when I smile. I have no patience for people which I’m sure is not sleeping well. And please do not make me make a decision after working. It has taken me a few days just to return to this page after signing up. Will I stop having symptoms for a period of time? What may I try to sleep better? I think I saw another thread that discussed how to explain this to loved ones. I am very thankful for my daughter who has been my rock through all this. I keep a log for about a week to two and then I do not. No idea why I don’t continue. How do you balance work and fibro? Thank you for having this forum. The dr office did find this website for me. They just are not familiar with how to handle chronic pain.
Hi Con,

Welcome here!

It sounds like you're already doing some great things for yourself, such as exercising every day and sticking to a regular sleep routine. The good news is that there are still more things that you can incorporate into your lifestyle to improve fibromyalgia, and over time you're going to figure out how to get a handle on this.

JayCS is right, I'm afraid, that generally people with fibromyalgia don't ever have periods with no symptoms at all. We can experience better and worse periods, and this will usually come down to how well we are managing our symptoms, and whether there are triggers/stressors in our life that we either can't pinpoint or are simply out of our control.

When you say that your medication only works for a few days and then stops, and that you're only getting a handful of good days overall, it occurs to me that there's a good chance you're being regularly re-triggered. I'll explain what I mean by that!

A huge part of managing fibro is figuring out how to know and manage our triggers. So often - particularly early in the fibro journey - when we wake up feeling better, we fall back into going about our day as we would before fibromyalgia fully manifested. On these days, our body or mind may not give us any signals that what we're doing is too much, but the next day - or possibly even several days later - we will crash, and our symptoms will become more extreme. What constitutes as "too much" can be simple things like doing too much yard or housework, or throwing ourselves into activities we love because we feel like we can. It will take time to intuit where your limits are (and it may be comforting to know that to some extent they can be expanded very carefully and gradually!), but to begin with, it's worth getting very familiar with the idea of pacing, commonly known as "spoon theory". That means budgeting your energy each day, and - perhaps most importantly - being very mindful to go slow and take breaks even on days when you don't feel like it's necessary. Sometimes, we might decide that doing too much and living with the consequences is worth it, but it helps to know how that's going to play out!

Among other triggers lies stress in its many forms. This can be the classic stressors like money worries or having too much to get done, but it can also be things like reading too much of the news, giving a lot of emotional support to others, or even letting resentment linger when family members or colleagues aren't being considerate! Other factors might include eating poorly or getting dehydrated, which will stress the body; being exposed to chemicals when out and about or cleaning the house; exposure to dust or mold; too much evening screen time - I'm afraid the list goes on!

You said that you were keeping a log on and off, and I struggle with sticking to that too. The tactic that helped me was deciding that I would focus on one thing at a time, and only track it for a week. So, to give an example, for an emotional trigger tracking week, I recorded the things that made me feel good or bad each day, and how my pain and fog went up and down. That helped me start to see patterns, and eventually I could spot them without writing it down. Maybe you'll find that easier!

I'll also add that experiencing chronic pain itself can be immensely stressful, but luckily this is something we can learn to mitigate. It's a normal response to feel afraid when we feel pain. We want to move away from the threat, or take our hand off the stove - metaphorically speaking - but we can't! A therapist helped me learn to interrupt that stress response. I wrote this for someone else:
To regain control of the situation, I worked with an amazing psychologist who introduced me to the idea of radical acceptance. I had to work very hard to embrace the idea that fibromyalgia isn't a threat to me - it feels bad, but the pain isn't a threat. He got me to do body scan exercises (you can Google this!) every day, while telling myself that what I was feeling was just a presence, and I could let it come and go with total acceptance, because it wouldn't do me any harm. This felt really counter-intuitive to begin with because I was afraid of acknowledging the sensations, but once I got comfortable doing it, low and behold the pain and other symptoms started to lessen!

I hugely relate to you on the computer use-related pain. I also work from home, and whenever my symptoms flare, my fingers, arms, and particularly shoulders like to scream at me! Generally, I find that when my symptoms overall are in check, these specific pains calm down too. I also feel mentally flattened after working, but I'm lucky that I can manage my schedule and create more and less intense days for myself, so I can recharge the batteries a little. For me, this also comes down to how well I'm managing things overall. I sincerely hope that you're going to find the tactics to make working feel easier!

You mentioned that you often feel as if your hands and feet are swollen. I also had this alongside what I can only describe as a general feeling of puffiness and inflammation. I found that taking a supplement called Boswellia got rid of this completely - in fact, when I ran out a couple of times these symptoms returned within a couple of days, so the supplement is a permanent part of my routine now. Obviously, we're all different, so I can't guarantee you'd have the same success, but it could be worth a try!

As far as sleep goes, there are a number of supplements that you might find useful. JayCS has had success with passiflora and GABA (I'd check for interactions with your gabapentin there - @JayCS can you advise?) Some people find a melatonin supplement handy. I found Magnesium Glycinate hugely improved my sleep, although I still rarely sleep solidly through the night. Frustratingly, we all seem to respond to different things! I know that irritability feeling so well, and I'm sorry you're struggling with that. It feels horrible, but try to remember that it's 100% not your fault, and let your loved ones know why you're cranky! Do explore different ways to manage stress, as being in a more soothed state overall will inevitably help your sleep.

If you haven't already checked it out, Sunkacola's pinned post here is a great place to get an overview of the lifestyle factors that should help you manage your symptoms. There is so much information here in the forum, including lots of other supplements addressing different fibro symptoms, treatments, medication experiences, and so on. Hopefully, you'll find the right signposts to figure out what works best for you. In the meantime, we're all here to answer any questions you might have, or commiserate when you just need a good vent! It's great that you have your daughter there supporting you. Good luck with everything 🌻
 

JayCS

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JayCS has had success with passiflora and GABA (I'd check for interactions with your gabapentin there - @JayCS can you advise?)
Hmm - I don't think I'd take them together.
As the name suggests gabapentin and pregabalin are GABA-analogues/-derivates, but work completely differently and don't increase GABA.
So that's not the problem, it's more that gabapentin is a sledgehammer, GABA needs finesse to balance out (incl. with other amino acids).
GABA may be an alternative for those who want to get a feeling for their body with less side effects.
BTW I've halved my passiflora due to a H1-antihistamine in my first sleep break. 2nd generation so it doesn't make me drowsy in the daytime.
 

Jemima

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Hmm - I don't think I'd take them together.
As the name suggests gabapentin and pregabalin are GABA-analogues/-derivates, but work completely differently and don't increase GABA.
So that's not the problem, it's more that gabapentin is a sledgehammer, GABA needs finesse to balance out (incl. with other amino acids).
GABA may be an alternative for those who want to get a feeling for their body with less side effects.
BTW I've halved my passiflora due to a H1-antihistamine in my first sleep break. 2nd generation so it doesn't make me drowsy in the daytime.
I knew you'd be in the know :)

Another good spot with the passiflora. Any improvement overall? I'm thinking of you a lot.
 

Con

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I wanted to type a quick thank you Jemima for answering so many of my questions/concerns. And the time you took in doing so. I want to reread with a clearer head. And please know I am very appreciative. And a thank you to JayCS. I look forward to re-reading your posts.
 

Fibrosloth0803

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Hi all…..I was finally diagnosed 10 years ago after 5 years of trying. For me, I need to take gaba and lyrica both to help with my pain along with monitoring my triggers and ensuring good rest. I think the best advice is to lean on your instincts. If your body is tired, let it rest - do not feel guilty; I repeat do not feel guilty for it. With Fibro you have to be your own advocate in every way as your body/experience is complete different than anyone else’s and doctors are still learning. If your doctor isn’t listening move on to the next. You cannot be an advocate for yourself if you don’t believe you deserve it. Listen to your body and give it what it needs. With medication it takes several weeks for the side effects to go away but it is worth it if you give it time. I still have horrible days and days where I am in bed ALL day. My husband and kids have learned over time that this is just what it is sometimes. My external family/friends (parents, sibs, etc.) make jokes because I never answer my phone or I cancel plans etc…..no matter how many times I explain it, they just don’t get it….sometimes I just can’t do it, it’s not in me. Hang in there, there are many of us, we all may feel it differently but we struggle with the same issues a lot.
 

Jemima

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I think the best advice is to lean on your instincts. If your body is tired, let it rest - do not feel guilty; I repeat do not feel guilty for it. With Fibro you have to be your own advocate in every way as your body/experience is complete different than anyone else’s and doctors are still learning. If your doctor isn’t listening move on to the next. You cannot be an advocate for yourself if you don’t believe you deserve it. Listen to your body and give it what it needs.
✨ That is all fantastic advice!
 

Jemima

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Thank ye kindly! 🤗 - Good question. Not easy.
I'll take the rest over to the vaccine-thread....
And you?: I hope you're up up up now... :cool:
I hopped over there with you!

Thanks for the ask - I'm doing generally OK, but having real trouble with my arms for some reason 🤷‍♀️ This too shall pass!
 

Con

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Your advice really hit home with me. I took a day after you shared to watch nature and read and think about what I have been through. I realized that I probably was at the highest or lowest point of fibro when finally diagnosed. I was unable to drive and taking naps to get rid of some discomfort. Sine then I have continued pushing through not really comprehending all the changes I need to make. I have always been a strong woman and felt weak. I now know I am not alone in this fibro journey and will work on me.
 
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