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an honest puck

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Hello! I've been diagnosed with fibromyalgia for less than a year. Because I was in grad school, I didn't have the space to really try and get better.... until I got too run down to continue school. So now I'm on a break, and I'm a bit lost. I have a great rheumatologist, but I lost my insurance when I stopped being a student employee, so I'm not seeing any doctors until I get my insurance sorted (should be less than a month of waiting!). I'm on my own for now, so I'm looking for some basic advice.

My symptoms/co-conditions, in no particular order:
  • persistent nausea (daily since about November 2020)
  • achy joints (especially hands, elbows, knees, hips, ankles)
  • frequent headaches that often progress to migraines
  • all over deep muscle aches
  • arthritis in my hands
  • allodynia (skin sensitivity / painful skin)
  • POTS
  • intolerance of exercise, though there's usually a 2-3 day delay for the worst pain and fatigue
  • fatigue
  • difficulty falling and staying asleep
  • digestive problems
  • .... probably more stuff I'm forgetting
What I have tried that doesn't work for me:
  • ibuprofen
  • acetominephan
  • naproxen
  • duloxetine
  • gabapentin (too sleepy)
  • I can't stick to an intensive anti-inflammatory protocol diet
  • yoga
  • meditation
  • hot baths with epsom salt
  • pushing through the pain
What I'm currently doing:
  • Medicine
    • diclofenac gel ("voltaren") on my hands (supposed to be 3x a day but I don't do it that often)
    • tizanidine (muscle relaxant for sleeping)
    • trazodone (for sleeping)
    • nabumetone (NSAID meant for the arthritis. No idea if it's helping or not)
    • medical cannabis (sparingly)
    • vitamins (multivitamin, plus additional D3)
  • Lifestyle
    • compression gloves at night
    • gluten-free
    • dairy-free
    • stay warm

If I am good about taking my nighttime medicine, I'll get 6-7 hours of sleep. If I don't, it's more like 4-5. While cutting out gluten and dairy has helped a lot with the digestion issues and helped some with the joint pain (I really feel like garbage when I cheat), I'm still not functioning well. I have led a very sedentary lifestyle for years, but it's getting ridiculous. I shouldn't have to hang out in bed all day in my late 20s...

Any advice is appreciated; I really don't know where to go from here, and as I said earlier, it's going to take a minute before I can see my doctors again.
 

JayCS

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Hi puck, and welcome in!
Hello! I've been diagnosed with fibromyalgia for less than a year. Because I was in grad school, I didn't have the space to really try and get better.... until I got too run down to continue school.
Ah, the old story of going on, not heeding warning signs, most of us know that all too well... :)
All the more important to learn from that, learn our body, learn our warning signs - a different "school", if we want... :cool: 😏
So now I'm on a break, and I'm a bit lost. I have a great rheumatologist, but I lost my insurance when I stopped being a student employee, so I'm not seeing any doctors until I get my insurance sorted (should be less than a month of waiting!). I'm on my own for now, so I'm looking for some basic advice.
On your own, especially with us in your company, is not the worst thing to be. Docs can only go so far, and it's good to have time to sort things for yourself and then ask them. Our very helpful "basic advice" post is: here. Now for the "any advice" part:
My symptoms/co-conditions, in no particular order:
It's always paid me off to prioritize. If I were to prioritize your list as my own, I'd put sleep and headaches up front...
Then (parallel to praps grieving & radical acceptance): symptom analysis with trigger hunting, preventing and alleviating:
persistent nausea (daily since about November 2020)
Tough - many reasons possible. Any triggers identified? (e.g. movement). If you're open to homeopathy: nux vomica D12....
  • achy joints (especially hands, elbows, knees, hips, ankles)
Is it really the joints themselves (more arthritis) or the tendon ends above and below (more fibro)? Stretching (gentle, short)?
  • frequent headaches that often progress to migraines
Again (always...): Any triggers identified? (e.g. wrong food, drink, breaks, work, air, sleep, oversensitivities...)
  • all over deep muscle aches
Tried B12? Dosing your D3(+K2) higher? Slowing down, keeping to the sweet spots? Fearless?: 10-30 second cold shower?
  • arthritis in my hands
Tried hand exercises on youtube?
  • allodynia (skin sensitivity / painful skin)
Triggers?: Tried changing textiles, detergents, soaps etc.? TENS unit?
Ah, that reminds me there's a test for it I want to try out. Youtube videos, but starting with the tiniest baby steps...
  • intolerance of exercise, though there's usually a 2-3 day delay for the worst pain and fatigue
Again (see advice post): Try starting with much less, but more often, e.g. increasing from 5'/h. More stretches than workouts.
Ah, my toughest. I need to replace meds with supps. Tried carnitine, Mg, CoQ10, ALA (NAC, PQQ, Ribose, SAM-e, luteolin)?
  • difficulty falling and staying asleep
Tough one. How's your sleep hygiene? Tried analyzing triggers? My supps now: 1.2g passiflora, GABA/glutamine, rhodiola.
  • digestive problems
Stomach: hypo- or hyperacidity? IBSD or/and IBSD? Further food triggers aside from your gluten & dairy?
  • .... probably more stuff I'm forgetting
More later?
What I have tried that doesn't work for me:
  • ibuprofen
  • acetominephan
  • naproxen
  • duloxetine
  • gabapentin (too sleepy)
Lots of meds and supps zombified me.
  • I can't stick to an intensive anti-inflammatory protocol diet
All anti-inflammatory spices trigger my hyperacidity: GERD/reflux/heartburn & stomach burn.
Many types to try, right up to Yoga Nidra: guided body scan for sleep & more. Short stints, starting with 3-5' & active forms.
  • meditation
Alternatives: mindfulness, progressive muscle relaxation, autogenics, body scan, Yoga Nidra and more.
  • hot baths with epsom salt
Can't tolerate that. Epsom salts: magnesium has no evidence to work over the skin, so I think it's a good placebo for some.
  • pushing through the pain
Those that say they can may have a rare form or no fibro. See advice post.
What I'm currently doing:
  • Medicine
    • diclofenac gel ("voltaren") on my hands (supposed to be 3x a day but I don't do it that often)
    • tizanidine (muscle relaxant for sleeping)
    • trazodone (for sleeping)
    • nabumetone (NSAID meant for the arthritis. No idea if it's helping or not)
    • medical cannabis (sparingly)
    • vitamins (multivitamin, plus additional D3)
Are you comfortable with meds, and side effects OK for you or are you interested in transitioning to more supps?
I wouldn't take any meds and hardly any supps for longer if I weren't sure they're helping...
Some have great success with MMJ, I doubt I want to try, altho I'd had it applied for.
I prefer single supps with absolutely no additives to aimless multivitamin combos, to calculate the doses & effects more precisely.
  • Lifestyle
    • compression gloves at night
    • gluten-free
    • dairy-free
    • stay warm
If I am good about taking my nighttime medicine, I'll get 6-7 hours of sleep. If I don't, it's more like 4-5. While cutting out gluten and dairy has helped a lot with the digestion issues and helped some with the joint pain (I really feel like garbage when I cheat), I'm still not functioning well. I have led a very sedentary lifestyle for years, but it's getting ridiculous. I shouldn't have to hang out in bed all day in my late 20s...
Compression gloves sounds good, if they are helping and not harming. Gluten & dairy sounds good enough if you are otherwise eating healthy: No processed foods, no simple carbs, no saturated fats. The other two "big" diets to try are vegan & Mediterranean, that'd include almost everything else except e.g. histamine (which I have to now watch for) and lectins.
Sedentary: Loads of stretches and other exercises we can do "sitting", whilst doing other things, for a start.
What motivators do you need to get up & move? Maybe tokens? 😏 Competition? 🏆. Alarms? ⏰ Start from baby steps? 🐥
Cold therapy may sound unbelievable and contrary to our need for warmth, but it can reduce and inflammation in fibro.
I initially had lots of success with cryotherapy and now definitely need a need a 30-60 sec. cold shower at least before bed, and at least one hot water bottle per night and one per day, 5 pairs of socks (Raynaud), in the cold I keep to the sweet spots.
Any advice is appreciated; I really don't know where to go from here, and as I said earlier, it's going to take a minute before I can see my doctors again.
You're already doing a lot of good stuff, but getting headaches down and exercise up seem to be priority?

Things you haven't mentioned are for instance..
  • good gentle "body-listener" physiotherapists (osteopathy, acupressure, acupuncture, chiropractic, and many more types etc.), careful with the normal ones, even if they think they know how fibro works.
  • good "pain-experienced" psychotherapists, e.g. CBT or ACT, mine does Gestalt therapy.
Some time the question will arise when and in what form you can continue grad school, but I'd say there's so much more to try!
 
Last edited:

Jemima

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Hello! I've been diagnosed with fibromyalgia for less than a year. Because I was in grad school, I didn't have the space to really try and get better.... until I got too run down to continue school. So now I'm on a break, and I'm a bit lost. I have a great rheumatologist, but I lost my insurance when I stopped being a student employee, so I'm not seeing any doctors until I get my insurance sorted (should be less than a month of waiting!). I'm on my own for now, so I'm looking for some basic advice.

My symptoms/co-conditions, in no particular order:
  • persistent nausea (daily since about November 2020)
  • achy joints (especially hands, elbows, knees, hips, ankles)
  • frequent headaches that often progress to migraines
  • all over deep muscle aches
  • arthritis in my hands
  • allodynia (skin sensitivity / painful skin)
  • POTS
  • intolerance of exercise, though there's usually a 2-3 day delay for the worst pain and fatigue
  • fatigue
  • difficulty falling and staying asleep
  • digestive problems
  • .... probably more stuff I'm forgetting
What I have tried that doesn't work for me:
  • ibuprofen
  • acetominephan
  • naproxen
  • duloxetine
  • gabapentin (too sleepy)
  • I can't stick to an intensive anti-inflammatory protocol diet
  • yoga
  • meditation
  • hot baths with epsom salt
  • pushing through the pain
What I'm currently doing:
  • Medicine
    • diclofenac gel ("voltaren") on my hands (supposed to be 3x a day but I don't do it that often)
    • tizanidine (muscle relaxant for sleeping)
    • trazodone (for sleeping)
    • nabumetone (NSAID meant for the arthritis. No idea if it's helping or not)
    • medical cannabis (sparingly)
    • vitamins (multivitamin, plus additional D3)
  • Lifestyle
    • compression gloves at night
    • gluten-free
    • dairy-free
    • stay warm

If I am good about taking my nighttime medicine, I'll get 6-7 hours of sleep. If I don't, it's more like 4-5. While cutting out gluten and dairy has helped a lot with the digestion issues and helped some with the joint pain (I really feel like garbage when I cheat), I'm still not functioning well. I have led a very sedentary lifestyle for years, but it's getting ridiculous. I shouldn't have to hang out in bed all day in my late 20s...

Any advice is appreciated; I really don't know where to go from here, and as I said earlier, it's going to take a minute before I can see my doctors again.
Hi Puck,

Welcome to the forum - I hope you find a good amount of useful information here! It's a great place to find support and camaraderie on this strange fibro journey. Glad to have you with us. I'm so sorry you're going through all of this at such a young age - truly not fair.

I'll second the wise words of JayCS above, that not having access to a doctor for a while isn't necessarily a bad thing. Of course, I know that you're teasing apart the symptoms of fibromyalgia and arthritis, which makes things more complicated. But, for fibro specifically, many of us find that we make the most progress through a holistic lifestyle approach to trigger and symptom management, which isn't something that a doctor can help much with. It takes a while to develop, but it is hugely worth the effort. For example, in my case, I'm now completely medication free - although I do take several supplements - and have taken myself from bed bound (with intense pain, fatigue, fog, nausea, dizziness, insomnia, memory and speech issues, IBS, etc.) and miserable to functional, fit (didn't think I'd manage that in a million years!), and with pain levels at around 30% most of the time. Evil flares still pop up occasionally, but a big transformation. It's been quite an adventure :oops:

JayCS mentioned triggers, and that's a great place to start. Triggers can be environmental things or things you consume, like certain cleaning products, fabrics, fragrances, or foods; they can also be physical activities, like doing exercise or chores. However, triggers can also be anything that makes you feel stressed out - and these things are often subconscious, meaning that we don't even notice that something has altered our state until our symptoms start to ramp up. Keeping a notation diary of what happens over the course of a week, how things make you feel, and what happens symptom-wise can be really handy for revealing small triggers that we wouldn't otherwise notice.

A quick side note on diet: while eating healthily overall is important for keeping ourselves well, not everyone with fibro is suited to one particular diet or another. If you've noticed that cutting out gluten and dairy helps, that's fantastic and definitely run with that - but don't beat yourself up for not following a really restrictive regime that makes you miserable and doesn't seem to make much difference! I spent almost a year doing a drawn out elimination diet to see if any food types were a trigger for me, or if diets like fodmap or keto would help. The end result was the discovery that I don't have any food sensitivities at all! Others find eliminating certain foods or food groups helps them a lot - but there's no rule that says what will be right for you.

Going back to stress, as you start to get a clearer sense of your stress-related triggers, there are two things you can do: you can try to eliminate those stress sources from your life where possible; and you can get strategic about moderating your stress response and the impact it has on your body.

I also tried meditation at many junctures over the years, and it didn't click with me at all. Finally, a neuropsychologist explained to me the actual point of doing things like that in relation to fibro - a penny-drop moment, for me at least. Fundamentally, when you're locked into a stressed state, your sympathetic nervous system (responsible for fight/flight/freeze) goes into overdrive, dropping loads of stress hormones and diverting resources away from your body's capacity to rest, digest, repair, and function as it should. Meditation is one of the ways in which we can signal our body that we are safe and that it can switch priority back to the parasympathetic nervous system - responsible for all that aforementioned good stuff. We can train our body to make the switch through things beside meditation, like breathwork, grounding exercises, or simply listening to relaxing music - but the idea is to slow down the functions of our body that we control, with the aim that automatic functions will follow. That therapist kicked my ass and made me practice some form of nervous system switching exercise for about ten minutes two or three times every day. I'm a diehard sceptic and wasn't impressed at the time, but I believe this helped me immensely.

I'll also add that with fibro, we can get stuck in a vicious trigger loop. The pain feels frightening, which triggers a stress response, which in turn triggers more pain, and so on. I learned a trick to help this, which is basically just taking a periodic moment to mentally scan your body, acknowledge your pain, and remind yourself that it isn't a threat. The pain can come and go, but the sensation itself is just a signal - so it's not something you need to be afraid of. This can help break that cycle of constant re-triggering.

When trigger management is combined with things like pacing (see spoon theory, if you haven't already), sleep hygiene, and potentially certain supplements, things can start to stack up towards a difference. But it takes time to figure out, and it's best to look at it as building brick by brick. It takes time to shift the way we live our lives - especially when we're running on low resources.

Have you ruled out the possibility that medication side effects are causing any problems? This seems to be a common issue with nausea and sometimes POTS among fibro sufferers, and both were the case for me. If in doubt, have a think about the timing of starting your meds and check them out online to see if they might be causing trouble. Beyond that, hopefully you'll find that if you can get your fibro to calm down overall, your headaches, nausea, digestive issues, and other "peripheral" fibro symptoms will dial right down too.

On the exercise front, the DOMS is insanely frustrating, I know. The way I got through that was scaling things back to absolute baby steps. I started with ten minutes gentle walking a day, and gradually built that up over many months. Eventually, I could add in swimming, and then later on, very light weight training. Every single time I tried to take a bigger step forwards, I got set right back again - which drove me nuts - but taking things super slow seems to be the key. I can now exercise for around an hour a day, 4-5 times per week, without triggering pain, but if I'd tried that a year ago I would have spent a week in bed :rolleyes:

In the realm of supplements, it might help to know how some of the things that we take help. I'm sure I'm going to miss a lot, but - for example - taking Acetyl L-Carnatine might help with both DOMS and brain fog. Boswellia might help with pain and potentially your arthritis inflammation. Magnesium or GABA might help with insomnia and anxiety. CoQ10 or Alpha Lipoic Acid might help you feel more mentally energetic. The list goes on! Unfortunately, in this realm, we have to make ourselves guinea pigs and try things to see if they help. Some won’t, but some might. Obviously, cost is a big factor here, so start elsewhere if you don't have the budget for supplements just yet. One step at a time!

JayCS mentioned Sunkacola's fantastic advice post for managing fibromyalgia too. I really recommend having a read of that, as it's a great foundation for anyone with fibro. Beyond that, you'll find a lot of recommendations here, so take your time to process, and don't pressure yourself. The feeling that you have to do everything at once will only stress you out - becoming a trigger in its own right! Trying things and getting nowhere can feel really frustrating in the beginning, but trust that bit by bit, you're going to figure out how to navigate this. It won't be perfect, but it can be better, and you can find some control of what you're going through. In the end, you'll be able to teach your doctor a few tricks for their next fibro patient!

Right, I've rambled on enough! Good luck with everything, and ask or vent freely ☀️
 

Fibrosloth0803

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I take lyrica and gaba together and actually take an anti seizure med for headache prevention which has been great. The cocktail side effects do take about three weeks to go away but after that I was fine. I did find taking them at night made a big difference as opposed to morning. You can also start lower dose and ramp up. I also take Vitamins B and D. Before I started this though, I found a doc that supported my journey that helped me through meds and pacing myself to be patient and remember my body is going through something different every day with Fibro so it was my job to listen, take notes of triggers etc. it will take you a while to learn all this and you have to do one thing at a time to really know what things work and don’t work. Hang in there. I did grad school with Fibro, you can do it! Be kind to yourself. Talk to profs about your needs. Be self aware of what you need on any given day and non apologetic for it
 

JayCS

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Hi Fibrosloth and a warm welcome to the forum!
I take lyrica and gaba together ... I did grad school with Fibro, you can do it! ... Talk to profs about your needs.
'Lyrica' is pregabalin. not 'Neurontin' = gabapentin as was asked, so with "gaba" do you mean gabapentin or the amino acid GABA? I also ask because I saw a study yesterday (I think 2018) where pregabalin and gabapentin were combined, fairly successfully and didn't find anyone combining either or both of the two with GABA.
Unfortunately - as you also know/say in the "6 months"-thread - any good experiences with managing work or getting helpful docs & meds will hardly be reproduceable by others, since FM varies in type and severity, we vary with our co-morbidities and our docs. But of course we have to keep at it and at least try to talk to docs & (I prefer: ) physios....
 

sunkacola

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I take lyrica and gaba together and actually take an anti seizure med for headache prevention which has been great. The cocktail side effects do take about three weeks to go away but after that I was fine. I did find taking them at night made a big difference as opposed to morning. You can also start lower dose and ramp up. I also take Vitamins B and D. Before I started this though, I found a doc that supported my journey that helped me through meds and pacing myself to be patient and remember my body is going through something different every day with Fibro so it was my job to listen, take notes of triggers etc. it will take you a while to learn all this and you have to do one thing at a time to really know what things work and don’t work. Hang in there. I did grad school with Fibro, you can do it! Be kind to yourself. Talk to profs about your needs. Be self aware of what you need on any given day and non apologetic for it
Hi Fibrosloth,

Just in case you have not seen it, there's a post I wrote with good advice for managing fibro without using medication. I am not saying you should or should not use the medication you are on, these are just things a person can do to help manage fibro better which can possibly reduce the need for medication. You already know some of it, clearly, but there may be things that are new ideas to you.
Welcome to the forum!
 
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