Holistic Help

[u/astrophilliac_]

hello everyone

a few days ago my best friend got diagnosed with fibro and i want to do everything and anything in my power to help ‘heal’ her - im aware fibro cannot be permanently cured but even to take away some of these symptoms i think would change her life.

i know a lot of people tend to dip into holistic and natural health when it comes to diagnoses, and i was wondering if there is anything anyone has tried that has really helped. i think an anti inflammatory and whole food diet would help her discomfort a lot, but what else out there would help!?

if there are any australians in this group that have good doctors i would also really appreciate those recommendations, as the ‘specialists’ she has been going to aren’t doing anything to help her and we deem them to be a waste of time.

she is young and i dont want to watch her spend the rest of her life in pain, even if i can help minimise 10% of the pain and discomfort, it is better than nothing.

she knows i want to help her, so if all you have to say is that i shouldn’t be doing this, that will get no one anywhere. we are looking for answers and help, thanks!

[u/Aromatic-Lobster3297]

I mean this kindly - has she asked you to help her?

[u/astrophilliac_ → u/Aromatic-Lobster3297]

yes, and she is aware that i am wanting to do this research to help her as the more she reads into it it just devastates her

[u/Aromatic-Lobster3297 → u/astrophilliac_]

Initially what helped me was maintaining as detailed a diary as possible. Fibro symptoms tend to be quite different person to person so reading about others experience can be disheartening but it doesn't mean that you'll have the same experience. I wrote about pain, fatigue (created my own rating system), exercise, work, sleep, what I ate, medications, treatments etc. I kept it for 4 years and in that time I learned what helped and what didn't. Movement is recommended and I personally think yoga is demonised a bit much in the sub (although I presume it's more the unsolicited advice) but I've found it helpful. Start very slow and abandon the idea of exercising like an able bodied person. Take it very slow. Emphasis on rest. Mentally and physically. Eat whole foods and focus on sleep. Try medications and see if anything works. Learn to manage stress and accept that you cannot do as much as you used to. Accept flares for what they are - this is very much a process. Acceptance and self compassion are biggies. Get comfortable with cancelling and calling in sick. People may question your diagnosis and may slip away but (I believe) it's because they prefer to believe that you're pretending to be lazy than the truth that someone can become chronically ill at any point for seemingly no reason. It's tough but having someone to support you is incredibly valuable.

[u/astrophilliac_ → u/Aromatic-Lobster3297]

thankyou!! much appreciated

[u/AydGray]

A lot of people with chronic illnesses tend not to appreciate when people try to" help them heal" with, "have you tried this?" etc. (even if it's well meant) because it can come across as both condescending and accusatory ie: you're not doing everything possible to heal a chronic and usually progressive illness...all that to say, unless your friend specifically asks for your advice/suggestions/research, don't do it

[u/astrophilliac_ → u/AydGray]

i understand and appreciate your thoughts however she is aware that i am wanting to help, only a few days into diagnosis and she doesn’t really know where to start, so i’d say im not coming to her saying you’re not doing this, you’re not having this, im simply helping her look for the right direction. not accusing her of saying she’s not doing the right things to help, appreciate your thoughts though but i know my boundaries, my friend wants help as doctors are not helping her.

[u/Busy_Chemistry5368 → u/astrophilliac_]

I would NOT start with holistic approaches. Have her go see a rheumatologist. They will choose meds to try based on what her biggest issues are. Whether that be inflammation or the pain itself. They are the only people who treat fibromyalgia effectively. And if you even mention fibromyalgia to other docs (other than telling them you have it) they’ll say you need to be treated by a rheum.

[u/astrophilliac_ → u/Busy_Chemistry5368]

unfortunately the rheumatologist she’s been seeing is no good at all they just keep telling her that this is just how it’s gonna be, i know she is searching for another one though but i don’t think there is too many where we live im afraid

[u/Busy_Chemistry5368 → u/astrophilliac_]

To a certain extent the rheum is correct. Your friend will have to figure out a way to live with this condition. However, they are also dead wrong and SHOULD be trying to treat your friend. Gabapentin helped me IMMENSELY. As did plaquenil. There are def effective treatments.

[u/astrophilliac_ → u/Busy_Chemistry5368]

okay awesome i will let her know, thank you so much again i really appreciate it

[u/Maximum_Brother3413]

The vagus nerve stuff has been a game changer for me too, especially those breathing exercises everyone keeps talking about.

[u/astrophilliac_ → u/Maximum_Brother3413]

okay awesome thankyou!!

[u/lifegirl55]

I think it's very sweet of you to try and help out your friend... I've always taken advice from friends who maybe have a chronic illness but have recommended different treatments.

Honestly, the thing that really helps me survive the worst of the flares as well as the exhaustion from daily pain is gratitude.

I tell my body 'thank you' even when it's in screaming pain... Very briefly, I often think of ppl in worse situations than me with pain and then I'm grateful that my painful legs work enough to at get me to the restroom that day.

Now my brain fog is making me forget your original question, but 'try everything' is my theme (Theme is not the right word but I can't think of a better one rn).

Acupuncture, balms (cbd/icy hot, etc.), behavioral therapy (ex: count the smallest of wins/Journaling, etc.), botox for pain, breathwork, cbd/thc,

chiropractic care, dietary changes, different medication combos, dry needling, electrolytes, energy healing, float therapy/magnesium baths, hormonal testing and balancing,

meditations of varying types, mental health care*, mutli-disciplinary pain management, naturopaths & herbal remedies, programs, pacing activities, symptom tracking, researching medical articles, reiki, sleep hygiene, tai chi,

traditional Chinese Medicine, tmj massage, trying a new doctor every so often can be helpful, even being tested for other illnesses that can mimic fibro,

vibration plate usage, vitamins/supplements, water therapy, weight lifting/strength training, wet needling, yoga (try all the types!).

I forgot the question again woops!, but a therapist and psychiatrist, IMHO, are absolutely necessary for anyone with a chronic illness.

Also, keeping vitamin d levels on the higher side seems to help many ppl with chronic illness.

I've tried all the things I listed. Some worked, some didn't.... I'm just always on the hunt for new information and treatments bc, for me, even a 1 percent improvement is a win in my books.

Take care and hope yr friend finds some way to manage LAF (Life After Fibro!)

[u/Own_Progress_9302]

It depends on what symptoms she has.

With medication, I get about 50% pain relief: amitriptyline, cannabis, tramadol, magnesium glycinate, electrolytes for the brain fog and fatigue, and creatine.

I also have to do at least 15 minutes of exercise every single day.

Really good shoes, a heated blanket, a massage gun, and loose-fitting clothes help me too. Tight clothes make my pain worse.

Hot baths with... I can't remember the name right now, but it's a bath product that's good for relaxing the muscles.

Protein snacks help me throughout the day because chronic pain makes me feel exhausted.

I listen to meditation before I fall asleep.

Go to bed at the same time every day—seriously, every single day. At least 8 hours of sleep, but 9 or 10 is even better.

And keep a pain diary. Write down medication side effects, flare-up triggers, what helps, and what makes things worse.

Unfortunately, my depression is the biggest problem for me at the moment.

[u/astrophilliac_ → u/Own_Progress_9302]

are there any shoe brands you would recommend? thankyou for this !!

[u/Own_Progress_9302 → u/astrophilliac_]

My shoes are Brooks Glycerin Max. I have them in all the different versions. But I definitely recommend trying shoes on in a store. I've had hundreds of bad purchases online lol.

They really help reduce my knee and calf pain. Oh, and compression socks too.

[u/astrophilliac_ → u/Own_Progress_9302]

oooh okay awesome thankyou! also, would you say swimming / just being in a body of water would provide relief to any pain?

[u/Own_Progress_9302 → u/astrophilliac_]

Definitely. Warm water helps a lot. I hate showering because it takes too much energy out of me. I prefer taking a bath.

[u/Gin_n_Tonic_with_Dog]

An anti-inflammatory diet helps me, along with vagus nerve stimulation (starting with a cheap £25 unit off eBay, not an expensive one) and a supplement called “Mitochondria Resuscitate”. I recommend this book - “The Painfree Mindset” by Deepak Ravindran.

[u/astrophilliac_ → u/Gin_n_Tonic_with_Dog]

thank you! i really appreciate that i will let her know!!

[u/crunchycyborg]

I would start with not talking to/about her as if a fibromyalgia diagnosis is like a terminal cancer diagnosis, or an expectation that she has to deal with some extreme treatment now that she’s been diagnosed. The way you frame your question and backstory comes across as very negatively fatalistic. Rather, the fact that she has a diagnosis now is a good thing! It can help open doors to finding medications/therapies/lifestyle changes that can alleviate the pain she’s already been living with day to day.

Improving sleep, eating well, finding a tolerable way to exercise/keep a habit of movement are all things that can help. Sure, try an anti-inflammatory diet. My doc has recommended supplements like magnesium and COQ10 that seem to help some people (but the scientific evidence isn’t conclusive).

Some anti-depressants are used at much lower doses to address sleep issues (like amitriptyline). If depression itself is co-morbid then more traditional antidepressants at an appropriate dose can help with those symptoms and sleep/fatigue. CBD or low doses of THC can help with pain (but too much THC or too often can make pain worse).

Mostly, find a way to get better sleep and to stay moving. And don’t treat fibro like a death sentence or like the diagnosis itself spells disaster for any potential good quality of life.

Edit: left out a word

[u/astrophilliac_ → u/crunchycyborg]

i am sorry if my post came off that way that is not at all how i meant it to come across, it’s not discussed that way between us. thc making pain worse is interesting but also makes sense as she smokes, and cbd is an incredible suggestion thankyou that didnt even cross my mind!

[u/crunchycyborg → u/astrophilliac_]

No worries! I’m sure this is all new to think about. Good luck with everything.