Hi all...new to the group. I am looking for people who have found or heard of improvement. Hope stories, lol. I have been diagnosed for a year and very little talk is done on people who can live with fibromyalgia in a livable place. Has anyone heard of this and without meds? Cant wait to hear from you
Hello Sarah,
Good to hear from you. Sadly I have not heard of people who have found significant improvement. But there are lots of people managing a good life with this tricky condition, with and without meds. I had symptoms for 2 years before I was diagnosed a year or so ago. So i guess I am in a similar position to yourself. I have found you need to accept this condition, then work out what works best for you. There are lots of ways of managing this. Praps other people will post with their ideas.
Take care, Anne
Hi Anne,
Thank you for the reply. I have done nothing but research on this to see if it is possible. I have read and talked to a few individuals and know they have found improvement, but I came across a person who says she is now living with it fully managed, no symptoms, and this gave me hope so looking for more stories like this.
Thank you very much for your advice.
Hello Sarah,
You are most welcome. Please let us know how you are getting on.
Take care, Anne
Hi Sarah, I was diagnosed in 1998. After a few tough years, I finally stopped all medications (with my doctor's knowledge) and started to feel better. I worked on improving my emotional health and started doing deep breathing exercises. I managed to live relatively symptom-free up until about 2 years ago. I used a combination of mindfulness exercises, physical exercise (mainly walking and swimming), and positive thinking. Last summer I did start on Gabapentin (mainly for nerve pain) and also have tried a couple of different muscle relaxers. The thing I have learned is to appreciate all I have and to stay as positive as I can, it does help quite a bit. So you see, there is absolutely hope. Hugs.
Simple and beautifully written, Auburnm… There is absolutely hope. We persevere.
Hugs,
Sarah
Take Courage Coaching (.org) may be able to help you with that. I am working with them for myself. They promote eating right, good sleep, exercise, and an array of ways to improve self-talk plus other ways to improve our mental outlook. How to distract ourselves from pain, find reasons to be thankful for what we have, and other mood improvements. I'm not sure I'm on the right track yet but we can change our minds and our ways of looking at life. That's what they are trying to teach us to do for ourselves, take advantage of neuroplasticity to improve our thoughts and our disease instead of internalizing and digging a deep, deep hole we need to climb out of. Some references they use: Explain Pain by David Butler, books by Dr Doidge, and 10 Simple Solutions for Chronic Pain by Tearman (solutions to pain management, not cure). My local library has all of these. The exercises included changed my mind about a few things and are helping a little. I'm a work in progress. This is my 6th year with fibro. I'm still working on accepting my diagnosis and I still hurt and I still take far too many meds. Good luck.
I wish I had a magic answer !
It takes work (for me). I work hard at eating healthy, 'real' food. I cook and organize my kitchen so there is no processed or junk food. I exercise almost daily - walking, yoga (big on that!), some weights, some step, some water work - I like variety and the ability to choose ! I rest a lot - I work part time, come home and have some couch time. I basically build rest into my routine. I am in be most nights at 9-9:30 with one or two Elavil in my system. Last night I didn't take one and kept waking up all night, had hot flashes, what a mess ! I have tried other drugs with no luck - felt worse.
FWIW, I also eat strictly gluten free (have been for about 14 years, had a wicked virus and could no longer tolerate it). I am almost dairy free - half & half in my coffee, hard cheese occassionally. Lots of water, lots of stretching.
Every once in awhile I read how someone "cured" themselves...I don't believe it. I live very healthy and that's not enough, it just helps. Sometimes exercise is tricky - hurts before, hurts to start - but I always feel better after. I'm gonna hurt anyway, right ?
Carry one...best of luck.
One silver lining - I dont' know about others but summer is my time - I dread winter - summer is usually more of a relief (except rainy days, pressures changes get me big time !).
Hi Sarah,
I came down with fibromyalgia about 2 and a half years ago. I have had a lot of improvement since then. I have also radically changed my life.
I have ended toxic relationships. This was very painful at first but I feel so free now. I had a lot of therapy and attended recovery groups especially for co-dependency issues. Going through recovery changed my life is great ways.
While my diet is not perfect every day, it is very nutritious overall unlike what it used to be. I definitely have an increase in pain when I eat gluten, dairy, and sugar or any fake foods. I am working on taking my diet to the next level by implementing the Wahl's Diet Protocol. I would recommend the Wahl's Protocol book. It is an excellent health reference book even beyond food advice.
In addition to my diet, I take a lot more time to relax. This has been difficult for me to do with a strong type A personality, but absolutely necessary. And I would say that I am much less type A than I used to be. Living that way causes way too much anxiety. And for me, anxiety will bring on a bad fibro flare faster than anything else. Taking hot baths really helps me to relax. I take more time to pray and read. I also watch some tv now whereas before I felt lazy if I did, so I never did. We need to rest in some way. Being productive all the time is recipe for burnout and sickness.
I am still working on changing my thought life. I used to be very negative. Usually, I have a positive mindset now. Zoloft helped facilitate this change. I tried really hard before I started taking it to change my thoughts and it seemed like no matter how hard I tried, I was unsuccessful. My thoughts raced so fast that it seemed like I couldn't get a positive thought to stick. I resisted taking an anti-anxiety med for a long time. I had an anxiety and panic disorder for over 5 years before I went on it. Had I went on it before I doubt that I would have ever gotten so sick that I had to stop working for a while.
The only med I am on currently is Zoloft. I used to take Clonopin somewhat often but now I am at a point where I only feel the need to take it once every month or so if I cannot get my anxiety levels down. My nervous system is calming down but it is taking what seems like a long time.
I take some supplements. Here is the list: CoQ10, Iron, Vitamin D3, Probiotics, Combo pill of Vitamin B6, B12, Folate, Magnesium (Natural Calm), Relax Max (this has also decreased my need for Clonopin), multi-vitamin, Zinc, Evening Primrose Oil (love this one-helps with period cramping). It took a long time to get the right combination of supplements in working with my Functional Medicine doctor but this combo has worked the best for me so far.
Sleep and exercise help tremendously as well. I am a fan of naps. I still struggle with knowing where the line is with exercise. I still overdo it sometimes and then hurt.
With all of these changes last week was the first week that I had almost no pain. It reoccurred over the weekend when I went to a party and was not compliant with my diet. But even still, I know I can get back to being virtually pain free-it is possible but it takes a lot of effort. I wish it were easier but I have not found that to be the case.
I encourage you do whatever you can to make the healthiest choices possible. Every healthy choice you make will get you that much closer to relief. I balance that with giving yourself grace when you fall short because we all do. Fibro is a perfectionist nightmare-that is why I am working myself out of being perfectionist. See the big picture of life and enjoy every bit of it you can:) Blessings!
Hi Sarah,
I was diagnosed with FIBRO 2011 or 2012.the Dr s weren't sure what was the cause of me passing out at work on April 21,2010.I was rushed to the hospital by ambulance.the diagnosis was HYPOTHYROID.I saw my Dr the next day and he ordered an brain test to see if I had suffered a seizure.it was negative but I wasn't getting better.the vitamin b12 level was checked it was low and prescribed prescription b12.I wasn't getting better so my Dr suggested I see a specialist in a bigger city.I have 2 sisters that live in a bigger city and I went to see an internist after exams,blood tests the Dr didn't know and referred me to a rheumatologist.he eventually diagnosed me with FIBRO but only prescribed pain medication nothing else.I was his patient for 2 years and after many pain medications nothing worked and it was getting to hard to travel so far.I went on the internet and found another rheumstologist.actually she's a nurse practitioner for a rheumatologist.on the first visit she spent a whole hour with me.her names Kathleen and she wasn't happy with the condition I was in after being treated by the former rheumatologist.she said after trying all the drugs with no success she would RECOMEND gentle stretching excercis,and aqua therapy.I having taken any prescription pain medication for 2 years.I walk,do gentle stretching exercises,I pace myself by sitting in my recliner for 10 minutes after each walk or after coming home from an activity.I hope this helps if you have any more questions or want more information just ask me.God bless you.
Hi, Sarah-welcome to our group! I was diagnosed with fibro last year in March. It has been a struggle at times; as a matter of fact, I am in a flare right now-lol. And I can laugh because I have learned that while I may feel crappy today, tomorrow I may well feel great! Yes, tomorrow is another day. My motto. The reason for my flare at present? Most likely a combination of things-I had 3 grandchildren stay Friday & Saturday night with fun stuff to do & church on Sunday, lots of outside time with my severe allergies=flare. BUT prior to this flare I have been feeling GREAT for a whole month. I also have Hashimoto’s disease & osteoarthritis & degenerative disc disease. So, I have cleaned up my diet to eliminate inflammatory foods (I am allergic to NSAIDS). No gluten, no processed foods; I am close to eliminating all sugar & dairy. I have found this has helped me to feel so much better! I have gone as long as a week at a time with nothing more than Tylenol for pain. I have prescription for Tramadol for pain, which I try not to take unless my pain is severe. I do take generic version of Cymbalta each day. I also have prescriptions for a muscle relaxer & trazodone to help with sleep-I do not take these daily. I would love to be drug-free, lol. Right now I will settle for mostly pain-free! I also take supplements as many of us do-my B vitamins, D-3, probiotics & magnesium, flaxseed oil & krill oil; I take herbal anti inflammatory-turmeric, ginger, & cat’s claw. Milk thistle for my liver. We have a Mennonite health store nearby & I get a liquid called 3 in 1 that has a lot of herbs blended to fight against inflammation. You just use 1/4 tsp in a beverage 1-3 times a day. It tastes nasty but I believe it has really helped me to feel like my old self again. And I had been feeling great for about a month before this recent flare. One thing I need to do is to better manage stress. I still work full time & days like today when I am out the 2nd day due to this flare–I feel torn as to what I should or should not do. I know I need this 2nd day to get better enough to go in to work tomorrow but…ideally I would just be a stay at home wife. But right now is not the ideal time as far as our bills go, lol. So, we all have a lot in common, fibro included! Sarah, attitude is key for me, & like I said, tomorrow is another day & it may be a great day!
HUGS from Deb
Hi Sarah,
I have been managing this disease (I refuse to call it a "condition" or a "syndrome"--that makes it seem less than what it is {like the people who say "Oh, you have fibromyalgia? I get tired, too!}) for 25 years.
I can't say that I have had any improvement--some days are better, some worse, sometimes I flare for months, sometimes I do pretty darn well--but overall I have found a few things that help me manage with a minimum of meds. I only take ibuprophen (not every day but at least once a day most days) and on really really bad days I may take a Tramadol.
I stretch a lot. I drink lots of water and try to eat a healthy diet: no caffeine, limited sugar, lots of veggies and lean protein, whole and multi-grain breads and cereals. NO fast food, period! Very little fried food. If I do want some pie or cake, I just accept that I will pay for it with a bit more pain.
I walk every day. I have a dog, so walking is not really a choice, but a 10 minute walk helps reduce pain amazingly well. A half hour or more in the woods, with fresh air and sunshine, does wonders!
I drink green juice--in my case barley grass juice. This stuff does more to reduce pain than anything I have tried. Yes, it tastes nasty at first. I mix it with juice. You can get this online at any number of places, it comes as a powder.
I eat yogurt to help control my IBS. It is a huge help. My fav is the little cups of Activa in vanilla. It satisfies my sweet tooth, too!
If I feel really good (for me) I hike. If I feel rotten I rest. About one day a week I do a "bed day", during which I do little more than read, watch TV and nap. I always feel much better the next day.
I couldn't live without my heating pad. It soaks away so many cricks and aches and spasms. Hot baths are great too, and lying in the sun for a few minutes (not sun tanning, just soaking up the vitamin D for 5 minutes or so) feels *so* good!!
I am sure others have other "hacks" for managing, but these things work for me. I hope this helps.
Hugs, Kimberly :)
Hi
I have had fibromyalgia since 2002. At first I wouldn’t believe it so fought through the symptoms trying to continue my normal life!! As you can imagine that was a bad plan. I then became very low in mood and self pity. I gave up on my social life, struggled at home and work. I then realised something had to change and acceptance that I had a chronic condition for life. It has taken me a long time to learn to manage my condition (plus crisis moments). I have chosen not to have regular medication as being a nurse I am worried about side effects. I have learnt to pace myself and enjoy all the little things I.e. walks, reading a book, listen to music. I have found I can manage low impact yoga/Pilates with meditation, these really keeps me positive and emotionally well. I have lovely support from family and friends who have been patient and understanding.
Probably the biggest change in the past 6 months is semi retiring. Although I have had a wonderful career I realised that it was very stressful and this has contributed to fibro crisises. Now I realise I can control the level of stress in my life better. I am now looking at my diet as have read that an alkaline diet can be helpful in FM cases. Also I have been monitoring my level of sleep as we all know this can be a huge problem for FM sufferers.
As you can see from other peoples replies, what works for one person doesn’t for another. It is very tiring trying out new ideas but if you take it slowly gradually it may work and it gives you a real lift.
Good luck and best wishes.
Hi, Sarah.
It's wonderful to see how many have shared their success stories. I did want to caution, however, if you are considering the addition of any supplements or making changes to your diet protocol, you consult first with your medical care team as just because supplements and food are "natural", does not mean they can not be dangerous. Your doctors should be able to help you determine what's best for you.
Hugs,
Laurie
Journal. Not mentioned so far, but it is very helpful to journal. Write down symptoms, write down if you add or subtract something (food, meds, vitamins or minerals, exercise) and keep track of changes in mood, pain, tiredness, etc.Sometimes when I go back through I'll notice that my frequent cough started when I started taking x. How long did I do y and how did it make me feel. Your true friend is your journal.
Hi Sarah, don’t know if you can manage any kind of productive life without Meds. Lyrica has worked best for me so far. The side effects are you talk none stop for about 2 weeks when you start at least I did, I could not shut up even in my sleep. And you are a little off kilter for the same amount of time, so no driving. Then it leveres off and you don’t realize you are on them. I am so far along I am on morphine pills. Then it is not so bad. The Lyrica takes the edge off and quites the nerve pain. And get ready for the itching, here then there, none stop all day, hopefully you will not have this systems. It drives you crazy. I know people out there agree. And lastly find a good doc. That knows the disease. It may take some looking around. Arthritis or rhemotlogist. I hope I spelled that right or you understand what that word is. Good luck! Stay Strong! Have a pain free day! Donna
Hi Sarah,
Welcome aboard.
I feel that I'm doing better with my 'friend' Fibro than I was 3-4 years ago when I was first diagnosed with fibromyalgia after about 7 years with an auto-immune disease that caused pretty awful pain and lifestyle impact.
The things that have helped me most:
- Water exercise. I go to a YMCA that teaches the Arthritis Association aqua class. The classes are self-paced and easy on joints and sore muscles. Atrophy can be one of the side-effects of fibro, so it's important to keep moving.
- Meds. It took over a year to get my meds to a point that I feel they're really making a difference. My Rheumatologist has been great working with me on this, balancing and rebalancing the mix. Lyrica and Cymbalta are what's doing it for me, especially helping with the fatigue and pain. My Personal Care Physician (PCP) works with my Rheumy, but the PCP prescribes Tramadol for the over-the-top pain and Trazadone for sleep. She (my PCP) says that while I should use as little of these as I can, she also says that it's really important for fibro folks to get a good night's sleep, so take what I need to cope with the nighttime pain and sleeplessness.
- Doctors that care, listen, and work with you. If they don't, fire 'em and get better ones.
- Friends and family that support you and look out for you. I told mine the spoons story (elsewhere on these boards - or ask and I'll reprint it here). Now my whole friend group has adopted the question 'do you have enough spoons to do that?' - meaning do you have enough energy to finish that task or activity if you start it.
- This discussion group. This is the best place to laugh, cry, and especially bitch! We'll listen because we've all been there at one time or another.
Wishing you gentle days and restful nights,
Marilyn, the Silicon Valley Crone
I've had fibro and myofacil pain syndrome for 30 years. I DO take meds, but my pain is very bad. I exercised my whole life, but got this anyway. Now I can barely walk. I want to find a warm pool, as water exercise, swimming is one of the best for this. I hope you can find something to ease the pain. Weather rchanges can affect it. Take it easy when you can. Try hot baths.I wish I had more to help you, but I am just not even able to help myself. Bless you. I hope you DO feelbetter
Jenny J said:
I've had fibro and myofacil pain syndrome for 30 years. I DO take meds, but my pain is very bad. I exercised my whole life, but got this anyway. Now I can barely walk. I want to find a warm pool, as water exercise, swimming is one of the best for this. I hope you can find something to ease the pain. Weather rchanges can affect it. Take it easy when you can. Try hot baths.I wish I had more to help you, but I am just not even able to help myself. Bless you. I hope you DO feelbetter
I guess I sit around in my own little pity party. I have been suffering for 10 yrs. but nothing like you. Bless your heart. Hope you have good Doc’s. Weather is different every time , today it’s raining just got pea size hail. Not to bad today but I do feel it. I guess I sound like a pill pusher but Lyrica works for me. If you are in a state where you can get it , would you consider weed it really helps. You do not have to smoke that much. Just a suggestion. Write me anytime. Rant, Rave, B@&$h all you wat, I’ll be here. Feel better chat soon. Big Soft Bear Hugs