Chronic pain issues - suggestions for coping with flares/brain fog

jrbb03092

I have fibromyalgia, arthritis and chronic migraines.

I seem to do well when I'm just dealing with my baseline of every day pain but the moment I hit a flare or more than a day of migraines (I can have 4-5 days at my worst), I default to old behaviours.

I find it hard to get out to walk when it takes all my energy just to get out of bed and take a shower and I find it hard to eat well when my brain's barely online enough to say "no, comfort foods aren't going to make things any better".

I'm assuming there are others here dealing with the same kinds of issues. Do you have any tips or tricks or anything that helps you push through those times?

I am lucky enough to be a stay at home mum and I can adjust my schedule as needed (daughter is older) so mentally I'm in a good place (there's no guilt or anxiety associated with my being ill).

And I feel like, aside from migraine attacks and fibro flares, my head is in a good place and I /really/ want to succeed this time. But when those two things hit, it's like my brain and body shut down and I'm just operating on auto-pilot until they clear. Help?

MelaniaTrump

Have you tried a no high processed food diet or a chemical additives free type of diet? Like avoiding msg?
My library is full of books on the subject and it seems that for a some people food can help.
Worth a visit to yours. It's free.
Open your diary to the public so people can spot mistakes? Mines open.
Include any drinks with lots of ingredients, even if they are calorie free.

jrbb03092

I am actually vegetarian and I eat a lot of beans, lentils, grains, vegetables and fruits. My core diet is actually quite good with very little processed food and most meals made from scratch at home. I don't eat anything with msg, artificial sweeteners, etc.

It's only when I'm in these flares/attacks that I go out of my way to binge on crap (family members - who have no problems with portion control, etc, have junk food in the house and I go nuts on it).

I don't open my diary because I know I wouldn't be honest if others were reading it.

None of this is a what I'm eating issue (per se) although I thank you for taking the time to respond. I'm more asking how people who deal with my kind of chronic pain deal with how they mentally feel during those attacks/flares.

All the books tell you to be kind to yourself and accept how you're feeling and go with it but honestly? If I go with not feeling like walking or other activities because of pain, I would miss half the month or more.

I find it really hard to think logically when I'm in the middle of them. The whole thing you'd go through where you tell yourself that these actions are not helping just doesn't happen. I actually lose whole days to pain that doesn't stop. So I'm looking for suggestions for things I could do - tips and tricks - that could help me override that (not the actual pain, but the brain fog/falling completely off track that goes with it).

Colorscheme

My suggestion is start slow. I have chronic illnesses too. Maybe do gentle yoga and start off doing a couple of minutes, and then each week increase the amount. Stop if you have to, it's ok.

I'm a stay at home parent as well, I know how overwhelming it can be. My son is 18 months so he needs mommy all the time.

mbaker566

start slow. realize that you might feel like you can do more till the next day.
i find mint helps clear my brain. or spicy food.

for me, i decided i can either hurt and be unhealthy or hurt and healthy. I also know i have to take rest days sometimes. sometimes, my brain is too foggy. sometimes, my balance is off, sometimes, my joints hurt too much.

StacyChrz

While I commend you for making most of your meals at home I have to wonder if it's still something that you're eating. I suffered from migraines, joint pain, fatigue, brain fog and severe daily heartburn. My elbows hurt so much that I could barely lift anything that required me to grasp and hold. I cut gluten from my diet and these things cleared up within about a week. I can tell when I've had something with gluten because I'll be headachy and have heartburn the next day (so I know I'm going to be miserable tomorrow, lol). It takes repeated exposure to bring back the joint pain. I feel like there are so many gluten free whole foods out there that you could just do a short test and see if it works for you. Give it a week and if you don't notice an improvement you can tell me I'm wrong.

In the meantime drink plenty of water, make sure you're getting the right electrolytes and get plenty of rest. Good luck!!

Colorscheme

StacyChrz wrote: »

While I commend you for making most of your meals at home I have to wonder if it's still something that you're eating. I suffered from migraines, joint pain, fatigue, brain fog and severe daily heartburn. My elbows hurt so much that I could barely lift anything that required me to grasp and hold. I cut gluten from my diet and these things cleared up within about a week. I can tell when I've had something with gluten because I'll be headachy and have heartburn the next day (so I know I'm going to be miserable tomorrow, lol). It takes repeated exposure to bring back the joint pain. I feel like there are so many gluten free whole foods out there that you could just do a short test and see if it works for you. Give it a week and if you don't notice an improvement you can tell me I'm wrong.

In the meantime drink plenty of water, make sure you're getting the right electrolytes and get plenty of rest. Good luck!!

You're not a doctor, you shouldn't be giving advice as to what it could or couldn't be.

miss_ek

I know exactly what your feeling... You need to eliminate GLUTEN completely that is what causing all your flair's and pain... Try it for at least a week or 2 and see how you'll start feeling

khhregister

I get migraines 2-3 times a week during bad spells, more like 1 a week on a good week. I feel you.
I try to be kind to myself in ways other than food during those times. I won't do any chores that require me to drive in bad traffic, for instance. I have the built-in excuse that my vision can be disrupted, but it's also something I hate to do so I give myself the day off from things like that.
Another thing I'll do on those days is take the extra time to give myself a face massage and put a mask on my face and soak in the tub.
Things like that.

StacyChrz

Colorscheme wrote: »

StacyChrz wrote: »

While I commend you for making most of your meals at home I have to wonder if it's still something that you're eating. I suffered from migraines, joint pain, fatigue, brain fog and severe daily heartburn. My elbows hurt so much that I could barely lift anything that required me to grasp and hold. I cut gluten from my diet and these things cleared up within about a week. I can tell when I've had something with gluten because I'll be headachy and have heartburn the next day (so I know I'm going to be miserable tomorrow, lol). It takes repeated exposure to bring back the joint pain. I feel like there are so many gluten free whole foods out there that you could just do a short test and see if it works for you. Give it a week and if you don't notice an improvement you can tell me I'm wrong.

In the meantime drink plenty of water, make sure you're getting the right electrolytes and get plenty of rest. Good luck!!

You're not a doctor, you shouldn't be giving advice as to what it could or couldn't be.

While I'm not a doctor I have suffered from very similar symptoms and found that removing gluten made a huge difference for me. I simply suggested she try eliminating gluten to see if she had an improvement, and if not to go back to what she was doing. She asked for suggestions.

Colorscheme

StacyChrz wrote: »

Colorscheme wrote: »

StacyChrz wrote: »

While I commend you for making most of your meals at home I have to wonder if it's still something that you're eating. I suffered from migraines, joint pain, fatigue, brain fog and severe daily heartburn. My elbows hurt so much that I could barely lift anything that required me to grasp and hold. I cut gluten from my diet and these things cleared up within about a week. I can tell when I've had something with gluten because I'll be headachy and have heartburn the next day (so I know I'm going to be miserable tomorrow, lol). It takes repeated exposure to bring back the joint pain. I feel like there are so many gluten free whole foods out there that you could just do a short test and see if it works for you. Give it a week and if you don't notice an improvement you can tell me I'm wrong.

In the meantime drink plenty of water, make sure you're getting the right electrolytes and get plenty of rest. Good luck!!

You're not a doctor, you shouldn't be giving advice as to what it could or couldn't be.

While I'm not a doctor I have suffered from very similar symptoms and found that removing gluten made a huge difference for me. I simply suggested she try eliminating gluten to see if she had an improvement, and if not to go back to what she was doing. She asked for suggestions.

Well not everything has a cause. I have fibro too and POTS, and joint pain but that's from a car accident i had 3 years ago. I actually feel better the more active I am so I started with Leslie Sansone's walking videos on YT and built up over months. Now I can walk 5-7 miles a day with some breaks in between.

I hear so many people here say "oh all I had to do was cut out so and so food and I was fine!"

Ok, great it worked for some people but that doesn't mean it's the answer to everything. I mean, it's not even known how fibromyalgia even happens and it's also tied up with other existing conditions.

kshama2001

I have MCS, which has some overlap with FM. I avoid actual triggers and talk to my limbic system about things it's overreacting too that it should not.

First I read The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science and then I went to a neural retraining workshop based on neuroplasticity: http://www.dnrsystem.com

There were people in my workshop with FM. http://www.dnrsystem.com/fibromyalgia.html

Immediately afterwards, I was able to ride in a new car without the new car smell making me sick and get into a relationship with a man who smokes and uses scented personal car products. (I did have to ask him to change his laundry detergent to an unscented variety, however.)

kshama2001

Colorscheme wrote: »

StacyChrz wrote: »

Colorscheme wrote: »

StacyChrz wrote: »

While I commend you for making most of your meals at home I have to wonder if it's still something that you're eating. I suffered from migraines, joint pain, fatigue, brain fog and severe daily heartburn. My elbows hurt so much that I could barely lift anything that required me to grasp and hold. I cut gluten from my diet and these things cleared up within about a week. I can tell when I've had something with gluten because I'll be headachy and have heartburn the next day (so I know I'm going to be miserable tomorrow, lol). It takes repeated exposure to bring back the joint pain. I feel like there are so many gluten free whole foods out there that you could just do a short test and see if it works for you. Give it a week and if you don't notice an improvement you can tell me I'm wrong.

In the meantime drink plenty of water, make sure you're getting the right electrolytes and get plenty of rest. Good luck!!

You're not a doctor, you shouldn't be giving advice as to what it could or couldn't be.

While I'm not a doctor I have suffered from very similar symptoms and found that removing gluten made a huge difference for me. I simply suggested she try eliminating gluten to see if she had an improvement, and if not to go back to what she was doing. She asked for suggestions.

Well not everything has a cause. I have fibro too and POTS, and joint pain but that's from a car accident i had 3 years ago. I actually feel better the more active I am so I started with Leslie Sansone's walking videos on YT and built up over months. Now I can walk 5-7 miles a day with some breaks in between.

I hear so many people here say "oh all I had to do was cut out so and so food and I was fine!"

Ok, great it worked for some people but that doesn't mean it's the answer to everything. I mean, it's not even known how fibromyalgia even happens and it's also tied up with other existing conditions.

A food elimination diet is a really easy thing to try and preliminary studies show it can be effective for at least half of the people who try it.

https://www.verywell.com/the-elimination-diet-for-fibromyalgia-cfs-715721

...Research shows that at least half of the people with FMS or ME/CFS get significant relief from symptoms - including pain, fatigue, headaches, bloating and breathing difficulties - by eliminating certain foods. The most common problem foods are corn, wheat, dairy, citrus and sugar, but it varies from person to person.

http://www.celiac.com/articles/118/1/Elimination-Diet-May-Ease-Fibromyalgia/Page1.html

...After the elimination of the foods, nearly half of the patients reported a significant reduction of pain, and 76% reported a reduction in other symptoms such as bloating, heartburn, headache, fatigue, and breathing difficulties. Two patients, however, reported an increase in symptoms.

After the two-week period the patients were re-introduced to the foods one at a time every 2-3 days, and many of their symptoms returned. The most common problem-causing foods for the patients in the study were corn, wheat, dairy, citrus and sugar. Dr. Edman emphasized that the findings of the study are preliminary and more research in this area needs to be done.

jrbb03092

Thanks everyone for the advice so far. I have seen a number of rheumatologists and neurologists over the years (on top of the migraines, I also suffered a severe head injury roughly 6 years ago and I'm still having issues from that on occasion).

The first thing they do is check my diet. I have done elimination diets (checking for allergens), low-acid diets (stomach issues), low FODMAPS diets, gluten-free (for two months), etc. None of these have made any difference.

Anyone suffering any kind of chronic issues can definitely benefit from looking for food sources for those issues but in my case, we've been there, done that.

I have mild to medium intolerances to onions and garlic and so I tend to cut them out or way down in recipes but they don't affect anything but my digestive issues.

I think finding ways to be kind to myself (or comfort myself) that don't involve food when my flares/migraine hit may be key. It's just getting my brain to turn to those that's difficult so maybe I need to make a list when I'm feeling better.

LovingLife_Erin

Hi! I have chronic pain plus a chronic illness (gastroparesis... Which causes further pain). In general, I find I have less brain fog when I can go for a walk or something each day. Moving seems to keep me mentally sharper although I am restricted to low impact and have had to limit weights due to increased nerve damage in my hand. Perhaps trying some light low impact stuff like walking, swimming, etc. To deal with pain (other than my tray full of meds)... I personally find heat really helpful. I used to get a lot of migraines as well and found that they are sometimes food related (red dye for me is an absolute no no as a tiny amount is a trigger) or weather related. Staying on top of my neck pain also helps. Then again, these things may all be different for you. Are you hooked up to a pain clinic? They may be able to help further.

In terms of losing weight when all you want to do is curl up, try pre-logging your food and allow yourself one small treat a day (log it before you eat so you know if it can fit... I find allowing myself a treat each day helps me still enjoy life). Otherwise it truly is just a matter of wanting it and being persistent. If you want non- food rewards for losing weight, then make a chart (ie: lose 5 lb= get nails done, lose 10 lb= get new top, etc.). Fill it with things you enjoy!

lorrpb

It's very difficult when you're in pain. Pain can make you think you're hungry when you're not. I find that any kind of movement, even a short walk, helps my various sources of pain and the more I can walk or exercise, the better I feel.

Consider planning your meals a week ahead, buying the needed food, and eliminating the tempting/comfort foods from your pantry & frig. If it's not there, you won't eat it. If you're able to get to the store to buy unhealthy food, you should be able to take a walk instead. There are seated exercise routines on TV and you tube, so you might investigate these.

Various foods & dietary changes can affect some people, but they're not a given with these conditions. They involve very complicated processes which, as mentioned above, are not well understood.

hopeandtheabsurd

Being able to hit the easy button when I am not feeling well is key for me. For example, meals prepared when you feel well that you can freeze and just take out and microwave. A list on the refrigerator of easy to make foods that you might not remember you have the ingredients for in the midst of a 5 day migraine. Perhaps try to create a healthy habit that feels comforting without the extra calories like a fancy tea you only drink when not feeling well.

On the exercise front, if the weather and migraine are not extreme maybe just try to get outside and sit on the porch (in the shade or after dark if you are light sensitive with migraines). Maybe you will then feel inspired to walk to the mailbox, maybe around the block, or maybe you will just get benefit of listening to birds chirp and feel the wind for a bit without pushing yourself too hard.

MissusMoon

miss_ek wrote: »

I know exactly what your feeling... You need to eliminate GLUTEN completely that is what causing all your flair's and pain... Try it for at least a week or 2 and see how you'll start feeling

As someone with fibromyalgia as well, I can say for certain this is ABSOLUTELY NOT TRUE.

MissusMoon

I have FMS as well. The key for me has been finding a terrific doctor and getting it under control. This is pain management, good sleep, and making the most out of the time you do have energy. I don't want to discuss meds and more personal medical stuff on an open thread, but feel free to message me and/or add me as a friend.

Tydeclare44

Before I start, I just want to say I am in no way connected to this book. All it did was change my life.

I had crazy brain fog. Like, can't focus on a task level of brain fog. I do not have a chronic pain issue, but I always had aches and pains. So I turned my focus on parts of my life that were lacking, and one of things that stuck out was my sleep. I read Shawn Stevenson's book called Sleep Smarter, which helped my get the best sleep of my life by getting my hormones in check. By doing this, it improved every aspect of my life, including willpower and clarity to make proper food choices. Again, I cannot speak to any chronic pain issues, but as for brain fog, mine is completely gone after following this book's advice.

dawnmcneil10

I'm going on record saying I have not been diagnosed with fibromyalgia however a friend who has been suffering with it for years is convinced I've had it for years and found a way to beat it or shall we say manage it.

I used to suffer horribly with what I thought was nerve damage related to a car accident. On top of that was stomach bloating, lots of aches and pains and so many sleepless nights. For many of you I don't need to continue with all the "other" issues associated. I thought I was crazy for the smell issue but I see someone else has it too.

I'm blown away that you found garlic can be an issue for you, it's one for me as well and since you're vegetarian my other trigger won't matter but it's beef/red meat. I also found I could eat garlic if minced (in jar) or dried/powdered but fresh garlic is more damaging and any of these items mixed with mushrooms can trigger a negative reaction.
I also avoid excess sodium, don't drink soda, caffeine limited to 1 cup a day and have found the biggest trigger of all is stress!

Someone mentioned yoga, I agree completely even if all you do is stretch but I warn you I had some bad nights if I did it too close to bedtime, about 2-3 hours before sleeping I'm fine. The meal planning and preparing meals ahead of time is big too for when you really just don't have the energy to deal.

For a while I slept with one of those neck roll pillows filled with buckwheat and that seemed to help some.

A friend of mine just had that middle part of the ear pierced a few months ago to stop migraines and it's been like a miracle for her so that might be worth looking into.

I can honestly say I don't remember when the "nerve damage" stopped but I can say I know it was after I lost a huge chunk of weight. On the days you can do, on the days you can't just simply try, call a friend, reach out for help, remember you aren't alone.

You're welcome to add me as a friend, my diary is open, don't always enter as I'm in maintenance now but I'm honest with it.

GaleHawkins

jrbb03092 wrote: »

I have fibromyalgia, arthritis and chronic migraines.

I seem to do well when I'm just dealing with my baseline of every day pain but the moment I hit a flare or more than a day of migraines (I can have 4-5 days at my worst), I default to old behaviours.

I find it hard to get out to walk when it takes all my energy just to get out of bed and take a shower and I find it hard to eat well when my brain's barely online enough to say "no, comfort foods aren't going to make things any better".

I'm assuming there are others here dealing with the same kinds of issues. Do you have any tips or tricks or anything that helps you push through those times?

I am lucky enough to be a stay at home mum and I can adjust my schedule as needed (daughter is older) so mentally I'm in a good place (there's no guilt or anxiety associated with my being ill).

And I feel like, aside from migraine attacks and fibro flares, my head is in a good place and I /really/ want to succeed this time. But when those two things hit, it's like my brain and body shut down and I'm just operating on auto-pilot until they clear. Help?

@jrbb03092 I can not tell you what may work for you but will share what I did that knocked my joint and muscle pain level of 7-8 to 2-3 in just 30 days about 20 months ago and still is working today with many positive side effects.

I have Ankylosing Spondylitis (1976 first labeled). Aug 2014 I was told to start Enbrel injections Nov 2014. I was not liking what I was reading plus my wife did not want me on Enbrel. In the back of my mind I thought if I would just cut out sugar and all grains I would hurt less. After not being able to taper off due to cravings I finally just went off both cold turkey first of Oct 2014. The first two weeks were hellish then all cravings went to Zero and stayed that way.

Only 30 days later the pain was well managed Rx meds free. 6 months later my 40 years of life defining IBS fully resolved and has not returned. My weight was not a direct concern but drifted down from 250 to 200 and has remained there for the last year without dieting. My blood work is better at 65 than it was at 45.

With AS the bacteria Klebsiella pneumoniae is often the trigger. It is good a breaking down carbs passing through the gut so I may have starved it so it was more in balance with the good microbes. I read most autoimmune diseases stem from gut microbe balance.

Keep trying and I expect you find a route back to full health. Best of success.

jrbb03092

Thanks everyone for your suggestions and advice. I do a lot of meal planning and have lots of coping mechanisms (appliances, short-cuts) for how to cook when my hands are hurting more than usual, etc.

For some reason I've been (blame it on the brain fog) not clueing into the idea that I need to do the same for my weight loss/moving more. Plan ahead for those days and come up with ways to deal with specific problems/pains/flares. Will think on that.

Jkowals123

I heard the supplement NAC is good for migraines!

danimoore08

Hiya, i have fibro as well and migraines. Lyrica keeps the pain mostly around a 4, but stress or b overdoing it causes intense flares spiking the pain to the point i can barely move.....i have been tested for diet triggers and have none. I have seen a nutritionist and done elimiation diets nothing helped.

That said i have almost completely stopped flareups (except from major unexpected stressors) by.... making my own smoothies in the morning using a frozen fruit mix from walmart, yogurt, kale and some orange juice. Pineapple contains an anti inflammatory thats been found to reduce fibro pain. That sets my day off right and clears my fibro fog!!!!

The second key.....is move! And move hard! When i workout hard i feel so much relief afterwards!!!! Its true that getting theu the workouts at times makes me cry from the pain, but to know that relief is coming makes it worth it. I highly suggest piyo, and zumba. I spent a lot of time packing on the weight cuz it just hurt too bad to move, i went to soooo many docs but nothing really helped. So i just thought about how good i used to feel (3 kids ago, four stomach surgeries, a bout with ovarian cancer, and forced medical menopause, all before my 30th birthday) and i remembered how active i was with sports and other intense physical activities and i decided to give intense exercise a try.

So far the intense workouts coupled with a few small diet tweaks its been great!. So nice to live without as many flareups and fog! Give it a try. Not gonna lie the working out can be excruciating but the relief afterwards is incredible!
try

gentlygently

I certainly relate to the plan ahead (CFS, lots of brain fog) advice - I try to buy in a range of food. I do a huge online shop every 2 months or so and get a veggie box that ranges from 'good meat to cook properly' to 'point and shoot' cooking for when I feel ill. If I do feel ill and crave comfort food, I give myself some it - but keep the portion size reasonably sensible. So I don't feel guilty, and hence get into the 'oh well th hell I'll have the rest of the packet' thinking. I just say these are not day for losing on. I don't try to lose fast - I have too much else to cope with.

Alternative sources of comfort - longer rests, long bath, downloading a movie, texting friends to arrange to meet up (when perky), have a good winge on MFP, getting a massage, meditation tapes, healthier comforting foods (greek yoghurt, fruit loaf) - could all help when you need to show a bit of love to yourself? Perhaps put a list on the fridge to remind yourself - or on the cupboard with the junk food?

I know it is hard - especially when your body hurts - but Excercise really is a top priority to being/feeling better... Good luck