Fibromyalgia and Chronic Pain

[ZakareyasMama]

I don't know if this is the right place to start this thread. Please let me know if I should move it.

I wanted to start a support thread for anyone who has fibro. I have been feeling great since DS was born (horrid during pregnancy) but I have had a bad day today. I know the flare up won't last forever, but it's just hard to imagine feeling better. I worry that I won't be able to keep up with DS when he's older and more active. Will a toddler understand "Mommy hurts today"? I am so happy to have great support from DH... I really couldn't do it without him! 

Anyway... just wondered if anyone else out there is dealing with fibro/chronic fatigue and whatever else we have. 

What are some ways you have gotten help?

I've used Vitamin D and acupuncture. I was also on meds but stopped as soon as I found out I was pregnant a year ago.

[K1329]

I've been looking for a "chronic health condition" tribe, for awhile now, in MDC tribal areas. Thanks for posting this! Maybe you could start a more general thread for those of us with chronic conditions?

I have a chronic pain condition and, similar to fibro, I'm sure, I don't know how I'll feel on any given day. :( I take meds, and, without them, couldn't function - been down that road and now know that meds are an important part of me being a functioning adult.

Dd is 7 and ds is 4. My problems started after ds was born. I'm happy to say that I have supportive dh, too, and agree that without his help parenting would be a lot more difficult. I do find that my kids understand, and that they don't resent, "mommy doesn't feel good today"  - to a point, anyway! They still want what they want, and, want it now! lol

The hardest is when one of my los has a scheduled event and I'm having a "bad" day. I usually just force myself to go - not easy, or even possible some days, and I know that I'll have a little "payback" (pain increase) after the event - but, it's really important to me that my kids not miss out any more than they have to over my condition.

Parenting with a chronic condition is not an easy road to travel.

I haven't tried acupuncture, although it's been recommended to me. Have you had any success with it? Have you found any other online support for parenting with a chronic condition? Forums, guides, etc?

[blessedwithboys]

I've had fibro symptoms since about age 20-21 but wasn't dx until I was in my late 20's.  So dealing with it fro almost a decade and a half.  The only thing that completely ameliorates my symptoms is Elavil.  Lo-carb eating helps some, and I try to do a Master Cleanse 3-4 times a year.  I haven't been on meds since Jan '10 since I lost my job, but I'm working on getting in with a clinic soon.

[ZakareyasMama]

K1329-  That's a good idea... should I just change the name of this thread? To what? "Moms with chronic pain"? Acupuncture does help me. I think I will try to get some done this week. It can be expensive and my insurance doesn't cover it. But it really helps with stress and sleep (those are my 2 major stressors that can cause a flare up) but be careful. If you do acupuncture make sure your provider is familiar with your chronic pain. I did it once before and it hurt before it helped (it DID still help though). The woman I go to now uses a technique with smaller needles and light insertion. It helps but doesn't overwhelm my system. I have looked for Fibro and Chronic Fatigue support websites, but a lot of them end up being a little negative. I realize people want to vent, but I'm more interested in talking about solutions... you know?

blessedwithboys- I have had a similar experience with fibro. I spent a lot of time going back and forth to different doctors trying to figure out what was wrong. It was a physical therapist who suggested it could be fibro. I have read some about diet changes helping fibro. It seems like it's mostly trial and error?

Also, what about how hormones affect our symptoms? I had been feeling so great since I gave birth like 12 weeks ago. I wonder if this flare up is a sign my hormones are sort of going back to normal.

[earthmama369]

I'm happy to see this thread here. I was just thinking about starting one tonight. My dd asked me if I wanted to go on a Mother's Day hike and I would LOVE to, but I can't and was bummed to have to say no.

I've had some fibro symptoms for a couple decades now, but the full-on onset was 3.5 years ago and I was finally diagnosed last summer. I'm on a handful of meds and have pretty limited mobility and stamina. Apparently I fall on the severe end of the spectrum and I'm not responding to meds very well. It's had a big impact on our family. I'm not working and we decided to put the kids in school a few months ago (I was homeschooling before then). I had to stop exercising for over six months in this most recent flare and am just starting back up with water therapy once or twice as week, as I can. I used to be able to bike 100 miles in a day! It's pretty crazy making, but the kids are happy in the programs they're in, dh has been absolutely awesome through all of this, I've got some rockin' canes and a recently rescued tortoise to hang out with during the day, and a 15-year-old cat who is beyond thrilled with the amount of laptime I can give him. I'm learning -- slowly -- about this thing called stress and how bad that is, and this thing called relaxing that I've never been very good at. I wouldn't have picked this for myself if I had the choice, but I'm blessed with the family and friends I have around me and I feel strong on the inside even if I want to trade my outsides (and some of my insides) for bionic parts most days.

[ZakareyasMama]

Wow 100 miles! That's amazing! How long do you find your flares last? What all have you tried to help manage them? I want to HS my kids, but I'm worried I won't be able to. I used to be a teacher but I had to quit bc of the stress. I know what you mean about having to re-learn how much you can do. I think for me that going through it before I had DS helped me not to get overwhelmed about housework etc etc bc I was already over it haha. For me it's hard to find a balance between resting too much so that I feel depressed and sluggish and pushing myself too hard so that I get knocked out. Does that make sense? Any advice?

Oh and gentle  to all

[LionessMom]

i have fibro and so does my mom. after finally seeing the right doctor i have been diagnosed with ehlers-danlos type 3. my kids have it as well. the doc told me that most of the people who come to her with fibro developed it bc of EDS. it is worth looking into.

[K1329]

I definitely notice reduced functioning and difficulties with work/housework mentioned. After 2.5 years of this, I still struggle with how to get cooking, housework done. I've had to lower my standards and accept that my house will not be as clean and organized as it was. I'm trying to budget in a housekeeper, but, haven't been able to yet. When I do cook, I try to make double batches and freeze a serving. Do you have any tricks you use to keep your household going?

[dairy2dogs]

The ped my dd saw today thinks she may have fibro.  He is referring her to a rhuematologist to rule out anything else.  I think I may have it too but I'm doing well right now.  A year ago I couldn't go to the grocery store without having to come home and lay down the rest of the day.  We are homeschooling this year with an online school (so its less work for me) and I think it has helped us both tremendously.  I think the stress of dealing with the public school was making us sicker.  I just talked to my bff about dd and she said she had fibro symptoms but they went away when she stopped eating dairy.  Anyone else find that to be true-you improve with eliminating dairy? Also does anyone have a good source of information about fibromyalgia?  I should do some more research.  I'm interested in both alternative and convential veiwpoints on it.  Thanks.

[ZakareyasMama]

@dairy2dogs I've never heard of a child being diagnosed w fibro. That's great though if it means she won't have to go through years of not knowing what's wrong and wasting money on unhelpful doctors (sorry, I know they're not all unhelpful, it's just most of the ones I've seen were!). Fibro is usually diagnosed by checking to see if the patient has specific tender spots on the body. The pain and soreness in my experience radiate from these spots and are similar on both sides of the body.

When I have flare ups the pain is worse and I have extreme fatigue (like your grocery store example). One thing my doctor did was to check my vitamin D level. Apparently it was super-low so now I take like 4000 ius a day. I would say it probably helps but doesn't completely prevent flare ups. My main triggers are sleeplessness and stress. However, I've been under the least amount of stress in years and I get great sleep (I have a miracle of a 3 mo old!) so I can't really point to either of those as the cause of my most recent flare up. Thinking about it now, it could be low vitamin D. I ran out and it took me several weeks to get more. Hmmm...

If you google stuff on fibro there is a lot of information. Unfortunately, a lot of it I've found is sketchy, sometimes strongly drug-based, and sort of negative. I mean I know it's a pain (haha) to have fibro, but we aren't dying from it or anything. It could be so much worse! Let us know if you find anything good.

I've seen mentions of diet changes. I have never tried cutting out dairy. I guess I love cheese too much. Acupuncture has helped me the most. I also tried a drug and it did make me feel pretty good--not 100% pain-free though--but I was only on it for about a month when I found out I was pregnant and then I stopped. There are several drugs on the market. The one I was on was an off-label use for an anti-depressant. 

Let us know how your DD is doing!

@Lioness Mom- I've never heard of EDS but I googled it. Did the addition of the EDS diagnosis change the treatment for fibro? I am interested to know if I have it, but I hate the way doctors look at you when you say you think you have something... I am worried about my kids having it. When did you realize yours did?

@K1329- Oh housework is such a pain sometimes! I am very blessed to have a DH who doesn't mind helping out. I try to cook like you said and then freeze stuff. That's the best way, but I can't always get it together. I struggle with wanting to prepare fresh food instead of prepackaged stuff. I also struggle to do laundry. I usually wash one day and then sort and fold on a different day. I find sorting it helps the job seem more manageable since it's a lot of little piles that can be tackled a little at a time. I pour out all of the clean clothes onto a rug in the second bedroom and if it's not folded for several days we just rifle through it for what we need. I think for me I have had to lower my expectations for myself (be realistic about what I can do) and also be very organized and not keep too much stuff (more stuff to keep clean) Oh and take breaks BEFORE you feel tired. That will keep you from crashing later. Any other ideas??

[subtlycrunchy]

Hugs to you, mama! Have you ever practiced tai chi? I remember reading a very encouraging study last year that found women who practiced tai chi as part of a 6-week program reported a dramatic reduction in symptoms. Can't find the link just this minute, but I know it was out of Tufts University. Here's a great article on fibromylagia pain with LOTS of tips for how to take a natural approach: 

Treating fibromyalgia naturally

[BenimBebek]

Wow, I cant believe it took until now for this thread to exist!!!  Great idea!!!

My mother has had fibro for the last decade.  And I have had a few sore points since near her diagnosis (I was about 16).  The weirdest thing about mine is that it goes away when Im pregnant and for about a year post-partum, but when it comes back, sometimes I cannot even hold a phone up to my ear because my elbow will hurt so badly after just a minute.  Sometimes I dont even realize how much pain Im in until I snap out of it and notice Im hunched over my grocery cart like and 80 year old woman.  My Primary Care thinks that its low adrenal function and that my pregnancy hormones kick it up a notch and my symptoms disappear.  Once I stop breastfeeding my LO Im going to go back in and start and whole program of detox, rebuilding my gut (i wasnt bf'd and have tons of food sensitivities), and do a bunch of adrenal boosting thing... and hopefully I wont end up like my poor mom, basically high all day and half the time forgetting what people say to me, falling asleep mid-sentence :(  As much as I love her, it is really hard to have a mom like that.  You get forgotten a school more times then you'd like to admit.  And my friends would always joke about how my mom always seemed like she was high :(  I really dont want to do that to my babies.

[LionessMom]

Originally Posted by ZakareyasMama 

@Lioness Mom- I've never heard of EDS but I googled it. Did the addition of the EDS diagnosis change the treatment for fibro? I am interested to know if I have it, but I hate the way doctors look at you when you say you think you have something... I am worried about my kids having it. When did you realize yours did?

DD1 started looking too thin and her belly looked bloated and she was unhappy and aggressive. so i started by taking her to the gi doc. no answers. i knew something was wrong. she had too little energy for a 3yr old and no muscle or subcutaneos fat. my 15 yo son started having chest pains and they couldnt figure out why. invisible right? took blood and found no signs of immflamation or infection or anything. so i kept pressing. then bc i was asking the gi about not being abe to drink milk without throwing up and him giving me tests i found out i was frucotse intolerant. so i got my kids tested bc they are just like me. and they all are intolerant too. so i said it has to be genetic and made a genetic appt. told the geneticist about my fibro, our digestive stuff, my prolapse, my sons chest pain, my moms fibro etc. she had me do some tests and told me it was eds type 3. so all my kids will feel like they have fibro from a young age. my son has fatigue and everything already. he might file for disability before he is 18 :( my oldest bio dd looks mostly ok except the stomach stuff and my youngest dd has the bad teeth. so it was really roundabout bc it all started with me wanting to know why my daighter looked like a skeleton. i was told that the fructose malabsorption syndrome and other intolerances are common with eds. the diet is thhe same as what is recc'ed for most fibro patients... no sugar, no wheat, no chemicals, no artificial stuff. we also cant eat fruit and most veggies. we eat a lot of meat potatoes and rice. the veggies are a condiment.

no better treatment. it is progressive and uncurable. they recc doubling your vitamin intake, b12 ets and adding extra c to help with the bruising aspect. you have to get up and do something every day no matter what. if you want to keep it, you have to use it. one day of not moving will put you farther down and make it even harder to get back up. they recc water exercise mostly. like the spoon theory of only having so many spoons... only you have to use your spoons every day, you can not save them for later.

[ZakareyasMama]

@subtlycrunchy No I've never tried it but I can totally see how it would be good. Every time I try to "work out" I get totally knocked out (even water stuff) but tai chi seems do-able!

@benimbebek I know what you mean about wanting to be there for your kids. I think we just have to take care of ourselves and make our kids priority (over house chores and stuff if we need to). I am hoping that I will be instilling patience and empathy at a young age w my kids.

@LionessMom Wow so many doctors and tests! It must have been hard to keep going. I guess it must be the mother's intuition that told you something was wrong. Is there anything else you do besides diet restrictions. I have thought about changing my diet... but I really don't like meat and that's a lot of what I've read about.

I'm wondering... have any of you noticed a change in pain/symptoms during different times of year? Like for me I feel worse in cold weather usually, but not nec better in heat.

[BenimBebek]

definitely worse in the winter. with flare ups year round!

[mom2threenurslings]

I don't have fibro (some days I wish I did!) but do have chronic pain due to severe psoriatic arthritis (PsA). My most recent flare started in mid-February and I've gone downhill quickly since then. From spending all day on my feet chasing after my 5 homeschooled children and the 2 I babysit (a typical day would have us at homeschool co-op from 9:30AM -3PM, then running 2-3 errands and playing outside, then cooking, cleaning, etc. ... or spending the morning at the museum, lunch and shopping at Ikea and a stop at the park on the way home followed by housework, etc) to struggling to make it to both the thrift store and the grocery store in one trip - without kids. I have severely limited range of motion and significant damage in my ankles,and pain in my feet, hands, neck and lower back.  My canes arrived today. If my liver bloodwork comes back normal this time around (it was slightly abnormal earlier this month), I'll be going on methotrexate (a chemotherapy drug, but at lower levels than used for chemo) to slow down the PsA. At the moment the only thing I'm on besides my thyroid medication is tramadol for pain. 

I've found it difficult to find a "tribe" who understands what it's like to have to deal with chronic pain and limited mobility, but this thread is definitely a good start! :) 

[ZakareyasMama]

Yes one thing I always tell myself when I'm in a bad flare-up is that it's just my body playing tricks on my brain. I don't have any actual damage being done. I'm sorry to hear that you've had such an extreme flare-up. Is there a lot of research about PsA? Have you tried any alternative medicine like acupuncture or massage? Is PsA the kind of thing that gets better with exercise? (I feel like my fibro gets worse with too much exercise, but you know that's what *they* always tell you to do!)

Are you still homeschooling? I would really like to HS my kids but I am worried that I won't be able to do it physically.

As far as housework and errands... have you given yourself permission to let things go? That was/is still hard for me. I get into moods where I want to re organize the whole house, clean the baseboards, and start 15 new craft projects. I quickly get overwhelmed and crash. Since I was pregnant and in a lot of pain, I've tried to really be realistic with myself about what I can get done. I clean/tidy one room of the house each day (I have 7 rooms) and if I feel horrible maybe that just means changing the towels when it's "bathroom day." But I've found that even just doing a little at a time is better than letting it build up and get overwhelming. 

I hope the new drugs will be helpful! I'm glad other people have found this thread, even though I wish none of you needed it...

[mom2threenurslings]

Yes, we are still homeschooling. My kids are 12, 10, 8, 5 and 3 ... the kids I babysit are 3 and 1. I'm very thankful that the big kids are a huge help with the little kids when needed and everyone in my household is required to contribute to the household duties, and I'm really good a delegating! ;) The way it works in our house is that each child is "captain" of a room for the week, and they're in charge of cleaning that room (to their age-appropriate ability). For example, the "kitchen captain" fills and empties the dishwasher, hand washes dishes, and cooks at least one meal during the week ... the dining room captain makes sure everyone clears the table after each meal, washes the table after meals, and sweeps the floor as needed.  Unfortunately, I'm the only one who runs errands, so that's all on me. I can pace myself - my dh doesn't leave for work until 11AM or so, so it gives me time in the morning to run an errand or two child-free ... and the mom of one of the kids I babysit works at Whole Foods, so once a week or so she bring groceries with her when she drops off her dd.

In addition to the PsA (there's not a ton of info out there about it),  I also have hypothyroidism and my endocrinologist is sure there's a problem with my cortisol levels, so I most likely have adrenal issues as well. 

Movement helps in some ways, but hurts in others. Since my joint damage is getting worse untreated, it's bad, but in order to keep some range of motion, some sort of exercise is necessary. It's difficult to find a balance. 

[ZakareyasMama]

Oh wow I love your captain system! I used to teach elementary school so yeah I learned to delegate all the classroom work! Right now LO can't really do anything but make me smile  I feel so lucky that he's a really easy baby. Have you tried water therapy? My MIL has bad arthritis (just the regular kind) and the warm water helps her. She goes to a class where they do different types of stretches and stuff. I've actually gone to the class with her a couple of times (she lives in a different city).

[LionessMom]

Originally Posted by ZakareyasMama 

@LionessMom Wow so many doctors and tests! It must have been hard to keep going. I guess it must be the mother's intuition that told you something was wrong. Is there anything else you do besides diet restrictions. I have thought about changing my diet... but I really don't like meat and that's a lot of what I've read about.

I'm wondering... have any of you noticed a change in pain/symptoms during different times of year? Like for me I feel worse in cold weather usually, but not nec better in heat.

just diet. we now know we also have pots. postural orthostatic tachycardia syndrome. we are suppoed to eat more salt and drink more water. and add more magnesium and potassium. so we eat a lot of salty fried taters! yummm. and it is ordered by the doc. lol. french fries fried in olive oil. i love it. and we eat alot of meat. mostly chicken. and fish. we have fructose malabsorption syndrome so we dont eat fruit and most veggies. you have to decide for yourself what you can and cant eat. we stick to homemade stuff that doesnt have sucrose or fructose in it.

we exercise at least 2 times a week. i swim and my son does tae kwon do. we avoid really hot humid situations. we a rest alot too. the hotness makes us dizzy but the cold makes us hurt down to our bones.