Fibromyalgia?

[Phexia]

Is anyone suffering from this? What meds are you taking and do you have any good advice to share?

I had very severe SPD during my pregnancies and it never went away after giving birth, 3 doctors have diagnosed me with fibromyalgia since then. I'm not taking anything now except painkillers since I'm TTC but I'm giving Neurontin (Gabapentin) a try next. Amitryptiline did nothing for the pain, I've changed my diet and that hasn't helped either. I was taking Topamax for migraine and it did wonders for my pain but I had to stop taking it because of side effects

The only thing that helps me is doing NOTHING. I can't clean, I can't walk much, I can hardly bathe my kids, I stopped working a month ago and went to uni again (distance learning) because of the pain. I didn't wanna go on disability, am gonna try extensive physical therapy and some other meds first. But I am concerned about going to work again I loved my job and was really disappointed that I had to quit.

 

[Preggeronie]

I have FM and chronic fatigue syndrome but I don't take any meds for mine since nothing seemed to help. I'm probably a little more tired than your average pregnant woman (and pregnant women are really tired to begin with!) but I'm coping. I can't imagine how you can work and have 2 kids and be pregnant! I'm glad you're taking some time off to take care of yourself.

The only advice I can think of is to take it easy and to prepare meals ahead of time on the days you're feeling good and freeze them. If you can afford it, maybe getting a cleaning service in the house once a week might help take some of the weight off your shoulders.

 

[Phexia]

I've been so much better since I stopped working, although uni is no picnic either. I'm very fortunate to have a helpful and understanding husband. When he's home he takes care of dinner and getting the kids to bed etc. I pay my brother and sister (almost 16 year old twins) to clean for me once a week. What bothers me most is the walking part, like when we travel to other countries I wanna walk around, explore cities and stuff like that but I hardly can.

And the worst part: I can't go to the mall and wander around like I used to, I can only manage a few stores! Pooooor me.

Oh and I'm not pregnant yet, I'm TTC .. will probably have to use crutches and/or a wheelchair when I do get pregnant I'm afraid, but it's worth it

I feel really sorry for you having Chronic fatigue syndrome and being pregnant, you must take many naps Some weeks I'm really really tired because of the FM but I've been pretty energetic lately. I'm hoping someone will find a miracle cure for these diseases in my lifetime.

Do you normally tell ppl you have FM or CFS? I try not to because some ppl don't understand it and think I'm really lazy, which is really not the case

 

[Preggeronie]

i'm the same as you, most people don't understand so I don't bother telling them. most people think i'm just lazy or lack motivation or i'm just being a baby, they don't understand how frustrating it is to feel aches and pains and tiredness that is so bad you can't think straight day in and day out. I was looking at baby names today and I swear it was like i was reading arabic or something... it just looked like jibberish to me. if I tell them they'll usually have some story about someone else who has some disease either the same or "worse" than mine and how well they're doing working and raising 6 kids and volunteering for the UN or whatever which just makes me roll my eyes.

I also have trouble walking. When I'm shopping or out somewhere I'll lean against something or sit down as much as I can, but usually I just have to keep things short. Even if there's no chair I'll sometimes pretend i'm looking at something on a low shelf so I can squat down lol...

I wish I could nap! I'm not a napper even though I've tried very hard to nap lately. One benefit of being preggers though is that I've heard that some people go into some kind of remission while pregnant that may or may not last after the pregnancy. I guess it jump starts whatever is wrong in the body into functioning properly. Now obviously that's not why I got pregnant (it was unplanned hehe) but I'll gladly take that side effect if it happens

good luck if you do end up getting pregnant, how exciting!!

 

[Kacy]

hi guys, i have been suffering from fibromyalgia for 7 years now (which is getting very boring!) 2 & a half years ago i got married & am now going through the motions of reducing my medication in order to get pregnant. i'm just wondering how it affected you guys pain wise during & after pregnancy. My poor popps doesnt want me to get pregnant because he is doesnt want me to be ill again. ive never spoken to anyone with fibromyalgia so any advice or tales will be much appreciated!

 

[Phexia]

Hey Kacy. I wasn't diagnosed until after I had my 2 kids. I think that having kids started my FM because I got SPD really bad. I've heard that some women with FM feel better then they're pregnant, and I've also heard the opposite, so I really couldn't say.

I suppose it depends on where the FM hits you the worst. For me it's the pelvis & neck, not nice when you're pregnant.

Good luck I hope you're one of the lucky ones that get better while pregnant.

Oh, and may I ask what meds you're taking? I haven't found anything that works yet, except painkillers for the worst days.

 

[Kacy]

Hi Phexia, im currently taking gabapentin & amytriptylin. ive never really got on with painkillers they didnt really touch the pain. I have botox trigger point injections every 4 weeks & its been 1 of the best course of treatments ive had! when i do have bad days i have really hot baths (which i guess will have to stop when i get pregnant) & try to relax on an electric blanket. For about 3 years i did have accupuncture which was amazing i think its 1 of those things that either does or doesnt work & in the end it just stopped working my muscles were too tight for the needles & instead of them going in they would just bend! i always tend to try everything once you never know it just might work. dont mean to drone on!

How old r you 2 children? & how have you managed to juggle being a mum & your illness? x

 

[Phexia]

I'm 28. I study at Iceland's Uni full time, 2 kids .. I won't lie, it's hard because of the FM. I do get some extra help at Uni, ppl take notes for me and I don't have to attend all classes. I do think Uni is better than working, I had a 3 month summer job as a journalist and it nearly killed me. I've had a headache since July because of my stiff neck, and it's not going away anytime soon!

I wouldn't be able to do it all if it wasn't for my husband. He does almost all the cleaning and laundry. The house is messy some days, but there's nothing I can do about it, he does his best poor fella. But he takes good care of our family and has been supportive (most of the time hehe .. he gets tired too of course)

I hated the amytriptylin, it made me very tired and did nothing for the pain. My doc is trying to push gabapentin but I'm not sure, most meds just make me feel bad in other ways. It's true that the painkillers hardly do anything for the joint/muscle pain, I take them for the daily headaches so I can work/study

I´ll have to ask my doc about the botox injections, he's never offered to inject my trigger points but I think I really need it. I get really nervous just thinking about going to work after I finish Uni, I don't wan't to be a bad employee, always sick Something has to be done or I´ll end up on disability and I really don't want that to happen.

When I get rich (lol, probably never), I want to try accupuncture and cranial-sacral therapy, plus some other stuff. At the moment I only have physical therapy, but that's expensive enough when you're a student

So, how old are you and your hubby? And did the FM just show up all of the sudden for you seven years ago? AND .. when are you planning on starting to TTC?

 

[Kacy]

i wont lie when im on a high doseage of gabapentin i feel as if im on another planet. 1 thing i do do which i forgot to say was when it is bad i have a good glass of gin & lemon i swear it knocks me right out so i get to sleep through a bit of the pain! when i had the accupuncture my gp did it for me so i never had to pay might be worth asking for.

im 25 and my hubby has just turned 31 weve only known each other properly for a few years (we were married after 10 months of dating!) so he has never seen me really really poorly - god help him when he does! as sad as this sounds i can remember the exact date of when i fell ill & when i finally got a diagnosis other than "your attention seeking - theres nothing wrong with you" but i cant recall ever having a cold or something before i fell ill so i guess i was just meant to be ill. i had to give up a job which i loved & i found it so hard because my future looked so bleak or at least it felt bleak! but i now have my own business - im a mobile hairdresser - & only work a couple of mornings a week. everyone said i would never be able to do it but i did!!!

we're hopping to start trying in a couple of months im so excited cant wait to be a mum.

did fm just flare up during your pregnancy? that must of been quite scary for you!

p.s whats cranial-sacral therapy never heard of it before?

 

[Phexia]

I stole this from a website:

"Cranial sacral therapy is a massage technique where a practitioner uses a featherweight touch to test restrictions of the cranial system. There is a mild cranial rhythm or pulse that can be felt along the cranial sutures. The normal rate is eight to 12 beats per minute. When there is tension or stress at certain points in the body, the membranes are being pulled. Therefore, the body may be out of synchronization, causing ill health."

I know it sounds weird but I've only heard good things about it. My mom's a nurse and she recommends it. It's not like physical therapy, I've heard that it's only like a very gentle touch. Well, can't hurt to try, right?

Anyway, I'm always looking for that magical solution, do you know what I mean? I hope that one day, a brilliant doctor will do a blood test and say "ahh now I see the problem! You only have a blahblah deficiency, I´ll fix you right up." .. probably not gonna happen, I've had every blood test, x-ray, MRI's there is hehe.

I don't drink, so the gin & lemon is not an option But I admit that sometimes I take a strong painkiller before bed so I can get a good rest, it makes a great difference for the next day. Before I had the FM I didn't realize how poorly I sleep. I wake up a 100 times during the night, always checking my watch, trying to find a less painful position etc etc. When my doc asked, I was like "uhmm, come to think of it, I don't sleep so well."

I'm glad to hear you found a line of work that suits you, it's unbelievable how this disease just steals people work-capacity. There is a rehabilitation program here in Iceland for people who are in a lot of pain and have to learn how to live with it. I think I'm going to ask my doctor if I can go there, I think it's a 6 week program and it teaches you all about eating right, exercising, coping with pain etc. From morning to evening you have physical therapy, group classes and lots more. I think I need that sort of thing if I'm gonna be able to work after I finish Uni.

Oh I can imagine you're excited to start making a family It's such a unique journey. I don't think I had FM until after my first baby, or maybe it was sort of underlying before I got pregnant. What I did get with my first baby was pretty sever SPD (Symphysis pubis dysfunction) or just "pelvic pain". I had to quit working early, could barely walk, couldn't sit ... and basically just everything hurt. It was supposed to go away after I had the baby but it didn't. Then I started sleeping bad and I think that was when it changed into full blown FM, I was always tired, always hurting somewhere etc.

With my second baby, the SPD showed up almost instantly and I spent the last 4 months of the pregnancy in bed. I could walk a bit around my apartment and take care of myself, but it was hard. I couldn't walk to the store, hardly play with my daughter etc. Needless to say, the pelvic pain didn't go away after the second baby, my physical therapist even told me that I was worse than some pregnant SPD-ladies she saw, but my second baby was 3 years old then!

So, there are mainly 2 things bothering me. My pelvis, because I can't exercise, walk much or do anything. And then there's the extremely stiff neck and shoulders that cause me daily headaches and neck pain.

Oops, that was sort of a long post .. I'm just so glad I can vent a bit here. I don't have anyone to talk to about this, my husband is really really sick of hearing about my pain all the time. I try not to speak about it because I can see that it irritates him. He's really healthy, never sick, never any pain, so he doesn't understand it fully even though he really tries (sometimes).

 

[Kacy]

hi hon, i know what you mean about being able to have a good moan i too try not to go on too much about pain to my hubby or my parents they get upset because they cant make me better, & i very rarely chat to my friends about it because they just cant understand. i lost a lot of friends when i first fell ill because they didnt understand & didnt want to, i guess it must of been easier for them that way. i remember when i first fell ill my mum got me a wheel chair so i could get out & about & if someone i knew saw me they would cross the road just to avoid me. i mean how rude is that!

your the first person ive spoken to who can fully understand what its like to suffer with fm & its really nice!

my main pain is my neck, back & legs, but i dont think theres any part of my body where ive not had any pain. ive even had it in my ears - very weird! when i go for my injections i have about 8 in my neck & across my shoulders & 8 in my lower back. it hurts but its worth the pain. i had them done yesterday & i already feel a bit better.

i think the rehabilitation program sounds great definately worth a go, if it helps you it would have been well worth it. you never know unless you give it a go!

what is it that your studying at uni & how long have you got left before you finish your course?

 

[oxSarahxo]

Late entry here, Fibro and IBS.

Was diagnosed at age 11 with it after years of fighting with doctors insisting the pain wasn't growing pains or any other rubbish they could come up with. My father has Fibro also, he was diagnosed with it when he was in his 20's I believe.

I think you've all pretty much covered anything that can be said about it, so I'm not gonna moan on and give you the whole "woe is me" speech lol.

It is what it is.

I'm due to turn 20 in October by the way. So just a young un. 37 weeks and 4 days pregnant and honestly don't think my body can take much more. I tell my midwife I'm struggling so badly, I only leave the house to go to hospital, she doesn't seem to understand the meaning of "pain" that ISN'T pregnancy related. Even my OH doesn't understand. I say to him I wish just for half a day he could experience the sheer agony I'm in now just so he could get his head round it and see WHY I'm so frustrated with it.

Its not like you have a bad knee or something, OH says he has a bad knee he knows how it feels, he just doesn't. Its so much more than a bad knee, or sore shoulders or something like that. Its a pain that just doesn't seem to go away now. Its there all day every day.

The hospital told me to take 2 paracetamol, I didn't see the point, I know from the past paracetamol wont even touch it so I'm not gonna waste my time doing so.

 

[Kacy]

hey sarah, congrates on almost becomong a mum. im waiting to get pregnant & was wondering if your symptoms got worse immediately after faling pregnant & which part of the pregnancy has been the most unbearable. i just want to prepare myself for when its my time x

 

[Phexia]

Hey oxSarahxo I must say ... BAD KNEE?!? That's not even close!

I know exactly how you feel, I only left the house to go to the hospital when I was that far along. I cried so hard at my last midwife appointment that she promised I'd be induced, but labor started anyway after the sweep she gave me. I was really depressed at that time, but thankfully not anymore.

Good luck sweety, hang in there. I do know how hard it is, but when you see your baby it will all be worth it. Feel free to vent here as you wish if it makes you feel any better

 

[Kacy]

hey Phexia, hope you are well. Was thinking about you the other day - i know you said you struggled with amytriptylin because of how it made you feel & was wondering when you took it. my specialist always told me to take it at night just as i was going to bed, that way i would sleep through most of the side affects & it would also help me sleep better.

 

[Phexia]

hey Phexia, hope you are well. Was thinking about you the other day - i know you said you struggled with amytriptylin because of how it made you feel & was wondering when you took it. my specialist always told me to take it at night just as i was going to bed, that way i would sleep through most of the side affects & it would also help me sleep better.

Hey I took it at night, my doctored recommended that. I was always drowsy and gained weight (already obese so that was bad), so I stopped taking it. I didn't even get more sleep so I was pretty disappointed.