| Author |
 Topic Search  Topic Options
|
RachFizz 
Senior Member
Joined: 20 August 2009
Location: Lower Hutt
Points: 2203
|
 Post Options
 Thanks(0)
 Quote  Reply
 Topic: Fibromyalgia/ME
Posted: 27 October 2010 at 2:29am |
Hi, just wanted to start a thread to see how many of us there are out there..
Don't know if one already exists or the best place to put it but hey this is a start.
Just up in the middle of the night again with pain in my arms and legs, worrying about the future as you do.
I'm not yet having children but hoping to someday soon, however I'm struggling as it is so it's seeming like an impossible dream.
Anyway, just hoping to hear of your experiences with medications etc., ways to cope, what it's like to be a parent suffering from fibromyalgia or chronic fatigue syndrome... thanks!
|
|
TTC#1 since Apr11
On hold for study!
|
 |
|
Sponsored Links
|
|
|
mummy_becks
Senior Member
Joined: 01 January 1900
Points: 14931
|
Post Options
Thanks(0)
Quote Reply
Posted: 27 October 2010 at 1:25pm |
I have had Cronic Fatigue and it was a bi*ch. I had GF on top of it which made it worse. I had 2 children at that time and studying. I was made to give up the study which I did and was able to put the boys into daycare as I couldn't look after them. It almost got to the point were my dr was going to get someone in to do the housework but a few friends came and helped me out. I slept ALOT and people would come over and see me doing nothing cos I couldn't do anything.
my dr got a few things sorted for me, and it took about 6 months but I did get better. I also moved while I had it (a 2 hour drive away) and packing was a hard job.
It did get better I do have the odd relapse so I know what it is now and now I just deal with it.
|
|
I was a puree feeder, forward facing, cot sleeping, pram pushing kind of Mum... and my kids survived!
|
|
Katherine
Newbie
Joined: 01 January 1900
Location: New Zealand
Points: 949
|
Post Options
Thanks(0)
Quote Reply
Posted: 27 October 2010 at 1:33pm |
Hugs, Rachel -- my best friend in the US has fibromyalgia and has suffered from it for the past 15+ years. We lived together for a year after uni and I saw firsthand what she went through; there were nights she'd be up crying from the pain for hours. My heart goes out to you.
Strangely, when she got pregnant, her fibro symptoms lessened significantly. They did return after her baby was born, but reduced again when she got pregnant with her second child. Her second baby is three now and her symptoms have ramped up again. One of the accompanying conditions she has really struggled with is depression.
She had success in reducing her fibro symptoms somewhat with regular massage and chiropractic treatment. She has also taken antidepressants with very mixed results; often the initial side effects have made the fibro symptoms unbearably worse and she hasn't been able to get over that "hump" for the antidepressants to start working. Exercise did seem to help.
I wish there was a cure as it's so debilitating. I hope you have a good support group in place as it can be so isolating. I'm glad you're bringing it here to talk about!
|
|
Bobsta
Senior Member
Joined: 12 October 2009
Location: Melbourne
Points: 3806
|
Post Options
Thanks(0)
Quote Reply
Posted: 27 October 2010 at 6:53pm |
I have chronic fatigue(ME) and my dad has fibromyaligia. It also affects others in my family but me and dad the worst.
I do worry about passing it on to my kids. Yeah it does suck as I really have spent the last 10 years constantly having to accommodate it. I have learnt my limits by every now and then push it too far.
I got so sick when I first got pregnant, and then later when I lost it I really had to face it all again as it's a high probablity having CFS/ME was the indirect cause. I strongly suspect my hormones were all out of whack and then my thyroid and adrenal glands stopped doing what they should as the pregnancy put tremendous stress on my body.
I have done a lot of research into these things and made some life changes so next time around I am giving myself the best possible chance.
One thing I want to say to you is that it's not an impossible dream!! You might just have to be more cautious and aware of things. I'm still in the TTC stage now (for my first baby) so no advice for the afterwards bit.
I am seeing a naturopath that has ME herself and went through struggles with pregnancy. She did say if you get yourself into tip top health as much as possible when you first get pregnant, it will make the pregnancy and especially afterwards, much easier on you.
I'm always keen to chat to people that have to live with these problems so feel free to PM me anytime! 
|
Me 34 Him 35 DD almost 2 years old and... Baby #2 on it's way!
|
|
fire_engine
Senior Member
Joined: 03 November 2007
Points: 6260
|
Post Options
Thanks(0)
Quote Reply
Posted: 27 October 2010 at 7:33pm |
|
Depending on what dr you ask, I have chronic pain syndrome/fibromyalgia .... Mostly arms and back.
I am normally on amitriptylline for pain management and find it's really good. In PG, my pain is usually better. I was off my meds for the first 2 trimesters with both PGs but went back on it for the 3rd trimester, more for sleep than for pain. My pain in PG has been fairly normal PG pain rather than CPS/FM pain, if I compare it to my non-CPS/FM friends.
For me, the best things have been seeing a pain specialist. I'm lucky that Auckland has an awesome pain service. I only went once but it helped me change my mindset about it. I am a LOT more aware of my pain triggers and am much more proactive about managing it. I know, and my DH knows when I'm winding up to a pain flare. I haven't had a flare for about 3 years now and I've had 2 PG in that time, dealt with a toddler and balanced work and study.
Are you on any meds? I think if you're going into parenthood, it's worth doing some thinking about your triggers and possible management plans (esp given the fatigue issues you have) - bit like a birth plan but more of a postnatal plan! Look at triggers, supports, things that help you come down from a flare (if you have them). If you haven't seen a specialist, see if there are any you can see if you're feeling the pain is not being well managed. Look at what's important in your life and make sure you prioritise the things you enjoy not just the things you have to do. This is really important for anyone, not just those with CPS/FM. Keep doing little and often ....
|
|
Mum to two wee boys
|
|
Shelt
Senior Member
Joined: 17 May 2008
Location: Tauranga
Points: 1181
|
Post Options
Thanks(0)
Quote Reply
Posted: 27 October 2010 at 9:16pm |
|
I also have had CFS/ME - thankfully now I am pretty much symptom free except when I get rundown/sick. I got it when I was 17 and it took me the best part of about 6 years to feel mostly better. I didn't function for about 6 months but gradually things got better - usually one step forward two steps back but I got there in the end.
It didn't affect me too much in pregnancy thankfully but I did have patches that were not great. I do wonder if its the reason that DD was prem and why she has had so many health issues for no apparent reason. Hopefully I haven't passed it on to her.
I managed mine when it was really bad with a combination of herbal and mineral remedies. I was deficient in practically everything (or so the tests said anyway) and I found magnesium helped more than some of the other things. I also at various times took aloe vera juice and probiotics (I still take the inner health plus stuff). I made myself exercise too even though it seemed to make things worse initially. It was horrible when I was too tired to hold my arms up to eat trying to walk down the road but I gradually got stronger which helped I think. Certainly helped mentally to get out of the house.
I have a friend with CFS who is not as recovered as me and she has two kids - a 3 year old and a 5 month old. She has found things hard but is still able to cope with the help of her husband. It is do-able to deal with kids when you have CFS as long as you have support and can get some rest.
|
|
|
|
DJ
Senior Member
Joined: 11 March 2007
Location: Wellington
Points: 3153
|
Post Options
Thanks(0)
Quote Reply
Posted: 28 October 2010 at 8:06am |
|
My mother suffers from fibromyalgia and it sucks.
Another girl I know also has it, and was able to go on a course here:http://www.qehealth.co.nz/home/home.htm
which she found helped her deal with the symptoms better. She was able to go for free after a referral from her specialist. She is now doing really well.
all the best for you xxxx
Edited by DJ
|
|
|
|
first
Senior Member
Joined: 17 January 2008
Location: Auckland
Points: 1357
|
Post Options
Thanks(0)
Quote Reply
Posted: 28 October 2010 at 9:22am |
|
Yes CFS here and Fibro too and it is difficult with kids but not impossible.
While pregnant and BFing I found my symptoms hugely better apart from the first 17 weeks of pregnancy where I was exhuasted and pretty much didn't have the energy to stand up. Other than that have been fine.
|
|
|
|
sunnyhoney
Senior Member
Joined: 06 February 2007
Location: Mt Roskill
Points: 1824
|
Post Options
Thanks(0)
Quote Reply
Posted: 28 October 2010 at 11:53am |
|
Yep I have a CFS diagnosis too. I've had it since I was late teens, but only diagnosed in early twenties. The only time I have felt totally healthy was after a blood transfusion. Unfortunately it didn't last very long.
How do I get through...sheer will power to keep going. Probably why I have never really been better.
I also suffer from depression so some days are really hard. But I'm lucky to have an understanding & caring DH. And I hope one day my kids will understand too.
|
|
Mum to:
Joy Emily 1.05am 27/09/07 7lb 3oz
Austin Paul 12.47pm 18/04/10 10lb 8oz
|
|
RachFizz
Senior Member
Joined: 20 August 2009
Location: Lower Hutt
Points: 2203
|
Post Options
Thanks(0)
Quote Reply
Posted: 28 October 2010 at 2:17pm |
Thanks everyone for the replies so far. It's nice to hear from other people out there. Had tried looking for forums before but couldn't find anything from nz, and the people on this site are awesome
Thanks for that site suggestion DJ i'll check it out after I've typed this.
I had epstein-barr in 2006 and have never really felt 100% since then. I was having to take afternoon naps all through first year of uni. Had a TSH test done which came back abnormal, but wasn't diagnosed with hypothyroidism til 2nd year coz they didnt let me know about the abnormality the first time! Since then it's been a matter of getting on the right dosage of thyroxine. Thought things would be getting back to normal, but then I got CMV late 2009, and after that I was having really bad abdo pain and bloating. Dr thought it was IBS. THEN at the start of this year I was still feeling constantly run down and started to get aches in my back, shoulders, and chest. Then it started affecting arms and legs. Then ofcourse the rest of the random symptoms followed (headaches, brain fog, etc.)
Dr put it down to fibromyalgia and it seemed spot on with everything I'd read about it. Haven't yet been to see a spec, because Dr told me they'd just put me on the same meds and wouldn't really provide much more information. Plus either the waiting list or the cost to contend with.
Now though, I'm thinking I shouldn't have listened to him. Think I will get on that waiting list. The meds I'm on (amitryp) work pretty well for me, I forget that there's anything wrong with me when I'm taking them, so that's lucky. My only worry is what things will be like when I stop them to TTC. Having that plan seems like a really good idea, will hafta get on to that. Maybe will have to put off TTC again til I've got a new job and can see how I'm managing it. Having only been diagnosed for about 6 months I'm still trying to work out routines, etc. that will help me keep on top of my symptoms.
|
|
TTC#1 since Apr11
On hold for study!
|
|
fire_engine
Senior Member
Joined: 03 November 2007
Points: 6260
|
Post Options
Thanks(0)
Quote Reply
Posted: 28 October 2010 at 3:05pm |
|
And talk to your GP about staying on amitrip when PG. You may well be able to stay on it, even just at a lower dose. There is no evidence that amitrip is linked to birth defects, even in high doses (800mg +). Even if you did come off it, it's only for the first trimester.
|
|
Mum to two wee boys
|
|
RachFizz
Senior Member
Joined: 20 August 2009
Location: Lower Hutt
Points: 2203
|
Post Options
Thanks(0)
Quote Reply
Posted: 28 October 2010 at 5:27pm |
Wow that is good to know, will be seeing him soon so will bring these things up
|
|
TTC#1 since Apr11
On hold for study!
|
|
Bobsta
Senior Member
Joined: 12 October 2009
Location: Melbourne
Points: 3806
|
Post Options
Thanks(0)
Quote Reply
Posted: 28 October 2010 at 8:01pm |
|
I have to say it's so nice to have this thread, thank you for starting it Rach. It's a relief to know there are other people around that deal with this. It's always been a big fear of mine about how I will cope with having children,though I've never voiced that concern to anyone until now. Sometimes I wonder if I'm nuts to have kids. If some days I can't get out of bed to go to work, why do I think I can cope with raising kids? Do I expect I'll magically get more energy? But I guess you just adapt.
I was told once that some people with CFS often find after pregnancy they don't have as many problems. It's something to do with the hormones balancing out. I hope that's true anyway!
I'm sure you have all tried all sorts to manage things but I definitely find I do better on a super healthy diet. I find that processed foods really affect me much more than the normal person. I also cut out dairy as it aggravates IBS problems. Gentle regular exercise like walking really helps, although it's bloody hard to do it all the time.
I agree that you need a good balance of supplements, but it's also easy to get carried away and think they are "the cure".
I do regular de-toxing, the liver cleansing diet is fabulous but I've only done it properly once for the full 8 weeks. I created my own "lite" version of it, lol.
So how did it all start for me? Well I first got my diagnosis at age 20 (I'm 30 now) but we can trace the first "proper" symptoms showing from 15/16 years old. My early twenties were hell. Mid twenties much better and by late twenties pretty darn good. It was only after my mc in May that all the CFS symptoms came out full on again which then forced me to make some proper life changes which I had managed to avoid up until then.
I've suffered from depression & anxiety attacks, but have managed to stay away from anti-depressants. Although almost every doctor has tried to get me on them. I am blessed that as my dad suffers too, I have a very strong support network from him. My husband has been my rock. It's been hard on him too. I think all the husbands and wife's of sufferers deserve a medal!!! I sure am grateful I haven't had to go through it alone. I think I would be a hermit if I did.
I think seeing a naturopath helps, even if it's just to talk to someone that understands the body past a medical book. I had a great GP in Wellington that had heaps of CFS patients. If anyone is interested PM me and I'll give you the name. I think having a GP who understands it is really valuable. A boss who accommodates and understanding it is even more valuable!!!!!
Well this turned into a novel, sorry!!! I guess it's just nice the share with other CFS & Fibro people.
|
Me 34 Him 35 DD almost 2 years old and... Baby #2 on it's way!
|
|
RachFizz
Senior Member
Joined: 20 August 2009
Location: Lower Hutt
Points: 2203
|
Post Options
Thanks(0)
Quote Reply
Posted: 28 October 2010 at 8:47pm |
Don't mind novels I'm a novel-writer myself haha.
I'm sure you'll be a great mum Bobsta. I do feel like that too though sometimes. Hubby is usually really supportive, but once he did say "how do you expect to look after kids if you can't even look after yourself?" that one hurt. But he's getting better. Guess it's hard for other people to understand. He's a fitness freak, currently training for a boxing fight, so by comparison I'm a complete slob! I've had a big rest since leaving work though and am starting to get in more of a routine.. making sure I'm eating right, etc. Yet to get into an exercise routine, but at least it's good weather for walks coming up! Looks like organisation is gonna be key. Analysing what foods, etc. seem to make things worse and finding ways to get around it.
It's a bit scary having never been pregnant before, coz it may be fine, symptoms may not bother me at all, as I've heard happens, but I've also heard that they can be aggravated.. Guess you can't know how it's gonna go til the time comes 
|
|
TTC#1 since Apr11
On hold for study!
|
|
Shelt
Senior Member
Joined: 17 May 2008
Location: Tauranga
Points: 1181
|
Post Options
Thanks(0)
Quote Reply
Posted: 28 October 2010 at 9:22pm |
|
Interesting that your symptoms started with Epstein Barr Rachfizz because that is pretty much how mine started - glandular fever/epstein barr and then the flu. I just couldn't get well again and in fact got worse and worse. I was really bad in my late teens and early twenties but have slowly got better. In fact recovered enough that I did Ironman (3.8km swim, 180km cycle, 42 km run) in March 2008 just before I got pregnant. So there is hope for a pretty much full recovery.
Also, there is a support group in Tauranga for people with CFS and fibro. I have never been as I felt I was reasonably recovered by the time it was set up but I see it regularly advertised, I think its once a month. It might be worth looking to see if there is something in your area for support.
|
|
|
|
RachFizz
Senior Member
Joined: 20 August 2009
Location: Lower Hutt
Points: 2203
|
Post Options
Thanks(0)
Quote Reply
Posted: 29 October 2010 at 2:03pm |
Great to know that you recovered enough to do Ironman, that's amazing!
Starting to feel more optimistic now.
My family (who normally call me a hyperchondriac) told me to do some research on candida infection and how it can affect some people severely. I'm not sure if it's the reason for all my symptoms, but have done a few questionaires that suggest that widespread candida overgrowth and the toxins that it produces, could be the main cause of my problems. I thought only immunocompromised people could suffer from that kind of problem, but apparently it's quite common, and some peole must just be susceptible to it.
It seems like it's not widely accepted by drs though, more of a naturopathic thing maybe. Apparently drs want to prescribe anti-fungal drugs, but the yeasts just build up a tolerance to it. There seems to be loads of information on the net, but a lot of people are just tryna sell you things.
It does make sense though, coz (tmi) but I've not gone 6 months since I was 15 without having vaginal thrush infection, despite my best efforts to maintain hygiene, wear cotton underwear etc. Never reduced the amount of sugar in my diet though because I was spoilt and stubborn. Now I'm making a concerted effort to change my diet little by little incase it is candida that's causing my health problems!
Tis hard to know what to trust these days.
|
|
TTC#1 since Apr11
On hold for study!
|
|
Bobsta
Senior Member
Joined: 12 October 2009
Location: Melbourne
Points: 3806
|
Post Options
Thanks(0)
Quote Reply
Posted: 29 October 2010 at 7:51pm |
|
YES YES YES! Candida overgrowth is definitely something that most people with Fibro/CFS with have problems with from time to time. Anti-fungals are good but start small otherwise the toxins that get released when the candidia starts dying off will make you really sick initially. It's best to get a GP or naturopath to supervise it. There is a drug, I think it's nystatin, that your GP can prescribe you.
If you let candida get out of control it can do some nasty damage on your gut wall and cause a problem called Leaky Gut. I had that and it takes a longer time to heal. If you've had troubles with thrush then that's a good indication you have a candida problem. If you do, you'll need to cut out yeast and reduce sugars for awhile until it gets under control again.
|
Me 34 Him 35 DD almost 2 years old and... Baby #2 on it's way!
|
|
Shelt
Senior Member
Joined: 17 May 2008
Location: Tauranga
Points: 1181
|
Post Options
Thanks(0)
Quote Reply
Posted: 30 October 2010 at 9:37pm |
|
I have heard before about candida infections. One of the naturalpaths I went to see mentioned it and I cut down the sugar in my diet quite majorly. It helped I think, I certainly felt better anyway. I had IBS when I was really bad with CFS and I have always felt that all my symptoms were somehow interlinked, and if I could just get to the bottom of them I would find whatever was causing everything else. This is part of the reason I started taking probiotics and drinking aloe vera juice - to improve the health of my digestive system.
|
|
|
|
RachFizz
Senior Member
Joined: 20 August 2009
Location: Lower Hutt
Points: 2203
|
Post Options
Thanks(0)
Quote Reply
Posted: 02 November 2010 at 4:04pm |
Well I've been on 'threelac' probiotics for the last three weeks. Seemed to have the best reviews online. Have started slowly to hopefully avoid die-off symptoms, although they'd likely be masked by the amitryp. It's hard to tell but I think it has made a difference so far. TMI but whenever I feel like thrush is coming on.. It does. There's no two ways about it and I have to get the fluconazole or those annoying creams n stuff. Then it comes back in another two or three weeks. Well this time, it didn't come, symptoms disappeared and haven't been bothered at all since taking the probiotics! Definitely a good sign.
Bought some Aloe vera today which I'll start tonight. So now I'm on metamucil, threelac, aloe vera, will get some chlorella soon, occasionally take spirulina, echinacea, women's multi and peppermint oil tabs. Getting a lil ridiculous!
Ofcourse when we start TTC i'll have to can the aloe vera, echinacea, spirulina, and chlorella JIC they're not safe. Will hafta check with dr about the probiotics and other stuff.
Will switch from women's multi to pregnancy multi, and look into taking ginger and coconut oil.
Anyone tried any other digestive system treatments, cleanses or anything?
|
|
TTC#1 since Apr11
On hold for study!
|
|
BikeBaby
Senior Member
Joined: 25 January 2011
Points: 109
|
Post Options
Thanks(0)
Quote Reply
Posted: 12 April 2011 at 8:29pm |
|
Yay I found the thread on ME/CFS, thanks for directing me here RachFizz.
I have had ME for about 6yrs now, I got it after a nasty bout of Rotorvirus (so yes I will be immunising my baby against this!)
I am 24 weeks pregnant and would love to get in touch with some other ME mums or mums to be. To be able to speak to someone who understands that yes you can have ME and feel like crap but still be happy in general would be great!
Oh and also RachFizz, I am on amitrip too, I have taken it through 1st and 2nd trimester but am lowering my dose to come off for 3rd trimester as recent research shows concern for baby having withdrawal once born. Some of the withdrawl side effects are pretty scary, like convuslsion, heart palpatation and I can't remember the rest. Got this info from both doc and our friendly local pharmacist. I am going to see doc soon to see if there is anything else I can take that won't effect bub.
|
|
|
|
Fibromyalgia/ME
