Chronic Fatigue Syndrome/ME/Fibromyalgia - for support

[Katymac]

Hi all,

I've had a combination of these for a while; I have good days & bad days

The World Health Organisation (WHO) had re-designated CFS/ME as a neurological illness and CFSKate has loads of info about new research going on

I thought we needed a fluffy supportive and lovely thread - join in

NO NEGATIVITY (apart from whinging about how crap you feel or how rotten people we encounter can be or how unfair it is that you have it)

Hi, jetset, and welcome. If you read through this thread, hopefully it will give you some perspective on how your husband feels at times.

My DH also has CFS, and has done well before I did (before we met, in fact, so at least I knew what I was getting into, although he wasn't so symptomatic back then). He's also more ill than I, so you and I may be in somewhat-similiar circumstances. I'm working full time and trying to hold things together, while struggling with my own health. (And I also have a three-year-old. Who also doesn't sleep through the night, argh!)

Are you doctor-ing and doing a PhD at the same time? Sorry, I don't know how that works, do you see patients still, or is your job now research? Either way, that's tough! One thing I'd recommend is to look after yourself -- do you really not have an hour a week or every other week for some counselling? It may make other parts of your life less exhausting. And while your husband is ill, you are going to have feelings that need to be dealt with, and the thing is, you can't expect him to support you there. So you need someone else.

I don't know if you've ever heard of the bulls-eye pattern of support? You imagine the ill person in the bulls-eye, and the circles arround are family, friends, support structures, etc. Everyone should go out for support. So your DH is in the centre and you're the next ring. Your DH needs your support to deal with his illness, but you need support to deal with dealing with it. He's not structured to give that, otherwise the whole thing implodes. So you need to identify who that next ring is. Do you have family or friends you can lean on when things get tough? Or it could be a counsellor.

This doesn't mean your DH takes no responsibility, but there will be things that he can't help and that still bother you that you will need someone to support you through.

Another thing is to identify what your DH can and can't do. I've learned to not feel like my DH was upset with me when he was too tired to speak - his CFS is such that at times he simply cannot form words. I used to feel like he was mad at me because he wouldn't talk, and he felt like I was mad at him for being ill. Once I realised he had no control over it, I was able to realise it wasn't something to do with me, and so was less upset. So things like that - does that make sense?

jetset you are very welcome here, nobody is going to send you to another thread.

I feel for you, it is really hard - in my case I'm the ill party in our house and my dh is currently struggling to cope with having been told it's definitely lifelong. We've been together for 29 years and I've always been ill, but being told definitively by a specialist has changed things for him, I think because before he was constantly in fight/one-foot-in-front-of-the-other/anything to get through mode and now he knows that's definitely not sustainable (although he knew that anyway in his heart). His job is also very demanding and currently getting worse, which isn't helping things.

I have suggested counselling to him, but he wasn't keen, he is however, considering a life-coach, as he sees that as less medical/psychological and more as someone that can help him make sense of the practical mess/chaos and help him come up with a plan.

If you don't have time for counselling, could you perhaps go for the online CBT or even try Relate's phone counselling, which might be more flexible in terms of fitting into your schedule? They don't only counsel couples, they do individuals as well.

Fundamentally and I do know that sounds flippant, but you have to find a way of taking care of yourself, your dh is ill and needs support, but your needs are no less valid and without support yourself, you can't continue to be there for him. My dh finds a night out a month is enough to keep him ticking over. He went out on Friday last week and is a different man this weekend, just from letting loose and destressing a bit. Is there anyone that can babysit and be there to help dh for a couple of hours every couple of weeks or so?

Sorry I can't be more help, but wanted you to know that we do understand, life is just as hard for our spouses/partners as it is for us and often their needs get sidelined as they struggle to keep things running alone. There are definitely two sides to every story and this sort of chronic illness is ridiculously hard on both parties.

I don't think it is 'definitely lifelong' I think that's a very damaging message.

For some people it is, and you have to make yourself ok with that, but it's also recoverable.

I'm a lot better than I was in my 20s.

I didn't say it was for everybody, just that it is for me. I have had it since childhood.

This has just reminded me why I left these threads. Think I was probably made the right decision. Hiding thread now.

You said that's what the specialist said, I wasn't referring to anything you'd said.

I've had it for 27 years, so that's over half my life, but I wouldn't say I have it for life because I don't know, I may beat it yet.

Haven't hidden thread yet, as the phone rang.

Those aren't the specialist's words, they're mine. I am getting on for 50 and have had identifiable symptoms since very early childhood. My mother is about to be 70 and just seeing a specialist about finally getting a diagnosis, having suffered all her life as well.

Getting the diagnosis just confirms for me that, in my case, the particular health issues I have have been and will be life-long. I am hoping the specialist can help ameliorate the worst symptoms and improve my quality of life, but he is not going to miraculously cure me. Between us we will get my life back on track, but I will always have to be aware and live my life in such a way as to prevent future relapses.

This is not something I have a problem with. I made my peace with it years ago. I'm not going to give up fighting, but I'm also not going to live in false hope when I'm fully aware of the facts concerning my own health. It's my husband that has suddenly realised the truth about my condition and he now has to find a way to make his peace with it as well, which is what my post was about.

Virtually every doctor i've spoken to and every article that i've read has referred to fm as a lifelong illness, or occasionally as long-term. Some people may beat these illnesses, and some may find ways of living with with them, but that may of course be because the diagnosis of fm/me/cfs can be a bit of a diagnosis of last resort when nothing else will fit, so sufferers may not have the same condition to begin with, or our bodies simply respond differently to treatment.

I've had a hideous couple of weeks and am not feeling wildly optimistic at the moment, but i do agree with Yseulte inasmuch that we don't know what the future holds. I have certainly had periods where i have been living a fairly normal life, and the illness has been in the background. Unfortunately the wheel always turns and i then have months or years of very limited capabilities. My main hope remains that the nature of our illnesses will be properly understood, and then we can maybe have some effective treatment.

I hope we can have different opinions here without falling out. It helps so much to have the support of people who really empathise, and i've learnt a lot from everyone's posts.

Talking of which, thanks to Moose and Murmur for their posts re partners. It's been on my mind a lot lately as i've been needing a lot of support from my dh, and he is really struggling to meet everyone's needs. I often feel as though he is blaming me for being ill, when really he is just frustrated at the situation. The bullseye analogy was really helpful - i've had a chat with him about that, and he is starting to think about putting another ring of support in place to help him, even if it is just a few evenings of indulging in his geeky hobbies with his mates!

hello - i dont really know what to do.

i have been ill for months with coughs colds, aches and pains and then i had pneumonia and flu over christmas (needed two days in hospital with nebulisers to stabilise my asthma) and its been a long slog getting better. i thought i was doing so well - i was at about 75% and the light at the end of the tunnel was in view.

this weekend i hit rock bottom. i havent had a period for 6 months and i came on last week. i also developed sore swollen glands in my neck and i have pain in some odd places (thumb and shoulder being a couple).my emotions have been all over the place and i just broke down crying on sunday. i am not usually like this - DH says i am the most stable woman he has ever come across (he had a previous partner who suffered from PMT and DH got the brunt of it so he is very empathic).

i recently had an assessment on my hip as i have been diagnosed with arthritis - the doctor pressed points all over my legs and i squealed in pain. she said it looks like i have bursitis in all my joints.

i take co codamol and brufen for my pain but the feeling of total shittyness is really not cool....

my mother and my grandmother both have/had fibro and i wonder if i have the same.

this isnt just a one off weekend.......i have been feeling like this on and off for a couple of years- physically and emotionally. I am not depressed - i have had depression and i am not showing those symptoms. i am emotional and tired and in pain.

DH says i should go back to the GP but i am worried i sound like a hypochondriac

anyone help?

sorry for essay

Hi any room for a not so little 'in?

I was dx with fibro four years ago and last Sept with rheumatoid arthritis.

I know I've had issues with fatigue though since my dad died when I was 8.

Two years ago at the age of 5 DD had two months of having viruses one after the other - she never 'picked up' again afterwards.

I've spent the last 2 years asking doctors why my DD was so exhausted all the time, only to see an immunologist last week who has dx her with JHMS and CFS. A 7 year old with CFS - I'm still trying to get my head around it. She's been referred to UCH for specialist therapies and they've done bloods as there may be an issue with mast cells causing urticaria.

Hi 20th. Definitely worth going to the gp and mentioning your family history - there is some evidence that there may be a genetic link, in some cases at least. The gp will normally want to rule out any other possible causes for your symptoms, so it can be a long road towards getting a diagnosis.

It helps if you can take a list of all of your symptoms, and a record of their frequency and severity, and make sure you get to mention all of the symptoms, or the gp may end up just focussing on one thing rather than the overall picture.

I understand the fear of sounding like a hypochondriac. One of the good things about getting a diagnosis was finally knowing there was one thing wrong, rather than dozens. Even stuff that was originally considered separate to fm has turned out to have a link.

If you have a read back over the thread you will find loads of good advice - it may be worth looking at some of the suggestions for supplementation etc that you could try in the meantime. What sort of help have your mum and gm had?

(Btw, i gave birth to ds to 20th Cenutry Schizoid Man!)

Hi Bishop. Sorry to hear you and your daughter are suffering. There are a couple of posters here who have children with cfs (clarashu and SofiaAmes i think?) - have a look back at their posts. I think they had good results following Dr Myhill's approach - her website is here if you've not come across it yet. I haven't really tried her approach but she has a lot of devotees.

Thanks very much. Will definitely look at Dr Myhill.
I just keep getting such shocked reactions from people when I tell them of her dx - "surely not in such a little one"

I know... but I have known for the past two years that something just wasn't right.

Sorry not caught up with thread yet. Am wiped out. Managed to persuade neuro to let me escape hospital last night though had to promise not to have kids home until weekend at the earliest. Just very very bad response to LP as bloods clear for infection thankfully. LP results should start coming in in the next 3-4 weeks so will have neuro review then. Dr's seem very concerned about my response to tests and the fact that my bloods thin like I chow down aspirin all day long.

Alice, sorry to hear of your ordeal with the LP. I luckily didnt encounter many problems with mine, apart from pain the day after in my back. You mention your clotting problems, I to have an abnormal clotting time. My LP came back normal so even though I have abnormal brain MRI, I was told not MS.

However I have come across Hughes syndrome which seem to fit all my symptoms, have you heard of this? I am not sure what symptoms you have? Mine are mainly neurological.

This past week has been horrendous for me, I was doing reasonably ok till last Tuesday and I woke up all dizzy, I tried to sit up and everything in the room was jerking all around, I couldnt focus, it was horrid. I had to lie back down with my eyes closed for a minute and then get up again slowly and it was ok. but all week, I have had the most awful headache, nausea, blurred vision and spaced out feeling. I thought I was having a brain haemorrhage on Friday it was that bad!. I am still not much better but managing to potter around the house. I REALLY hate fibro!

Hello everyone I've managed to read tons of posts but not all.
I'm 38 and have had severe sciatica since I was 27. Prescribed painkillers which I take daily and am obviously addicted ( codeine based )
After an unsuccessful school appeal for ds 2 years ago I started feeling horrific. Anxiety/panic attacks and was given diazepam. After going up and down dose wise I'm on a staggered reduction ( my idea ) 2mg day and 5mg night plus a dose of 20mg fluoxetine and 40mg propanol.
I feel constantly exhausted and obviously coupled with the pain it's not a nice combination. Family and friends don't understand.
When I'm rational I think it's due to the amount of medication plus having 2 kids, dd 5 and ds 12 who is autistic and a severe obsession with cleaning so I'm stuck in a vicious circle.
I don't like to google as my anxiety seems to be health related but am
Convinced I have got fibromyalgia or chronic fatigue.
My brain seems fuzzy, I'm accused of being "scatty" and I hurt all over most days.
As much as I wouldn't wish this on anyone I'm glad to see that I'm not alone. MN is my saviour :)
Some days are better/worse than others and I feel triumphant if I get through the day without a nap ( sleep is all over the place, usually up between 4/5am ) then manically cleaning before getting kids up/school run etc.
sorry for rambling, I just want to see my doctor and have him take me seriously, I don't want to be dependent on the MH tablets. There's no way I could cope without the pain ones.
Thanks for reading xx

How is everyone?

I'm fucked. And still no LP results

Ooh huge thread of people who get this! Alice thank you for popping onto the thread in chat and linking this one, I'm looking forward to reading!

Just checking in to the thread. Have had ME/CFS for about 14 years. Getting very frustrated lately as my youngest is now at school and I'd love to work but realistically I know I can't sustain a job. I'm volunteering 1 hour a week in DDs class just to do something. I'm a qualified TA.

Fibro and off work yet again. I'm still not managing all of this very well. I don't take any pain meds, but might need to reconsider this. My biggest worry is my job. I have to work but it seems to be getting harder and harder.

Hi guys, thanks for popping in.

Aspie I also can't manage to work. I am 'fortunate' to be registered as a carer for my eldest, so no pressure on me to return to work thankfully. I also do voluntary work once a week.

Kinky can I ask why you don't take meds?

Just saw this on Active and realised I fell off again!

Will catch up later.

Am applying for redeployment - it's official now, I'm not going back to my job role

I'm a very recent DX. I've been 'lifestyle managing' which has done bugger all.

It's the headache that is getting me at the moment - over a week now.

Been back to the GP and now have gabapentin, so will see how I go with them.

I say recent, it's nearly been 3 years.

I was DX by fluke and only started to develop problems about a year ago.

Dx with me in 1997
Dx with fibro in 2010
Struggling atm with dh away and a nasty virus
Take Otc painkillers and use heat pads when it's bad
Can't take heavy duty stuff til dh gets back on Saturday as I'm alone with the dc

I only work 1.5 hours per day but I struggled today.
Feel very sorry for myself
I'm 43 and feel 93

Badders it is so rubbish. I feel like my life has been stolen from me. I also think that other people don't understand it and think I'm being lazy.

Gabapentin - I feel totally out of it. I burned breakfast. I can hardly type. There's no way I would drive. Is it always like this or is it initial side effects? I am supposed to be going back to work tomorrow, driving there, and I feel horrendous. I'm not even sure if my fibro is still bad as I'm so out of it.