I know im being very dramatic but I feel as though I can have this rant on here

[bev2002]

How often are people having flare ups?.I know everyone will be different but mine are becoming more regular now. I'm not a good patient as I'm very active and on the go but when these flares are happening I've got no control over what I can do i just cant seem to fight it. I was practically bed bound for 2 weeks in November and again most of this week. I haven't got a concrete diagnosis yet but this is what I cant understand. One minute I'm functional and on the go and doing kick boxing then bang! I'm floored and sleeping for England I actually get to the point where I'm convinced I'm bloody dying. I very rarely get headaches but these are also becoming more regular. Just the thought that someone else can relate to me helps,thanks bev x

[LupusKaren]

Dear Bev, I can feel the frustration in your post, I am so sorry you are having such awful periods of overwhelming fatigue. You say you are un-diagnosed at present, what tests have you actually had do you know? Are you being investigated for Lupus?

I am diagnosed, (2009) with Lupus and APS (antiphosolipid syndrome triple positive) and have had a good run up until last year, and have been suffering from an unforgiving flare since, I had several pulmonary embolisms in both lungs last year, and this was it would appear APS driven, with the added bonus of Lupus whooping my backside.

Lupus can be extremely unpredictable, the master of mimicking other conditions, but what I can tell you, and this is not a pop at you, stress, or indeed fighting against a flare, will invariably make it worse, and whilst I sympathise wholly with your being confined to bed and barracks, trust me when I say, it was probably the best thing you could have done. I appreciate when you have family, especially with children, rest can be a challenge.

I used to get very irked when told I need to listen to my body, learn to pace, but at that time I was not willing, and to some point still am unwilling, to give into this dratted disease, this time I had no choice, and have save for necessary appointments not left the house since much since Dec 18, I resent it yes, am I accepting it, this time yes, because I know if I push it, I will end up so much worse.

I think for you, going forward, a diagnosis should be your aim, I hope you have a good GP who can help get you before the relevant clinicians, and run the appropriate blood tests. Have you read any of the Lupus UK publications?, link below, they are excellent, and there is one on fatigue and lifestyle.

And to close Bev, your not being dramatic at all, fatigue is frustrating and impacts on everything day to day, and can as the leaflet explains become a vicious cycle, but one can put in place strategies to deal with it.

Your not alone, and any help we can give here, we will.

Take care and best wishes

lupusuk.org.uk/publications/

[bev2002 in reply to LupusKaren]

Thanks for your lovely message Karen.

yes I am undiagnosed at the minute,16 years ago I had gullian barre syndrome whilst I was pregnant with my first daughter,I've had a brilliant recovery compared to a lot of people but I've had ongoing issues ever since. I got to the point where I had had enough because I was getting so poorly so went to the gp and they referred me to immunology. At the beginning they thought I had cfs or ME,they have done loads of tests but to be honest I don't know all of the tests they have done and what they have or haven't ruled out. The only things I know of that came back in my bloods was a low b12,low immune system and slight inflammation markers and I always have a fast heart rate. The doctor had mentioned the boom and bust pattern and to pace myself to reduce flare ups but its more annoying when they are mentioning these things but still wont tell you what's going on.

Sooo the break through has been the rash I have been getting on my face when I'm having flare ups. I showed it to the nurse when I went for a cyst on my back and she told me to see the gp as it looked like an auto immune response to something. I went to the gp and she wanted a second opinion and then said she thought it might be lupus.

I will def have a look at that link thankyou.

I just need some answers to what's going on so I can understand and move forwards,thanks again x

[bev2002 in reply to bev2002]

I'm not sure how to upload photos on here

[Angie245]

I’m also newly diagnosed and gone from a full time job, training HIIT 5x a week and running round after kids to having no control over my body! However first step accepting I’ve had to make drastic changes! I take COD liver oil with Omega 3, a multivitamin and gluecoucimin (I may have spelt that wrong) I’ve also found changing my diet has helped but I’ve also been on steroids so could just be that. I have tried to maintain as active a lifestyle as possible and this has helped a lot with the stiffness. I attend yoga and stretching classes. I know a trigger for me is becoming too fatigued.

I was struggling like crazy in the mornings to get out of bed and it was getting later and later sometimes 1-2pm this was then causing me problems with sleeping at night. I now no matter how I’m feeling hurl myself out of bed at 7:15am even if it’s to end up on the sofa. I’m up and I’ve moved this is definitely having a better impact on my sleeping habits ( I actual sleep) even when pain is bad as I’m so exhausted by the end of the day. The only issue is at 32 I have 0 social life but that can come in time I suppose. Hope that helps. I also keep a diary monitoring pain what I can and can’t do sounds silly but it helping me build a bigger picture of how my Lupus affects me personally. Good luck. ❤️

[PMRpro]

I just posted this link to a post of mine for someone so I'll take advantage of it being handy!

Of course you feel like this - we all did and many never stop feeling the anger and trying to fight it. But fighting it isn't always the best way to be able to live well, or even better, with chronic illness. In fighting you are wasting energy you could apply more usefully elsewhere. Accepting the limitations and finding how to work around them will give you a better and smoother quality of life. It sounds preachy I expect - but it is true.

Try keeping a diary of your good and bad periods - you will possibly find that you are feeling good and do loads - and then crash. Having crashed you must rest and recover, even if slowly. Then you build up to too much action again. Rinse and repeat. You may not have a label yet but you have something, probably autoimmune in nature, and you have to learn to live with this gorilla (one of the links in the post) more smoothly and not crash and bang around to wake it up. And at present you are in an early stage probably - these illnesses do tend to get worse before they can be treated the right way and get better. Finding the right label and hence the right treatment is difficult and takes time. But even with the label and some form of treatment a lot of things won't change dramatically. And managing a chronic illness is a full-time occupation I fear.

healthunlocked.com/pmrgcauk......

[bev2002]

Its trying to be aware of what is too much because I don't seem to realise that until I crash. What is too much?

when I look back to last week I was so tired on Thursday but I still went to the gym,come sat night I slept for 10 hours,9 on Sunday then everyday after that I had to go back to bed during the day which for anyone who knows me knows that is unusual for me. I've had insomnia for years and I'm very hyper active.

I am feeling much better today but I have to stop myself from going full steam ahead again. I am going to have a look at some of the links to find out more thanks x

[Tiras]

Hello Bev;

I understand completely! Actually I am getting ready to do a post about my left foot. I have a place on my right foot that is healing but, it has already been 2 1/2 months and it is not healed completely yet! Now I am starting to get rashes on my left foot! I too, am very active, and yes it put a dampener on anything we try to do!

Unfortunately, I don’t have an answer for you, with flares, as I have been dealing with this (and it is starting to get worse and more frequent) for 5 to 6 years.

I can wish you the best and hope you find something to help, if you do please share, and I will share if I find something to help!!!

You will be in my Prayers and thoughts!

[Krazykat26]

Hi bev

In the course of time u will begin to understand what works for u n what doesn't..I think it's all a bit hit n miss for us all until we find a new way of living our lives

I was so ill for so long that when I did have help n felt slightly better I was elated...yayyyy it's under control..I've got some energy..whoop whoop!! Only to discover that it was temporary because I overdid it n then crashed again next day..for weeks. So now when I have some energy I'm very aware that I have to pace myself..hubby keeps me in check there..at first I was like ok hubby don't go on about it..I'm fine..but it really does make sense..so I try n pace myself but people can see now when I'm overdoing it..my daughter's are the same.

U will find your own way of living by watching how things r with u n u will make the adjustments accordingly. Xx

[bev2002]

Some of the symptoms are strange when we talk about levels of energy and boughts out tiredness because this all started with me after having gbs but I was diagnosed with bipolar and ptsd so I thought it was down to that. I've noticed depression and wrong mental health diagnosis's seems to also be a common thing hmmm interesting x