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Chronic Fatigue Syndrome/ME/Fibromyalgia - for support

1000 replies

Katymac · 17/09/2015 11:27

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 Grin

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)

OP posts:
Pleasemrstweedie · 28/12/2015 19:44

If you've had Glandular Fever, check out the Epstein Barr virus, which is what causes GF. It makes all kinds of mischief in the body.

AliceInUnderpants · 31/12/2015 19:15

This afternoon I've been watching the 2014 movie 'Still Alice'. It's about a woman of 50 who develops early onset Alzheimers and has to come to terms with her life changing.
She does a speech at a course thing about her illness, and some of it sums up perfectly the feelings of loss that come with being chronically ill.

"Everything I accumulated in life, everything I've worked so hard for - now all that is being ripped away. As you can imagine, or as you know, this is hell. But it gets worse. Who can take us seriously when we are so far from who we once were? Our strange behavior and fumbled sentences change other's perception of us and our perception of ourselves. We become ridiculous, incapable, comic. But this is not who we are, this is our disease. And like any disease it has a cause, it has a progression, and it could have a cure. My greatest wish is that my children, our children - the next generation - do not have to face what I am facing. But for the time being, I'm still alive. I know I'm alive. I have people I love dearly. I have things I want to do with my life. I rail against myself for not being able to remember things - but I still have moments in the day of pure happiness and joy. And please do not think that I am suffering. I am not suffering. I am struggling. Struggling to be part of things, to stay connected to whom I was once. So, 'live in the moment' I tell myself. It's really all I can do, live in the moment. And not beat myself up too much... and not beat myself up too much for mastering the art of losing."

Maiziemonkey · 02/01/2016 03:14

Thanks for the quote alice , it has been rattling around my mind all day. Think any health condition can have the positive effect of making us change perception of our selves and others, assume less, maybe encourages us to be kinder. ironic that bad experiences can have this effect, but part of life I guess. I hate forgetting stuff too. one time couldn't remember having a convo about something with my husband. But it has also made me slow down and focus on the moment more

Badders123 · 06/01/2016 13:35

Hi everyone.
Long time lurker on this thread!
I Was dx with me in 1997 after 2 years of chronic ill health.
I got a fibro dx 5 years ago after a positive lupus blood test.
Saw a rheum and she dx with fibro. No treatment plan or meds.
Not convinced tbh, so I have pretty much ignored the dx and just carried on as best I can.
However, in the past year I have been having pain in my right armpit and down my arm, and also along my right thigh.
Could this be down to the fibro?
I have been to the dr and had some bloods and an x Ray done today.
I have also recently had scans due to gynae issues and bowel issues...all came back clear.
I am peri menopausal, and the dr asked about night sweats (which I have been having for some time) and like a moron I googled and am now convinced he thinks I have cancer :(
Any advice/thoughts?
Thanks

Badders123 · 06/01/2016 14:24

Should have said it was a shoulder X Ray and bloods were;
Esr, fbc, crp, gp profile and vit d.

Pleasemrstweedie · 06/01/2016 18:00

Forgive me if I'm missing something, but why a fibro do if your lupus test came back positive?

If you're in the UK, there's a good chance that you are vitamin D deficient. It's worth looking up the treatment protocol for your area before you get your results, so you can ensure you get treated properly.

As part of a full work up, would your GP test ferritin, vitamin B12 and folate as well?

Badders123 · 06/01/2016 18:05

I was told that a positive blood test alone is not enough for a dx of lupus.
Basically, you need to be much more ill than I am to get a dx.
I'd be surprised if I was vit d deficient tbh...I eat a lot of eggs! :)

AliceInUnderpants · 06/01/2016 18:13

How many eggs do you eat? One egg will give you around 40IUs. I take a 1500IU vitamin d supplement daily.

What other criteria do you have to fit for a lupus diagnosis? Why do they do the blood test if you don't have the other symptoms?

Badders123 · 06/01/2016 19:06

No idea!
I think the blood test was the ana one? (Sorry it was a few years ago on and my memory isn't what it was!)
So.....no one else with these fibro symptoms then? :(

AliceInUnderpants · 06/01/2016 19:20

I have pain pretty much everywhere, but can't say I've specifically picked up on the pains you've mentioned. What sort of pain? Nerve? Muscular? I guess it's likely it will be put down to the fibro.... most stuff is, Drs don't tend to even want to find out what is really causing it once you have the fibro diagnosis. I was actually fairly happy when the neuro told me recently she is treating me as 'unlabelled' for the moment.
A positive ANA test can indicate other issues, if not lupus. I take it these were also all ruled out?

Badders123 · 06/01/2016 19:28

No.
Just got told it's fibro and that was that.
Have had an awful few months health wise....repeated nephritis (common with lupus apparently) but no one has seemed to make the connection.
Lots of bowel and gynae issues, pain and fatigue.
The pain is sort of muscular I guess. Hard to describe it.

AliceInUnderpants · 06/01/2016 19:33

Are you on any medication? I take it that is regularly reviewed?

Badders123 · 06/01/2016 19:38

No.
I take paracetamol daily and when pain is bad I have some nefapam and codeine left over from my gallbladder op 2 years ago.
Oh! Also meant got ask....anyone had atrial fibrillation as part of their me/fibro?

Badders123 · 06/01/2016 19:39

No reviews

Badders123 · 06/01/2016 19:40

I think it's sort of got to the stage where the drs just have no idea what's wrong with me.
I am peri menopausal which doesnt help.....Lots of horrid symptoms there. And hormonal treatment doesnt seem to suit me.
Am taking menopAce in an effort to feel better

AliceInUnderpants · 06/01/2016 20:02

Okay for the heart stuff, check out a condition called POTS

www.nhs.uk/conditions/postural-tachycardia-syndrome/pages/introduction.aspx

Very common with fibro.
If the doctor has diagnosed fibro, you should absolutely be receiving help/treatment/support. Fibro is supposedly a diagnosis of exclusion. There are a host of other conditions that need to be a ruled out before a definitive fibro diagnosis can be made. The fact that doctors are not doing this is leading to every Tom, Dick and Harry to be diagnosed with fibromyalgia very easily, minimising what some people go through for years!
At the very least, you should be offered some medication, if you are willing. Usually a combination of several medications can be more effective than one individual. Paracetamol absolutely wouldn't be touching the pain if it's fibro though.

Badders123 · 06/01/2016 20:18

No, it was def atrial fibrillation...spent 2 days in coronary care after being blue lighted in
My dr seems to think that's it's hormonal but I haven't found any info on that wrt AF

Badders123 · 07/01/2016 18:58

Sorry to be hogging the thread somewhat but I also wondered if any of you had had an endometrial ablation for troublesome periods?
Have been offered one but obv reluctant
I have 2 Dc and a dh that's has to work away at times...it's very difficult.
Wrt the flu jab...I always have one as it was a nasty bout of flu in 1995 that started this whole mess!
I am 43 but feel 73 Sad
I have to take my mum to the dr tomorrow so i might have some results back from my tests....

AliceInUnderpants · 08/01/2016 09:52

Badders Not myself, but my mum had endometrial ablation a few years back, she would have been around 50 at the time. She had to set an alarm for every hour or two during the night to change a super super plus tampax Sad She had a bit of bleeding for a few days following the procedure and nothing since. She says it has changed her life!! If you did decided to go ahead, would your DH be able to book a week or two off work to pick up the slack with the DC to allow you to recover? IIRC, my mum only needed a day or two off work.

moosemama · 08/01/2016 10:56

Badders so sorry you are suffering so much.

I have recently been diagnosed with Autonomic Dysfunction with POTs and have an erratic heartbeat as a result. Currently awaiting a cardio appointment, but the consultant I saw feels standard Cardiology are unlikely to get to the bottom of things, as the erratic heart issues are almost definitely autonomic in origin. This was backed up by having one ECG with two abnormalities (one of which panicked my GP) and one totally normal one within one week. Apparently he sees it all the time.

Autonomic dysfunction can cause a ridiculously wide range of odd symptoms. Digestive issues are extremely common, migraines, problems with controlling your temperature (including chills and sweats), neuralgia type pain (in my case stinging/burning skin, allodynia - hypersensitivity/pain) flushing/rashes/hives, palpitations, brain fog, exhaustion, dizziness, fainting, tremor/tremulousness. I also have problems with excessive (to the point of distressing) yawning episodes, excessing eye watering, facial numbness and more - the list goes on and on and is rarely the same for two people.

A lot of my symptoms are exacerbated by my hormonal cycle and some are at their absolute worst 7-10 days before my period.

A bad episode can precipitate prolonged periods of generalised exhaustion with muscle and joint pain.

My POTs symptoms are pretty consistent, but I also get episodes of tachycardia/erratic heartbeat for no apparent reason - last night one kicked off when I was just lying on the sofa.

I spent years being sent back to Neurology repeatedly, on the assumption that the worst of my symptoms must be neurological in origin, but they were looking at the wrong nervous system, as it's my sympathetic and para-sympathetic nervous systems that are malfunctioning, rather than my brain. Basically, everything that's supposed to run in the background is affected.

I had to go private in the end (dh has a new job that comes with private healthcare) after years of being fobbed off by various doctors in the NHS. The consultant I saw is an advisor to the POTs UK charity, but is actually a General Medicine Consultant and I honestly think general medicine is the way forward for people with a wide range of unusual symptoms that can't be explained by any one discipline. He took a full medical history from birth and spent an hour talking through my specific symptoms, as well as how I feel generally/day-to-day with me, before doing an active stand test and ECG and ordering a tilt-table test, but he pretty much knew exactly what the problem was by halfway through the consultation.

I had never heard of a general medicine consultant until recently - as my Mum was referred to one on the NHS as tests in multiple disciplines had failed to produce an answer for her problems. The GM consultant she saw was able to organise a wide range of tests across different disciplines to get a more complete picture of her overall health, which helped him come up with some idea of where the problem might be and refer to someone relevant to that area for further investigation/treatment.

I wonder if you could ask to be referred to see one via your GP, as their job is to look at the person as a whole, rather than through the blinkered viewpoint of anyone that has a particular specialism.

I'm not saying you have AD or POTs, but ultimately, seeing someone that will take the time to look at you as a whole and join the dots may be the only way to get to the root of your problems.

Also, remember you can ask for a referral to any NHS specialist in the UK, - they may try to dissuade you but you can insist - so perhaps see if you can find out who is the best person to see for Lupus and ask for a referral to them, especially as you were positive on a blood test and the repeated nephritis alone seems to back up that as a probably diagnosis.

Re ablation, I know two people that have had it done and have been really pleased with the results. I'd definitely insist your dh books some time off afterwards though, so that you have time to rest and recover.

Badders123 · 08/01/2016 13:00

Hello moose!
Sorry you are still suffering too :(
AD Sounds very similar to what I have tbh. Never heard of it!
Is there a treatment plan?
Sorry if you have a,ready answered this...the Brain fog has properly descended today!

Badders123 · 08/01/2016 13:01

I could go private as I am covered under Dhs work policy but only for tests.

moosemama · 08/01/2016 14:11

Oh, if you can go private - definitely do it. We're only covered for tests/diagnosis and initial treatment. They don't cover treatment plans/ongoing care for chronic conditions. Just having a full hours' consultation and having a proper, full history taken was an absolute revelation, not to mention having someone actually listen, without implying I was either exaggerating or lying.

It helps to take someone with you that sees you at your worst and can describe your symptoms from their perspective. My consultant addressed as many questions to dh as he did to me, because at my worst, I can't think, let alone retain information about my symptoms and some of the questions were about my appearance, pallor, flushing etc at the time, which obviously I'm less likely to know.

We have a £1000 limit on outpatient consultations and tests per person per year, but my investigations will come in under that.

There are lots of types/causes of AD, some of which are known condition, but others are idiopathic/of unknown cause. The other term for it is Dysautonomia. This is a very useful website for learning about it.

Unfortunately it's not something most/many doctors know about either and the majority of people that have it spend years being told they are depressed/neurotic/hormonal/all of the above - or worse, before finally coming across a doctor that knows what he/she's looking at - if they're lucky. There's not a massive amount of knowledge in the NHS about it, although there are now centres of excellence in London and a couple of other places.

There's no one treatment plan, it's more about trying different things to control/alleviate symptoms. There are quite a few different things they can try and they give you advice about ways you can change your lifestyle to help as well.

I haven't had any treatment yet, but to be honest it's a huge relief just having a diagnosis and finally knowing what the problem is. I have had everything from MS, to Lupus, to Dementia suggested and tested for over the years, as well as all the usual depression, anxiety, hormones etc. At one point there was a lot of fuss made about the lesions on my brain scans as being a massive red flag for something serious going on. Then, when they couldn't work out how those related to my symptoms I was told they'd changed their mind and they now felt the lesions were not significant enough to be a problem. Confused

When I went for my referral I asked the GP to refer me to a specific consultant re possible POTs. GP's response was that I couldn't possibly have it, because it's so rare and then questioned if I had been reading Deliciously Ella Angry - I hadn't. They also questioned the sense in seeing a general medicine consultant, despite him being a medical advisor to POTs UK. So, despite having symptoms since upper junior school - over thirty years, having endless tests and investigations excluding everything obvious, in that GP's opinion it was highly unlikely that I would have POTs because it's rare - loving their logic there! Grin I would add that I also had two pages of heartrate monitor readings that clearly showed the heartrate increase patterns required for a diagnosis of POTs. I guess the GP thought I'd made that up because I wanted to waste time and money taking made up figures to a specialist appointment, where I would clearly be proven wrong. Confused

Badders123 · 08/01/2016 14:27

I am going back for test results next week....I will ask the Dr about it....

moosemama · 08/01/2016 14:59

I hate to say it, but don't ask - tell. Honestly, after this long being polite and 'asking' doctors it only took one appointment to tell them I wanted a private referral to get to the bottom of my problems.

Years and years of fighting for ds1's diagnosis and support, then ds2's JHS and I totally failed to do the same for myself.

If you have private health insurance, identify a consultant you think might be able to help you and 'tell' your GP you want to be referred to that person.

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