Could I have [mild] ME?

[Christmastreedelivery]

Hello.

have had a bit of a light bulb moment this week. I am starting to wonder if I might have ME, in a mild form?

I have noticed that I seem to go through cycles of being ok. When I am in a cycle of not being ok, I have the things in my list going on.

Aches. Mainly joints, it hurts to walk up and downstairs. My wrists ache, and I get shooting pains through my long bones. My back aches in a tired muscle sort of way. My pelvis and hips ache like I have been running, even when I am just sitting.

Tired: No matter how I catch up on sleep, or get a normal amount of sleep for me, I feel dog tired. Like jet lag, I feel myself nodding at traffic lights.

Words: I get them mxed up, and use the wrong ones. I start a sentence fine and then it runs away from me and I can't finish it without really concentrating and stumbling through.

Skin: Sore. That's the only way I can describe it, especially over my cheeks and arms.

Sweating: I have days [the bad days] where no matter what I do, I just pour sweat. Only my armpits, but still. Could do without it!

Palpitations: yes. These are there on the down days, at rest. I've had a 24hr tape, it was fine. Naturally I didn't have any during that 24 hrs!!

Treacle: Feels like I am wading through treacle. Not surprisingly on these down days I am grumpy and horrid mummy

The thing is the cycle. That's what got me thinking. Yesterday I was great, baked, did crafts, did some plannning for work, tackled some jobs that needed doing [phoning for appointments and stuff like that]. I thought to myself last night, 'OOO you'll pay for this good day tomorrow' and that rang an alarm bell. I shouldn't be thinking like that should I?

I went to town for a 6 hour shopping trip, and seriously I had to go to bed for 2 days afterwards.


What do you think?

BTW, I am very unlikely to be anaemic, and I have had thyroid checked in the past.

Have Dr's appointment tomorrow. Will he think I'm a moaning bored mum who whould loose weight and get out more? I'm scared of getting the face!

[1talia]

Sounds like Fibromyalgia too x

[CFSKate]

I posted earlier in the thread about the XMRV research - it now looks like it wasn't XMRV, but there was an interesting bit in the press conference, from the transcript

"there was an enormous amount of immune-reactivity that appeared to be non-specific in these individuals. So at a time when people were saying this was a psychosomatic disorder, I said two-thirds to three-quarters of the individuals whom we?ve studied have polyclonal B-cell activation. They?re sick. We don?t know why. But they?re sick. So that?s really the take home point."

[waterlego6064]

Hello everyone. Have just been searching through MN archives for ME/CFS threads and this one seemed to be reasonably recent so I hope you don't mind me resurrecting your thread to ask some questions.

My brother has had ME/CFS for most of his adult life (nearly 20 years). In the early years, his health was poor a lot of the time but in recent years, he has been mostly well but with the occasional, horrendous, crash. He is having such a crash at the moment. It started with back pain and achey limbs a couple of weeks ago. This progressed to include involuntary limb movements- like tics- and 'electric shock' type feelings. Although these physical symptoms have subsided a little, he is now suffering with extreme anxiety- I would say they are full-on panic attacks. He is getting very little sleep (2 hours sleep in the last 48 hours) and is beginning to have hallucinations and extreme sensitivity to noise. He has expressed suicidal thoughts; it is all pretty awful for him and for all of us who love him.

Sorry for rambling but I thought it best to give the background. Can I ask those of you who suffer with ME/CFS, what sort of things tend to trigger your 'crashes'? Once my poor bro gets through this current crisis (and
I have to believe he will, because he has before and, the alternative is..what?) I thought it might be useful for us to try and think about what might have triggered this latest episode. The last time he had one was just before his son was born and he was extremely anxious about the forthcoming birth and looking after a newborn. One previous episode seemed to be triggered by a long-haul flight and jet lag.

Apologies this is long. Any thoughts or opinions much appreciated.

[Oshposhnosh]

I was also described anti depressants with m.e and they too helped! My boss at the time was a complete b!!!h made me 100x worse through stress and in the end I left working for her! No matter what you must listen to your body and if you feel a lapse rest and work can wait! Hope u stay feeling better x

[aliasjoey]

I've only been taking these anti-depressants a week, but already feeling better, especially sleep. Even my legs don't ache as much. What the heck does that mean? I was on seroxat for anxiety, not depression! I'm sure I wasn't depressed, so why have the tablets worked?

Bad news is my boss is really being difficult now. (I do feel quite depressed about that) Despite telling me to take a week off work, she's being quite unsympathetic... my work has suffered lately and she hauled me over about it. Now I feel better, and working harder - no doubt she will think it was HER intervention that has made me pull up my socks - rather than the drugs.

[Oshposhnosh]

Hey! Sounds very much like m.e! I had glandular fever at 18 and m.e at 23 I'm now 33 and still suffer with symptoms time to time......my saving grace when it was at its peak was reflexology and especially cranial osteopath and the usual rest, hope u r ok as a terrible illness that MANY dont understand :(

[CFSKate]

aliasjoey - hi, yes, or flaxseed/linseed.

The fundraising for the UK ME centre has reached £56,000 - they need £100,000

details of proposed centre investinme.org/Research%20-%20ME%20Institute.htm

fundraising information blog.ldifme.org/p/how-to-help.html

[aliasjoey]

Thanks Kate Is that like fish oils or evening primrose oils?

After dropping kids off at school, I decided to have a nap, set the kitchen timer for 1 hour. Woke up at 10.15 and thought '10 more minutes' and immediately went back to sleep & finally woke up at 11.45! I keep reminding myself 'I am not lazy' but its very hard to believe that...

I told my boss - I only work part-time - I had a post-viral fatigue thing (could not bring myself to say 'chronic fatigue' ) She insisted I have a whole week off! Although she did talk about how 'we all feel a bit run-down right now, there are a lot of viruses going about' still she could be right, it could just be a virus - no-one actually knows, not even the doctors!

Only been taking the Mirtazapine a few days, but I think I'm sleeping better. DH says I snore though...

[CFSKate]

aliasjoey - for brain fog, I find essential fatty acids do help a bit.

[aliasjoey]

After nine months of feeling run-down m
My blood tests (including thyroid, ferritin, B12 etc) have come back normal. Still waiting for Vitamin D results, but fatigue as a main symptom isn't normally associated with Vitamin D deficiency.

My GP didn't actually mention CFS but I could tell thats what he was thinking - he talked about post-exercise fatigue and mitochondrial cellls. (and he reassured me it wasn't all in my head!)

What's confused me, is I seem to have a 'mild' case (I didn't know there were different levels of severity) so I hope it doesn't get worse. Also I don't know if I should tell my work - it doesn't really affect my job, except sometimes I feel very forgetful and lack concentration. Will they just see that as an excuse? Or should I keep quiet and book a days annual leave every few weeks to recharge the batteries?

I'm worried that I don't have the energy to do some of my work, like I can sit here and do the run-of-the-mill stuff, producing regular reports or whatever; but if I have to think about something new, eg. planning a new initiative, my brain just goes mushy.

[CFSKate]

There will be a screening of "Voices from the Shadows" in Dumfries in September. www.facebook.com/VoicesfromtheShadows?sk=wall voicesfromtheshadowsfilm.co.uk/screenings/

[out2lunch]

hi everyone - can i ask you all a question?

my ankles have swollen first one then the other - this has happened a few times in the last month or so - so off to gps tomorrow

anyone else had this - is it connected to ME?? i have been diagnosed for 10 years this year and never had this before

[2old2beamum]

Have just read you have had radiotherapy very common cause

[2old2beamum]

poppybooHave symptoms identical to your list. Went to GP blood calcium levels high which indicates hyperparathyroidism, like you postcancer patient.
The description of this is
Moans groans bones stones and psychiatric overtones!
BTW are you peeing more? Am seeing endocrinologist on Weds not too concerned as under 0.5% are malignant.
Found Hypoparathyroidism.uk good, deals with Hyper as well.
I feel like crap.

[magso]

Hi poppyboo, I am sure you are welcome just that this thread has been quiet of late.
I am sorry you are feeling so fatigued - and yes it does all sound familiar!! It is a good idea to discuss things with your GP, to make sure all other causes of fatigue have been ruled out. Your oncologist is likely to know more about the long term effects of the therapies you had - could you have other deficiencies besides those related to thyroid for instance? Are you under a specialist for your thyroid and do they know how fatigued you are? There are some clinics for PVFS/CFS/ME scattered about the country. I am currantly attending my local one who are giving advice on pacing (I have got quite good at that anyway and it sounds like you have too), and getting nutritional support privately, to help boost nutrients that may have been depleted due to treatment I have.
Hopefully this will bump the thread for others to chat to you.

[CFSKate]

www.dailymail.co.uk/debate/article-2141230/All-mind-Why-critics-wrong-deny-existence-chronic-fatigue.html

[CFSKate]

www.hfme.org/adrenalinesurgetips.htm

This is worth a look for both patients and carers.

[poppyboo]

(My thyroid gets checked regularly, I have an underactive thyroid and I'm on medication for it, it got damaged in the radiotherepy I had. I've also had chemo too)

[poppyboo]

I don't know if I'm welcome here or not but I think I might be suffering from either: Post Cancer Fatigue/ME/CFS
for the past 10 years. I've been too scared to go to the doctors as my oncologist woudl just note it down when I spoke of extreme tiredness and make no comment so it made me feel ashamed. It's got to the point now where I feel I need a diagnosis though just so I can accept my life as it is now. Here's a list of my symptoms:
-Feel exhausted day to day.
-Feel exhausted directly after excersise.
-10 hours of sleep each night, feel exhausted when I wake up and get out of bed.
-My hips feel painful when I walk sometimes.
-I'm forgetful, get confused. Sometimes I find odd things in the fridge which I have out there rather than cupboard for example.
-I get confused half way through a sentence. Can't thing of word etc
-I'm clumsy,irritable, at times snappy.
-I find it exhausting to walk up a staircase.
-I get exhuasted by simple activities like hoovering, or even bending down to hoover under a rug.
-I get very cold. At night I have 3 blankets and a hot water bottle and two pairs of socks and a duvet. My feet feel like ice sometimes.
-In the evenings I need to lay down on the couch I'm so tired, all evening until bed time.
-Feel out of breath walking up hills.
-find it tiring to complete a job and have to force myself to finish it.
-I find it tiring to take a shower.
-Find it very difficult to decide things.
-My body hurts/aches inside my bones, especially in my legs.

Any thoughts anyone?
I'm 33 now. When I was 21 I had Hodgkins Lymphoma stage II B
I've also had Wolf parkinsons white disease (Heart disease)

[CFSKate]

This other thread is also worth a look
www.mumsnet.com/Talk/general_health/1393407-Post-Viral-Fatigue?pg=1

[CFSKate]

ME in Northern Ireland

[magso]

Icolana good luck with the diary. I am supposed to be doing the same in a couple of weeks. in readiness for an assessment at my local CFS/ME self management clinic. I have set up lots of direct debits because I just forget otherwise, I have systems in place to be sure i remember all sorts of vital things (like my sons medicines and homework). The frightening thing about my memory is that it simply does not work - I can completely forget something - no recollection at all ( although I have some awareness that something is amiss) , and then later another thought will trigger the memory clearly so I cannot trust my recollection. I struggle with speech too and my spelling and word retrieval is useless. I hope your ankles settle down.

Eaglewings I am so sorry about your miscarriages. I think people have reported improovment in pregnancy also, but I think those on here know that the primary difficulty in CFS/ME is not depression. I do hope you stay better now.

Christmas tree are you still on the thread under another name now? Hope you do not mind the rest of us!

[eaglewings]

Hello again, I was response on here, but lost track and have name changed.
Just to give weight to the argument it's not all in the mind and caused by depression I thought I'd let you know what's happened to me

Ive had ME twice, the first time before I was pregnant and it improved when my DS was born, and again for the last 3 years. I am suddenly much better, even though winter is often worse fr symptoms.

So what's changed? I've had 2 miscarriages, the second pregnancy finished when I would have been 3 months plus.

I feel so so much better physically , yet I've lost my baby, so how does that make sense if it's a psychological illness!!

[Icolana]

Hi, I have scanned this thread. Cant read it all as I keep going foggy, sort of wondering off in a daze. Its heartbreaking to read what some of you are going through. I am similar problems with diagnosis. I have some hope that the ME and CFS support service in maidstone are going to pull through for me. Im suppossed to keep a record for two weeks of my hour by hour activity; Resting, sleeping, active and all symptoms... I got so fed up with it I have only completed a week. I find it too depressing to log it all and that makes the ME worse. I have had to give up work and am now fighting for benefits of any kind. I have another condition called cluster headaches which I am in the middle of a bout of and at the moment Im finding it extremelly hard to care for my little boy so he is spending a lot of his time at his fathers. I feel like a crap mum. I hate to think what his memories will be when he gets older.
I have sever memory problems, I have had to enter into payment plans for most of my bills as I forget about them or get too confused. I am clumsy and trip over a lot, I lose the words, use other words e.g I hope it doesnt salt as I havent got any snow for the steps . My ankles are affedted badly every now and again. I have had x-rays but there is nothing wrong with them, one minute its fine and the next I cant put any weight on it then it just dissapears and its like nothing happened. I get confused with whether I have dreamt something or if its actually happened. I have to check my phone every morning as I forget who I have spoken to. I am unable to drive a lot of the time as im so tired, its dangerous (I wrote my car off about 18 months ago when I first became ill). I could go on but feel I am just having a self indulgant whinge. Ill leave it now. Im going to try and locate my lipbalm... I may be some time

[CFSKate]

The next ME conference details are out now www.investinme.org/IiME%20Conference%202012/IIMEC7%20Agenda.htm
Also that film about ME is out on DVD voicesfromtheshadowsfilm.co.uk/shop-dvds/