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!

Thank you CFSKate. I've done a little bit of reading about XMRV, but I just get so confused, they all (XMRV/Mitochondria/Mycoplasma etc) seem to fit our family profile - I guess we are just autoimmune types (family history stuff), so it follows that we would fit a proportion of the criteria for each thing.

I stopped doing the reading, because with things the way they are in the NHS, I doubt I/we could get tested for any of them anyway, so it just felt like more and more speculation, iyswim.

I have been much better today, no speech problems and much less fog. Was even able to cook tea for the dcs (which is the first time for a couple of weeks now) - and all this after managing to take dd to toddler group this morning. I don't really get why I'm so much better without more rest though - it seems to contradict the general pattern. I was sure I would be out of it today after yesterday.

Hi to all. Just wondering about whether anyone knows about the power of antioxidants? I'm reading an amazing book by Lester Packer The Antioxidant Miracle and its truly a life changing read. I'm not an expert by any means but its virtually impossible to get the 'optimum' amount of antioxidants from our diet alone. He recommends taking good quality supplements. A friend of mine suffered from migraine and felt really tired especially in the mornings and since she started taking them she's great and has an hour and a half extra in the mornings. I myself have great energy even when I've had quite a few sleepless nights with my youngest! and this is due to a supplement I've been taking which is totally natural science based and revitilises by working on the mitochondria- which are the 'power plants' of the cells.It is fantastic and I know of it helping someone with ME and my mums friends daughter had post natal depression and tried it thinking she had nothing to lose and was amazed how quickly she felt improvement. I've heard so many great things about it.Helps with muscle pain and mental clarity and sexual libido! I hope you all get better. I must say I'm not the biggest fan of doctors. Some better than others. They so often don't look at the person as a whole- body and mind, and just want to dish out medication. I know medication has an important place BUT we can do so much with antioxidants its amazing.Read the book {ps. I don't know the man and get nothing 4 recommending in case you're dubious!}I'd best stop now!!

magso you really do sound as if you have sjogrens with you saying you have the dry mouth too. Sjogren's gives you ME/CFS.

tree my eyes have calmed down alot thanks, with the punctum plugs and i have found eye drops too help.Using them about 6 times a day rather than 6 times an hour At the mment im still in the blissful period of less pain and fatigue after a blast of steroids. Still waiting for it all to return though

good to hear you are feeling somewhat better at present Aly. I hope the chloroquin is able to damp down your symptoms as you come off the prednisolone. I feel I am left to try and sort myself out. I will think about Sjorgrens but my blood test is only FBC and thyroid (not ESR) so I doubt it will help.

I get bot the physical too tired to speak ( and especially that heavyness of not being able to raise my voice or repeat myself) and the total blankness misfiring word retrieval. Any one else have hair falling out? I bought up half our local health store what with hair vits, green vits and D3!!

Indeed good to hear you are a little improved Aly. Do you have any clue as to how long the steroids have bought you? Or is that a huge unknown?

I can so totally relate to the lost words, I think you and I have mentioned this on other threads Moose? I totally loose words, my dh knows that I have to go away and be alone or lie down when that happens.

I have always put it down to stress, overload, going to fast and getting my knickers in a twist. Now I'm not sure.
I either loose a word and have to shuffle about my brain for it, or say something utterly daft. Like 'dd, open the flower door' when I clearly mean car, am looking at a car, am thinking about car......odd.
Mainly I just loose the words though. Very frustating,and not something I have patience with.

Am tired after mega week. My actual toes ached last night. By happy miracle my ma has been up and stayed up [she lives a good hour away] and so I have had 3 night proper sleep 11-8/9. Made all the difference. I have tomorrow to regroup [clean] and then back onto nights.

I feel I am coping ok at the moment.

Moose. Dr. Go.

huge unknown tree. Im hoping the effects from the steroids last a while longer.Feel like im on speed(just joking)Not got the script for the hydroxychloroquine yet as letter hasnt come from consultant.hmm

Not had blood test results back yet. although my ESR was normal last time (5)

As I think i have said,there is no definitive test for Sjogren's. So no blood test will confirm it.Its just a matter of correlating all the symptoms.
At the moment i am registered in the Lupus clinic so i guess they are unsure.

BTW magso a lady i was talking to at the lupus clinic also had her hair dropping out too.But that is also a symtom of thyroid as well. Have you been tested for lupus as there is a proper test?

Feeling worse by the day atm. Really don't feel very well, but trying to keep going.

sorry you arent feeling so good solo. What is doc doing for you?

Yes Aly I was tested for SLE - ist ANA+ later -). Do you still call it Sjorgrens if it is caused by medication rather than autoimmune malfunction?
Solo sorry you feel so ill.

sjorgrens can be brought on by medication i believe. Alot of antidepressants can cause sjogrens type symtoms. I guess it depends on the doc how they classify it. Was yours brought on by medication do you think?

Aly I have tended to dry eyes for years but the dry mouth only since I was prescribed serevent so I assumed it was a reversable side effect. I can breath much better so can live with it. I have not asked the gp ( though I did discuss it with the dentist) I just buy the mouth spray etc from boots. I have rather lost faith in GPs as you can tell.

Hi all.

Sorry Solo, how's it going now? Any better?

Keep forgetting the ads whichi is probably bad as I'm up to 20mg a day now .

Nights tonight. Have tried to handle it a different way, I slept in until 11.30. Rather than try go back to bed in preperation. That wasn't working as I was unable to doze so much of the time. So I only have to stay awake 22 hrs which might be more dooable, we'll see. Beats 26 which I was doing if I got up with girls.

Symptom wise I've had an ok week. Not so many aches, and those I had mdweek were quick to clear. Amazing the difference with some help. I think not doing school runs and tearing about the house as much has helped big style.

Magso - I'm not usre if you have any benefit that means you get free prescriptions? Maybe the mouth spray isn't too expensive? Have you ever seen a specialist of any sort?

Is sjogrens the same or similar to SLE then?

Tree it must be so tiring swopping to nights! I always remember to give my son his meds ( he has quite a lot) but mine are harder to remeber until it becomes routine. SLE is systemic lupus but sjorgrens can occur secondary to SLE and other autoimmune disorders. I am still under a respiratory specialist but was discharged from Rheumatology after my second ANA test was negative thankfully. I buy a prepaid prescription card but it is so difficult to get a GP appointment that I deal with minor things as much as I can.

moosemama - I think I have posted before about Dr Michael Goldberg in Special Needs. I've just found out he has now written a book, it's due out in a few weeks. "Illnesses such as autism, ADD/ADHD, and chronic fatigue syndrome all have different ?labels? but are actually variations on the same thing: neuro-immune dysfunction syndromes (NIDS)." The book is called "The Myth of Autism: How a Misunderstood Epidemic Is Destroying Our Children", but you can see a video here for free. www.tarzanacme.com/Video.aspx?Vid=158

Evening

Solo, sorry you are having such a bad time of it - do you have anyone who can give you a bit of extra support? Are you having any treatment or support from the medics at the moment? If not, maybe you need to go back and push for some support. I know that sounds daft, given that you probably can't even bear the thought of having to arrange and appoinment and get there. Lord knows I never seem to manage to book an appointment for myself without cancelling it for one reason or another. If its that bad though, something has got to give and you need support from someone/somewhere.

Tree, hope you have an easy shift and can pace yourself this evening. Good to hear you have had a bit of a better week - it makes all the difference having someone else there to help doesn't it. Hope your new sleep-plan works as well.

CFSKate, thank you. I will look that book up and have a look at the video. Can't do it now, as ds1 is currently trying to convince me I'm trying to kill him, by putting capsicum on his plate and is on the verge of full on meltdown.

Magso, what is an ANA test? When they found the brain lesions on my MRI my neuro was convinced I had SLE and said she would investigate further. Next time I saw her she just said that she now didn't believe the lesions were caused by lupus and promptly discharged me. I still don't know what caused the lesions - or for that matter the evidence of recent encephalitis. I have read a bit about SLE and don't think I do fit the profile though.

I've been feeling a touch better towards the end of this week, mainly because I made a conscious decision to ignore all the mess that seems to be multiplying by the second and allow myself to rest. This was helped by the physio telling me on Thursday that my foot/ankle has seriously restricted movement, should have healed much better than this after 8 months and I am not to stand for long periods or walk too far on it until my new exercise start to have an effect and strengthen it. So I feel a bit like I've finally been given permission to rest up.

Hi all...I'm really bad at seeing the doctor for anything and probably especially the ME...don't know why. He's only suggested AD's within the last 12 months that I've seen him, but I said no...I hate taking pills.

I've started to take (when I remember!!!) vit c, d and echinacea. Feel like I'm heading for another cold/bad throat type thing. Fed up with them :( so I thought they might help boost my immunity.

I'm sorry I've not read all the posts, it's just too much atm. I do hope you are all Ok though. ((hugs)) (sorry! but it's the best I can do right now).

Solo sounds like you need a ((hug))! Sorry you are not too well but hope you can fight off whatever bug is trying to get at you. I too do not take all my symptoms to the GP unless they are related to a more'traditionally' understood thing such as asthma. There is nothing more depressing than being offered AD without really listening! I eventually gave in to ADs after reading that raising seretonin levels can help fight off certain illnesses.
CFSKate I listened to much of Michael Goldbergs lecture - it was really interesting and hit a nerve ( since my son has ASD/ADHD/LD). It all seems to add up and make sense. Lots to think about. He seemed to be against most modern therapies (for ASD) so I wondered how he treated the children he was talking about. He mentioned SSRIs to improve brain function.
Anyone else with high IgE levels?
moosemama - the ANA test is a blood test for antinuclea antibodies I do not fully understand it but 'normal' folk do not have these antibodies, so having them is a sign the autoimmune system is over reacting.

I've listened to about 3/4 of the lecture as well. Certainly food for thought.

Magos, I think he said somewhere that the first line of treatment is a 6 months course of antivirals and that he then uses ssri's to increase brain function in the temporal lobes.

I really must find the time to listen to the rest of it.

magso - I'm sure I have seen information about Dr Goldberg's treatments on the
net, but I am just too tired to track them down now. I will definitely be getting hold of the book and I will post about it to you in SN when I have it. Dr Goldberg's website is nids.net/
This website looks like it is on similar lines, although I can't actually see him mentioned on it www.stopcallingitautism.com/index.html

While looking at that website to see if it is linked to Dr Goldberg, I did find this about treatment www.stopcallingitautism.net/medicaltreatments.html but I still don't know if they are connected to Dr Goldberg.

eyes not good today
Have had mild pancreatis for a few days. Ive had it twice before for no reason (im not a drinker either). have had to drink clear fluids and drink clear soup for 3 days. Lost about half a stone. It seems to help by starving my system to let it calm down. It is so painful.

Oh Alypaly you poor thing! You seem to be going through the mill at the moment.

CFSKate thank you so much. That book sounds interesting so may get it myself. 2 birds with one stone ( since Goldberg hypotheseses ASD and CFS have similar underlying disease processes).

Does any one get specialst CFS advice or attend a special unit ( such as the one at Barts?

magso i work in a pharmacy and a dry mouth is not a side effect os serevent at all.

Thanks Alypaly. I will look into it. It got much worse after I went on serevent so I blamed that. I a crown fitted ( poor fit) hense first going back to the dentist. My tongue feels mildly burnt all the time.

How is evryone else?

I rather overdid it at the week end ( cleaning ds room). Has anyone any idea how to improve cardiovascular health without the crash? I walk a short way most days when I am able ( slowly) but I still have a high HR ( I used to be fit).

sereevnt inhalers are a steroid inhaler and can give you thrush in the mouth. when you use it rinse your mouth with lots of water afterwards to stop the steroid from staying on your tongue

Thanks Aly I do and use a spacer. Hope you are feeling better than yesturday.