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!

moosemama - do you still have the link for the youtube video for the MS woman with lesions in the brain stem? I'd really like to see it. Sorry it's taken me so long to reply about the brain scans. I've read this about MRIs

"Neurological Testing: Improved MRI technology has shown that about 60% of patients with severe cognitive impairment had white-matter changes (spots/lesions on the white matter) in their brains that correlate with cognitive flare-ups. The lesions resolve as the severe cognitive-impairment flares resolve. This does not correspond to anything that is known in medicine. Radiologists have compared these changes to those happening in HIV patients with encephalitis, but Dr. K. stressed that CFS is a different disease than HIV." from thoughtsaboutme.wordpress.com/2011/04/22/dr-andreas-kogelnik-re-evaluating-chronic-fatigue-syndrome-and-immunology

I've also read about SPECT brain tests showing decreased blood flow in the brain.

Chipstick I think about 60% of pwME have tinnitus. I know I do, and it ramped up with the sudden onset of symptoms.

Dinamum, you are right, I have to respond to your post. The LP is a commercial enterprise that guards it's web reputation carefully - every relevant newspaper comments section, every forum where ME is discussed, an LP avocate will pop up. People who tell a negative experience of LP find their posts removed. I believe we have crossed swords elsewhere on Mumsnet?

LP, a neurolinguistic programming system, is useful in depression, which is often misdiagnosed as ME/CFS. A three day course costs around £600. You get telephone support on top. There are those that swear by it, and those that hate it, including some that really tried to get well on the LP treatment.

I have a bookmark to a site called LP doesn't work for me, which gave many stories about how LP failed to make pwME better, or worse, aggravated the illness. It has moved, and is not available on the redirect. I know Phil Parker, the unqualified inventor of LP, works hard to protect his web presence. I shall email the owner of LP didn't work for me and see if I can find out what happened.

Moose I'm jealous! When mine were small we had a camper van, only a VW on a transporter base. Great to be able to pull over anywhere and be at home! Mine was a high-top, I couldn't get it into the local supermarket car parks, and so I swapped it for a car in the end. What adventures we had in our camper... :) :o

Thanks for the interesting link to Dr Kogelnik's talk. Off to read it through.

Happy Tuesday, all xxx

CFSKate the youtube video is . She has done quite a few that tell her story bit by bit. I will have a look at your link a bit later.

Clouty - ours is a late bay tin-top vw. Really tatty these days but very much part of the family and well loved. It is vw number 5 (I think - could be 6 ). Dh used to restore them as a hobby before we had the dcs. We love having a tin-top as we go to Ireland every year and you can't get in any carparks or beauty stops etc if your van is over 2.0 metres high. Its backbreaking cooking for a family of 5 in there though!

Clouty for every failed LP user I can double you one that is leading a normal healthy life - but each to their own. Shame as many of you could be feeling so much better if you would give it a try.

There is also a LP worked for me site as well!

You are all entitled to your own opinion but stating incorrect hearsay facts can keep people ill who could be feeling better - let them make up their own mind rather than making incorrect accusations.

There is no way I am an LP advocate - I have not been in contact with anyone involved with the LP organisation since I walked out of the three day course in 2007. I did not need a follow up consultation. The reason is so many of us pop up is that we can see the incredible difference it has made to our lives - the difference between hell and living but the choice is yours. (I do know that people on my course had been so ill that they could not afford the course so the practioner said come anyway and they did not pay so hardly money making)

If you wanted to be slim would you ask a slim person or an overweight person how to be slim. Do you ask advice from people who got better or people that stayed ill.

I will not post again as I do not need to hang around ME threads too busy doing things! just did it this time to let those people know there is help out there for you.

A friend of mine recommended the LP to me a couple of years ago as her Dd had used it (not for ME) and liked it. I looked it up with an open mind, but there was no way I could scrape together the £600 it would cost. There is also the opinion that it works less on older people...I'm 47 and even if I had £600, I doubt I'd risk losing it on something I'd be unlikely to benefit from.

Luuurve your new name Cougar

Why thank you ma'am! you can take that credit, it belongs to you! mwah!

Oh and when I believe it's really going to happen, it will change to...SoloIsACougar...or maybe soloISaCougar actually, I'm not going to prance off, because I'm bloody knackered and have a king sized headache.

You can slink away in big cat prowess...purr. Hope the headache gets better soon. I had one bugger of a migrane on Saturday. My sympathies

just marking my place, havent had time to catch up....been so busy...asking me to do over time every day[hmmm]

Clouty what is pwME? Thanks

Magso I think pwME might be short for people with M.E.

Thanks celestial.
Dinamum thank you for mentioning LP I wish I knew more about it. Is it possible to read up about the process (for free)I can see that NLP (if I understand it correctly) would help in some ways ie with acceptance. I believe I have improved since I learned to accept, pace and not push.

Interesting that tinitus is commonish in CFS ( getting more convinced I have CFS and for a lot longer than the PVFS) Do other people have back pain? I've had it for years so have tended to blame the parasthesia on the back ( anatomically unlikely for back problems to cause parasthesia in hand and foot concurrantly). Also I fiind tight clothing very uncomfortable at times ie the band of a bra because I often have this unpleasant tight sensation across my chest ( different to the tightness of asthma).Is this a symtom of CFS?
Does anyone know if mitochondrial damage/ disfunction occurs in most severe illnesses? I am wondering about mechanisms. I would have thought severe illness would stress most biochmical and physical mechanisms. (biochemistry has always been a mystery to me)

Magso, I have pain in my hips and lower back - sacro-illiac (sp?) and also hate wearing anything constrictive. I change into a looser non-wired bra as soon as I get home after being out and only ever wear a proper over-the-shoulder-boulder-holder when I am going out. I am a 34 gg/h so I really need the support, but I feel as if my bra band is crushing me even if its loose. Its not a good look, but I really can't bear it, so have no choice.

I also have a persistent problem with my lower left ribs. The pain is so bad it keeps me awake at night and at its worst has me crying in pain. I initially put it down to costochondritis, as it came on after a chest infection and I thought I'd done it coughing - but its never got any better and its been 18 months now. It does ease of slightly for a while, but then comes back with a vengeance.

You should get checked out properly, as the tightness around the torso can be related to MS. It called the MS hug and it does sound very similar to what you've been experiencing.

No good asking me about biomechanics etc at the moment, my brain seems to have gone on holiday without my body.

I get sciatica and hip pain which started whilst pg with Ds 13 years ago and never left me. That started before the ME though...

I'm off to be weighed this pm and I'm considering making a docs appointment. Probably wont bother though...yes, I know I should, but I hate wasting his time.

Oh I have a lot of trouble with rib pain/costchondritis put it down to the asthma - and needing resuss ( after which it got much worse and can have me in tears too) - although its been troublesome most my adult life . Hip pain too. I am on the wrong side of 45 so would probably be laughed at if I mentioned MS to my GP - or more likely offered ADs - again.
Solo do see your doc! I am building up to a visit but havent been able to get one recently.

Tis very interesting regarding tinnitus. We are always led to believe tinnitus is simply because of ear damage due to prolonged noise.

About 10 years ago I developed sacro illiac pain. It was more right sided but it also affected the left side at times too. It affected my ability to walk and weight bare and I was in constant pain and agony. The associated sciatica was also unbearable. Fortunately a while back I had a course of epidurals and bilateral steroid injections for pain management. Now apart from the very odd flare up I am relatively pain free. My last course was about 6 years ago and I think since that time I have only been troubled with my back a few times and one of those times was when I was pregnant and another following a car crash so I'm thrilled that this is no longer a major issue in my life and If I do feel a twinge I take painkillers.

Oddly enough it was after the onset of my back pain that I noticed a deterioration in my general health and energy levels. I didn't realise then that it was probably CFS/ME.

My hip and sacro illiac pain was exacerbated by pregnancy each time. I have had it greatly improved by osteopathy in the past, but its just so expensive to have a whole course of treatments.

I had SPD in my first two pregnancies, bad enough to pretty much immobilise me. I had a course of osteopathy after ds2 was born and hardly had any spd with dd, just a mild case at the end of the third trimester.

I think my hip might have been aggravated by having my leg in a cast for around 9 weeks last summer. It was one of those hulking great aircasts and I could feel my back and hips getting more and more out of alignment the longer I had to lug it around.

I really should go and see an osteopath again. We have a fantastic one almost opposite our house, who has treated me with great results, fixed dh's labrynthitis and also cured ds2's colic. The man just about has Godlike status in our household - in fact dh wants to retrain as an osteopath someday because of him, but its not likely to happen until the dcs are all grown up.

I've made the appointment. It's for next week.

As I understand tinnitus, it has nothing whatsoever to do with hearing or prolonged loud noise and I thought it was a noise in your head, not really your ears. Could be wrong of course.

Yep.
Sounds like me and I was dx in 1997 with ME.
Having a "bad" period atm but hopefully it will pass.
xx

Cougar great new name! Tinnitus can be related to inner ear damage or damage/inflammation to the auditory part of the brain. That's my understanding, that both or either can be the cause. It can be seen as all one organ.

Moose are we twins? I have the rib pain too, but perhaps not as bad as you. I hate tight clothing of any kind too. I can't stand bras - luckily I am not stacked (though I used to wish I was) which means I don't have to bother with them. I live in loose cotton clothing, mostly pyjamas
Is your VW a split-screen original? They are becoming collector's items - but your chap knows all about that I am sure. I should have changed mine for a tin top, we missed it so much when it went. They're not bad on petrol, too.

Years ago, when the children were small, we had a LHD poptop for a bit. We sold it to some Aussies that were off to do Europe. Orange, it was. It was pretty tatty but they didn't mind.

It seems we all have this constriction in the ribcage area. Another weird thing I have is that sometimes my bottom left rib seems to jump out of it's central socket in the sternum. It's awful, I have to get it back in by manipulation and moving round as it stops me thinking of or doing anything else until that is achieved. Ouch. Oh yes and I have backache.. but on the bright side, I had sciatica a few years ago, but I've been free of it for some years now.

Re tinnitus. I developed out of the blue in2008. Never do loud music or ipods. I was ironing one day and my ear just started ringing. Wish i knew the reason. If it is ear damage i just dont know why it happened, unless i had a painless ear infection that damaged my ear . Im lucky (if you can call it luck) that its variable. It can remain extremely quiet for days on end.

Sorry to hear you are having a bad period at the moment. I know mine always flares up when I'm stressed about ds1, its definitely not a good combination. Stick around - its a great place to offload with people who actually understand - a bit like the SN board really - in fact there are a couple of us off the SN board on here already, so you're in good company.

Clouty, believe me, you would hate having a large chest - its the pits. Not only its it uncomfortable, but there's only one way for them to head as you get older - south! I live in jersey v-necks and joggers at home these days. I have to get changed to do the school run though. Fortunately dh does most morning runs, so its only the afternoon one and I change back into my slobs as soon as we get back.

The van's not a split screen, it's a late bay window - splitters are £££££s and then some. We have had some beautifully restored campers over the years. The last one we restored was an absolutely perfect Westfalia that we bought as a rolling shell and restored up to show standard. We were restoring it right through ds1's first year, but decided to sell it, as it not only would it have seriously devalued it if we used it normally, it would have broken our hearts to see all our hard work destroyed. That's when we bought the one we have now - so we've had this one for 8 years!

This one is fantastic for chucking the kids and dogs in and not having to worry. It came as a newly resprayed shell, with no seats or anything, so there's nothing original or valuable to worry about and we can happily let it get covered in mud, sand and dog fur etc without a care in the world.

Dh's favourite colour is orange - we've had three orange ones - but this is neptune blue, which neither of us like, so we've applied the obligatory hippy flowers over the rust some panels. Shh, it also has denim tie dyed seats and curtains which we did ourselves!