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!

like jaundice then

cant be good if it makes you yellow

hello rickymummy I know what you mean - my dad died aged 39 of stomach cancer and ever time I have a pain in my stomach I get panicky

I have also turned into a non drinker, cos its bad enough being knackered all the time, I cant handle a hangover as well. Just one glass and I suffer the next day... in my glory years I used to be able to outdrink my squaddie husband when it came to spirits...!

when I am not doing well my fingers are the indicator, they hurt so much and swell up, it turns out I have very mild arthritis in them, but its the fibro that makes it hurt so much, not the arthritis itself, if that makes sense.

Its worth asking them to consider if you have fibromyalgia, but its tricky as a lot of docs think we are making it up. One gp I saw told me I was being ridiculous when I said I woke up more tired than when I went to bed. I tried to explain the thing about feeling like I had been run over when I woke up, the pain and the tiredness, that eased off through the day. She completely believed it was impossible to feel more tired after a nights sleep.

So... I would have thougth that it woudl be a good idea to pursue a diagnosis, but you will have to pick your gp and how you talk to them. They get annoyed with us looking up things on the internet. You just have to have some good descriptions of what its like for you as they will think "tired" means normal person's tired, as opposed to chronic fatigue. Maybe take your husband with you....?

Celestial i have been doing alot of research into depression and CFS?ME and auto immune diseases. I have discovered that if you suffer from depression you have a dysregulation of TNF (tumor necrosis factor) in your system. If this is dysregulated you get production of inflammation and resulting pain.

Also you have a natural interferon response as a natural immune response and with illnesses like flu (NS1) it intereres with the interferon response and allows viruses in to your system.

I have had pneumonia and chronic parvo virus and interestingly enough in cats interferon 1 is mutated which is why they get parvo virus.

I just wonder if i can come up with a theory about depression and our bodies ability to cope with prostoglandin production (which causes us all pain and tiredness)

Gosh this thread has been shifting - it had fallen off my threads, so I had to go and seek it out.

Have just tried to catch up, but I'm afraid I'm not taking much in other than Aly you poor thing, you have it so tough, I stopped reading quite a few posts ago, but I hope something is improving for you and you are getting some relief.

Aly, I saw your questions about people's history. I have had quite a stressful life, nearly died from undiagnosed mycoplasmic pneumonia as a child and got it again a few years ago, but not as badly. I definitely feel the mycoplasma is connected to the CFS stuff somehow. I also have a seasonal element and definitely improve from mid spring through the summer and start to sink again come September.

I get the stingy skin too, usually on my back and down the outsides of my arms - its horrible. I used to only get it before I came down with a bug, but it seems to just come and go indiscriminately these days. I have it today down the outsides of both upper arems. I've never found anything that makes it feel better.

Helloo to all the new people on the thread, was it missingmysleep and rickymummy?

I have been doing ok-ish, but had a few odd episodes that were quite scary. The worst being really bad leg tremors while I was at my ds1's school play. My legs were shaking so badly I was struggling to stop the programme and my handbag from falling off, so it was clearly visible. The poor guy sitting next to me looked really worried and I was very . Still have the weird fuzzy parasthesia in my hands and feet and lower legs pretty much all the time as well.

I'm also having lots of speech problems again, ds2 keeps pointing out that I've said the wrong word, often a word very close to the one I wanted to say in sound, but totally out of context meaning wise eg trade instead of train. Either that or the word comes out completely jumbled or with the wrong ending. I am totally aware that I'm doing it though, I hear the wrong word and think - no that's not what I wanted to say, or I feel myself stumbling over and mixing up the letters, but can't seem to stop it.

Its very odd and frustrating and yesterday I ended up shouting at poor old ds2 for pointing it out. Poor kid, he just thinks is funny, he doesn't know how much its bothering me.

I have put the whole family on vegetarian omega and dha supplements and have noticed an improvement in us all in different ways in less than a fornight. The most noticeable changes have been in ds1 (who has ASD) but I have definitely noticed that while I'm exhausted from lack of slee (thank you dd for that) I don't have all the bone and muscle aches that usually make me feel like I simply can't face getting up. Am thinking we must have been pretty depleted to have noticed improvements so quickly.

Sorry for not reading everything, I will try and read more over the weekend. Hope everyone's bearing up.

Hi moose sorry you are feeling sooo bad. Interesting that you too had pneumonia.Your seasonal illness is exactly like mine too.My hands feel as if i have gloves and socks on all the time. Its weird.Glad you have found a supplement to help.
Another question i wanted to ask everyone was ...have any of you been on
clomipramine, amitriptyline,imipramine,citalopram,surmontil(trimipramine)anti depressants at any time as i am sure there is a correlation.

hope that question isnt too invasive.

Aly I was on amitriptaline 9 or 10 years ago. But I was put on this for pain relief for chronic ligament pain and sciatica in my back/pelvis. I hadn't made the correlation before but when I went back to work following that episode of illness my approach was different. I was more exhausted than usual, more irritable with things, much less patient and also less eager to offer help to collegues bacause It was too much effort that I could afford. I used to really beat myself up about it. "Why am I like this"? And that was an approach I never had before then

I'm also affected by the seasons and have frequent pins and needles on my hands and feet. I'm not affected by painful skin sensations although I do have really bad skin on my hands and suffered with scalp psorisi although thankfully that has gone now!

psorisis doh

Scalp psoriasis Celestial? my Mum gets that. Very unpleasant :(

thanks for your input,I am beginning to piece things together and i want to ask my rheumatologist about AD's and CFS/ME as i am beginning to think that it is the AD's that have triggered these illnesses as a relatively unknown and poorly reearched side efect.

How long were you on it for Celest?

i have put it out as a seperate thread for those who have not joined this one.

Hi Aly, I was on citalopram for just over 18 months when ds2 was 6 months old and my Dad was dying.

GP suggested putting me back on them for anxiety recently, but I declined and accepted beta blockers instead. He wanted me on 40mg twice a day, but I prefer to take them as and when needed instead and the anxiety dramatically reduced the week after the GP appointment anyway as it was all to do with ds1's assessment and diagnosis. I went to the appointment with the full intention of asking to be referred for investigation relating to my CFS/ME type symptoms, but as soon as we started talking I knew there was no point with that particular doctor. He basically offered Anti D's and counselling.

My Mum has just been put on Amitryptyline for suspected Fibromyalgia after an extreme soft tissue and ligament reaction to her hip replacement operation.

I wonder if somehow the combination of ADs and one or more different trigger factors such as mycoplasma or traumatic injury somehow causes the auto-immune response? Could the way they affect the uptake of seratonin maybe cause the body to stop handling it efficiently itself, so once the person comes off ADs, they can no longer regulate their own seratonin, thus producing the depressive and cognitive elements of ME and other auto-immune disorders? Its definitely food for thought.

I was only on them for a few months Aly. Not very long because I ended having to have an epidural and bilateral steroid injections for pain management which worked brilliantly.

In depression there is a dysregulation of TNF(tumor necrosis factor) and this induces inflammation and can cause Alzeihmer's amongst many other things

TNF is inhibited in RA,MS,lupus,diabetes and respiratory diseases, and systemic sclerosis
On top of that TNF is inhibited by tricyclic anti depressants, citalopram,fluoxetine and ssri's. If TNF is inhibited it leaves you more open to inflammatory diseases.

Also IL6 is produced against pneumonia and smooth muscle(heart,blood vessels) produces IL6 as a pro inflammatory agent. AD's inhibit production of IL6 and IL-1β which is why we might have struggled to get rid of pneumonia. And it also causes higher blood pressure.

Also sleep ios regulated by TNF and IL1 and i certainly have had massive sleep related problems for many years.

Also tricyclic AD's inhibit the bodies own natural interferon in T cells and if you inhibit interferon you inhibit the work of macrophages which are you bodies so called 'killer cells' that attack bad bugs.

Sorry this has gone off at a bit of a tangent but i feel i need to put my theory to a clinical rheumatologist. I just want to see if i can find a root cause for our problems as everyone just seems to throw tablets at all this and i now want answers.

Maybe i am hoping there is a cinical researcher out there.

clinical not cinical

ha ha ha maybe a cynical researcher is what we need

I had citalopram for PND, for a couple of years, it was after I had fibromyalgia (I think) but before diagnosis

they gave me amitriptiline for the fobro but it gave me 100% insomnia, so I stopped after 3 days after nearly crashing on the motorway. DH was away and I was home alone with 2 small kids and a job, so I had to bin them.

I am pinning my hopes on masses of rest curing me, I have just had some gynae ops done, and have been signed off work for 6 weeks. I cant life ANYTHING for ages, so DH is home (for once the army has come up handy) for 5 weeks to be Mr Mum. So no work, no childcare, no housework. Shame it hurts so much, but tbh that is worth it for a chance to rest.

I am going to be very interested to see how my fibro sypmtoms react to me getting all this rest over the next month.

I am so tired! I'm still in bed, how bad is that?! Poor Dd is downstairs watching tv...must get up in a mo. I really must.

I can't stop thinking about this now - I am going to phone the doctors tommorrow and make an appointment, because I am sure this is what I have. Can't believe it, after years of thinking that I was just crap!

I can even remember when it started, when I had a terrible sore throat about 15 years ago. All my glands were up, and I was tested for Glandular Fever but it was negative. Then, a few months later, I fainted at work, and had severe stomach pain. Rushed to hospital, but it turned out to be swollen glands, and the blood test showed I was post viral. Within the next 2 years, my glands kept swelling, I lost about 2 stone (I went from a size ten to an eight), was sleeping 12 hours a night, had no social life, but still felt rubbish. Quit my job, thinking it was that, and moved town. Gradually improved and, other than two very tired pregnancies, and generally being tired, little stamina etc, was ok.

Then, my Dad died, shortly after DS2 was born, and it all started up again.

I am back in bed now. Tried to dos some gardening, but I am aching today, so DH has taken the children to the park, and I am having a sneaky rest.

good luck at the docs. Try to make sure you are clear in your descriptions, ie give examples of things you have to do to accomodate your fatigue, cos if you just say you're tired, they often wont understand the severity

sorry you are feeling so horrible rickymummy. It does sound like a post viral fatigue. Hope you get some answers or at least some blood tests.

I agree with missing. even write it down, so that you dont miss anything out.

Hello again, I haven't posted for a while.

waves to Celestialstarlight, I saw you on the other ME thread.

magso and moosemama about ADHD and ASD and CFS - I think this is a new website from Dr Goldberg v-1667.easyco.net/

moosemama - in the book Lost Voices there are two sisters who both got ME after having mycoplasma pneumonia.

TigerseyeMum - the XMRV thingy has not been disproven at all, there is more evidence coming out all the time, see mecfsforums.com

I remember that someone in this thread was talking about Sjogren's syndrome - I recently saw this discussion about CFS and Sjogren's phoenixrising.me/forums/showthread.php?10629-CFS-linked-to-Sjogren-s-Syndrome-weird-auto-immune-disorder

alypaly - your post reminds me about the Etanercept CFS trial, also I have read that interferon alpha is decreased in CFS.

Hello all.

I posted here about the depressing cycle of illness an exhaustion that is severely hampering my life (especially my career) at the moment. Just looking for any advice or support or just people who understand, I suppose, as feeling really low.

CFSKate, forgot to say on the other thread - doc recommended selenium (sp?) and B vitamin complex, but didn't really explain why. I have had numerous blood tests in the past which have all come back fine, so no idea what is going on, really...

Hi Ali. I've just read your thread, and it sounds so familiar. I've got an appointment with my GP this afternoon, and I'm actually quite nervous. I have been with the same symptoms for years, but blood tests come back clear.

I am just so tired of having to explain to family/friends/work that I am tired/exhausted/hurt. I just want a medical opinion to back me up. I can almost deal with the tiredness etc, if i know that I have to pace myself, and that the symptoms are not the sign of some terminal illness, so i just want that reassurance.

Have you tried working part time? It seems to work for me. My job is stressful, but I can handle 4 hours a day, and then have energy for housework, playdates etc.

I'll let you know what happens.

Hi all. I'm exhausted! car broken atm and having to walk everywhere and it's killing me!

hi rickymummy....just started a new part time job but have come home every day with massively high blood pressure. Dont know if its my meds ....plaquenil o=r the job but BP was 180/108 tonight ...bit scary so i have made appt with my own doc