CFS / ME suffers thread: Support, chatter and (caffeine free!) chocolate.

[SirBoobAlot]

As prompted from another thread :) Welcome, one and all!

[MrsSnaplegs]

magso try asking your GP to refer you to a podiatrist - mine made a huge difference to my foot and leg pain pre-pregnancy with some orthotics as my toe and ankle joints weren't functioning properly, this in turn has helped a little with my balance. Hoping once I get back to rehab I can start working on my core stability again.

Personality wise I am an overacheiver, thrive on high stress/busy situations, hate sitting around being bored DH has now learnt he has to tell me to stop and to make me rest I am better at pacing when I have someone there to tell me to stop! Never suffered depression until I developed chronic pain and then it was due to lack of pain control!

[SirBoobAlot]

They do say that certain personality types "attract" M.E., and if we were the control group that would certainly right true Guess its a case of people who are not willing to stop, and want to do everything, and do it well, are those most susceptible to falling ill.

Personality: Academic, keen to please, desperate to be liked, have to get everything perfect, curious, over-hectic, self critical.

Main symptoms: Dizziness, pain, lack of balance, eye trouble, pins and needles, brain fog, headaches, fatigue, insomnia, confusion.

Could go on forever, really!

Should also add that I have Borderline Personality Disorder, probably. As although not related to the M.E., I'm sure there is a cross-over at times, ie, if my BPD is bad, I get more confused; I get more confused, I don't sleep as well; I don't sleep as well, my pain gets worse; my pain gets worse, I get more depressed... Etc.

Have had a very busy day. Although I was sat down for most of it, it was very draining emotionally and mentally. And my pain levels are so high recently. I try not to complain too much but feel I can here

[MrsSnaplegs]

One thing I have found that has really helped me take some "formalised" time out is a system called pzizz. Designed by an ex marine who knows the value of a refreshing power nap. Google pzizz. The system is expensive but you can download it onto iPhone or iPod for about £5 ! Takes a couple of goes to get used to the voice etc but has been really useful for me. I use the energiser one during the day for half hour on really stressful days when I need a break but the sleep package may help those with insomnia - for a £5 worth a try!

[KatyMac]

Want to join in -but too tired now; tomorrow

[MrsSnaplegs]

katymac welcome we look forward to meeting you later!

[MrsSnaplegs]

pzizz link

[KatyMac]

I was diagnosed in the Spring of 95 so that is 16yrs I have had it (whether it is CFS or not I am not sure)
at my worst I was bed ridden & DH carried to to & from the bathroom

But I have 'been in remission' for years; I live a quite controlled life but am able to function pretty well - I work 50hrs plus a week; but if we are being honest I have constant pain

My long bones hurt most of the time, my joints occasionally, my hand & feet all the time just now with cramp & pins & needles. When tired I get random visual disturbances & could sleep for an hour every lunch but I never get the chance, so I end up asleep at 6 which is useless unless I am going out later.

Diet has made a big difference to my life as have pain killers

I 'also' have IBS, a partial prolapse, arthritis, some allergies & I get mouth ulcers. My brother has RA & my mum some lupus symptoms - I think there is some genetic connection - which I have mentioned before

But life is good atm

[CrazyPlateLady]

Hi Katy, going to highjack but how is your DD? Is was her that had the vision problems wasn't it?

I also have IBS (been much better since I was pregnant the first time though), endometriosis and tinnitus. In my books it says that people with M.E. often have these things as well. No idea why though!

[KatyMac]

I don't have tinnitus but I do have eczema in my ears (the only place I have that)

DD is fine thank you; it came back 10/10/10

[CrazyPlateLady]

My tinnitus is so bad sometimes I want to rip my ears off. Bloody annoying as hell. What is it with all these illnesses that go together where they can't actually do sod all about them!? Grrrr.

Glad to hear your DD's vision is back! What a relief.

[SirBoobAlot]

Apparently it can lead to heart scaring as well

Today has been a difficult day. Am in so much pain, I was crying last night, and that hurt too. DP was really helpful, but still.

Doctors appointment tomorrow at least, need to write a list of things to talk to them about. Then collecting the keys for my place :)

[MerryMarigold]

Hi. Just seen this in 'active'. Thought I'd join in briefly...I have 3 kids and had CFS for 10 years. Improved in pregnancy and even while bfing, but generally came back after. Also got depressed a few years into it, but only started some meds a couple of years ago.

Recently did Lightning Process and it was fantastic for me. Made a huge difference and helps loads when I do it regularly. Off anti-depressants and CFS been fantastic - no symptoms since (though it generally is very good in Autumn/ Spring and less good in Winter/ Summer). I've even started an exercise class, which I haven't done for over 10 years.

I'd definitely recommend looking into the LP if you can. I was quite sceptical, but knew 2 people who had done it, very down to earth types, and had v good results. One of them had Lupus, the other CFS. Thought I would give it a go as I didn't really have anything to lose except money and hoped if it worked it would certainly be worth the money. I'm very glad I did it! It's tough being a Mum with CFS, I felt like I was missing a lot with my kids, and struggling to feed them and clothe them in clean clothes let alone do things like teaching writing/ numbers etc. Was also finding patience with them v hard...when you're finding it hard to move and think and then kids are screaming...arghhhhh. I still feel like I am 'catching up'. The house is a tip, my ds1 is a bit behind in school (though he only just started, bless him) and the teacher basically said if I did a bit more with him it would help a lot.

If you have any qu's, I'd be happy to answer. Sirboobalot, I've seen you around a lot (love your name and v memorable), had no idea you were a CFS person.

[SirBoobAlot]

I was signed on to do the LP at the young persons retreat just before I found out I was pregnant. So glad it has been beneficial for you, Merry :)

[MerryMarigold]

When did you have your baby? My twins are just 2 (I did it just before they turned 2) and it was a good time. I still find it hard to prioritise doing the exercises, but easier than when they were younger!

What is the young person's retreat??!!

[SirBoobAlot]

DS has just turned a year :)

There is a young persons LP which is for under 18s (I think) - because I was 16 when I got ill, I was seen by a child and adolescent specialist, and that's where I was referred.

[SirBoobAlot]

Sorry just a question to those of you who have mentioned IBS - possibly outing myself from another thread here, but have any of you suffered any rectal bleeding with it? I have a doctors appointment tomorrow, and hearing the link has made me wonder if that's whats going on.

[MerryMarigold]

I have IBS, but no rectal bleeding. I had bad tearing with ds1 and had some then for a couple of months, but certainly none as a result of IBS.

Wow, you must be so YOUNG, Sirboob!

[SirBoobAlot]

Ah thanks for that. Sorry for over-sharing Had no tears during birth. Started a few months ago, left it for a while as I wasn't sure if it was my period or not (and was too embarrassed) but its got worse. Finally bitten the bullet to go see the doc.

Nineteen, Merry.

[KatyMac]

[shh....piles?]

[SirBoobAlot]

No, doesn't feel like piles. I had those badly just after DS was born. Its not the same kind of pain, or bleeding.

Sorry Its on my list of things to ask the doctor about tomorrow, so will stop telling you all about my bum now

[magso]

Hope the GP can help Sirboobalot.

What do others drink when its cold? I used to drink hot water with a splash of cold milk but have changed to red bush tea which says it is caffeine free. I like it but wonder if is harmless? I struggle with herbal teas!
Has anyone else found a method to reduce cramp and/or malagia? The heavy ache in my thighs keeps me awake but I am not sure if paracetamol helps? It is always worse when I do/stand more but I do not want to be held back!! Does keeping warm help? I get cramp in my feet and calves both when I am up and about and when asleep. Any drug free solutions! I have tried eating loads of bananas!
Thanks for the hint about orthotics - I already have some but as they predate my bad patch perhaps its time to revue if I can find the fees.

[MerryMarigold]

I think red bush is ok. I hate all herbal teas, except green tea and jasmine tea. I went through a red bush phase! A nice hot drink is a lump of ginger in hot water, very warming.

Sirboob, woweeeeeeee, you have so much of your life ahead of you. Coooool. Hope it went ok with the doc today and he has referred you for endoscopy. Not that pleasant but should figure out the problem. Don't be , if you can't talk about rectal bleeding on MN, where can you?! I've seen a LOT worse...

[SirBoobAlot]

God I hate doctors. My usual GP is away for a few weeks, so saw a locum. Horrible, useless cow. She told me that I shouldn't be in there complaining that I was in pain if I was "stubbornly refusing" to stop breastfeeding. I mentioned the WHO recommendations quite curtly, to which she replied "Yes, well no one actually does it for that long. Do you want my help or not?"

Then I asked for a referral to the OT and to an adult ME specialist as haven't seen once for a year and a half now. She told me that I should book separate appointments if I have numerous things to be there for.

She then noticed my mental health history on the medical records and said, "Ah, that will be why you're in pain. Its that time of year for depression."

Then I told her about the bleeding. She said she'd need to examine me, then complained about having to help me climb up onto the table. She couldn't feel anything, so has arranged for blood tests. Then asked me if I had been feeling tired at all recently. I looked at her blankly, thinking she was being ironic, and said "I have Chronic Fatigue Syndrome". She sighed at me, and said, "Well I mean exhausted, rather than just a bit tired".

I am so so bloody angry.

/rant - sorry. But it was just her lack of understanding on every single thing! I wanted to both shout and cry at the same time.

[MerryMarigold]

Oh my goodness!

What has breastfeeding got to do with anything? I felt better breastfeeding. I declined both times when I stopped. I bf'd for 20 months this time.

What has depression got to do with pain? Oh FGS.


Grrrrrrrrrrrrrrr...I HATE doctors. You are lucky if you have a good one most of the time. Go again when he/ she's back, I guess.

I don't know what a blood test will show. I thought an endoscopy would be certain for bleeding. Oh well, I am not a GP. Although it seems every time I go I have to tell them what I want.

[SirBoobAlot]

Because if I really wanted to stop being in pain I would stop feeding Am tempted to make a complaint. Or at least post her the WGO guidelines!! I have heard its better whilst you're feeding - I put my hands up to admit that is one of the reasons I am so passionate about continuing for a while yet. Selfish, possibly, but DS wouldn't stop now anyway.

I think she may be checking for anemia. She appeared to know shit all about breastfeeding or about ME. I shan't be seeing her again.