Spoons! Support for those with chronic pain & fatiguing illnesses

[Grockle]

Spoon Theory here

CrapBag I think you should definitely ask about being referred to a specialist. You've been diagnosed as having CFS so surely it is your right to be referred to the correct person!

Can't say whether it will be really helpful or not, as different hospitals seem to have very different approaches, but I'm sure it's worth a try :)

Gallfrey, i too was told i was depressed by one neourologist, i have been screened twice for MS been treadted for migraines the whole job lot, after collapsing one xmas and was given steriods which didnt help i asked if it could be CFS. I didnt quite believe it existed myself at the time, but i had run out of options... i was assessed during a "crash" which was good, and for the 1st time ever everything they said fitted me, it wasnt "WELL ITS NOT QUITE THE RIGHT SYMPTOMS"

As for the lazy thing every time i take myself off for an afternoon nap i think god you lazy get........ or i turn down the opportunity to exercise, i think my ME is a bloody good excuse to avoid it because as much as i used to go to gym and aerobics etc i never really enjoyed it...

nevertheless last weekend i spent the majority of it and the beginning of last week in bed as much as possible.... why ? because i cut the front and back lawn ( not very big at all) and hoovered the car...... so i either am very very unfit or ill......

i am trying to loose weight and the lack of exercise is a big issue..i domnt eat crap really, we might have take away once a month....if that, i do make meals every night usually freshish ingrediants (unless i have crashed then i dont move from bed) but i cant exercise.... my weight has gone up 2 stone in 2 years. So i have gone in a very different direction and bought the PAUl McKenna think yourself thin book... i would love to have proper hypnotherapy but i cant afford it..interestingly when i listened to the trance yesterday i was very relaxed, something i find hard to do im so tense all the time!! Lets see what the outcome is. As anyone else tried hypnotherapy??

The odd thing is that I've had a couple of episodes where parts of my body have become numb, in 1997 I had an MRI and evoked potential tests and I was told there was a strong possibility I have MS, but then they just said I had cervical stenosis and just left to get on with it.
Then this other thing happened in 2010 and again I was told it could be a number of things MS included but just left to get on with it.
I have also put on 3 stone since then, I just assumed that it was because I was so inactive now compared to when I had horses (I was a professional groom for 13 years) and worked for an Olympic dressage rider so it's not like I have never been active.

I have tried both the Paul McKenna hypnosis cds and books the I can make you thin and virtual gastric band and neither of them have affected me at all :(

I also have this fear of going out somewhere if I know I might have to walk far, I find I'm using my wheelchair more and more and it's then impossible to take my 2 yr old out then. I'm hoping for a social services assessment soon so I can get some help.
It's getting to the point where I don't leave the house unless I know I don't have to get out of the car.

oh that tape sounds interesting BelleshellI am working on normalising my sleep in the hope that my weight (never an issue in the past) might normalise and everything else start working normally. You never know.Perhaps there is a send yourself to sleep tape.
Galifrey that sounds an unusual set of symptoms to start CFS off. but than i suppose the original illness may have been the triggar illness rather than CFS at that point. Oddly it was a chiropractor who picked a problem in my lower back -(I had a brief period of leg control issues after injury that has left the triangular joint in the s/l area- don't remember it's number pushed backwards my old GP was never interested.

even the doctor on the DLA appeal panel said that it was odd to be given a diagnosis of fibromyalgia with my symptoms and that isn't how it affects people be coming on suddenly like that!

I've also put on a stone in a year. Used to exercise a fair bit but can't do anything now.

I tried the 'Hypnotic Gastric Band' book and CD (Paul McKenna) ...didn't do much for me and I was sure I would be a great candidate as I used to be well into my visualizations, etc.

Then my brother mentioned that wheat contains a chemical the stimulates appetite and it was like a lightbulb went on. Decided to just replace all wheat with other carbs, and then about three days later stopped eating grains almost completely. I'm over on the pale/primal thread now. Love it. Weight is slowly coming off.

Thats interesting building. I have heard it is good to give up all carbs ( but not the complex ones). I have weakness for potatoes (and other root veg) so it could be a challenge. Good its working for you. Is the pale/primal thread a version of the stoneage diet?
I went to my beginners pilates class today for the first time in a month and coped better than usual. I expect to be tired and sore for a few days. I am hoping the ribose will help me recover faster. We'll see.

Totally with you on the not ill just lazy feelings. Every bloody day. For some reason this latest bout of depression seems to have totally wiped out my self confidence so I'm totally convinced its a mistake and I'm just lazy and a complete failure at life in general.

Stupid thing is I know being this tired and sleeping 18-20 out of every 24hr isn't normal. That's why I went back to the GP. I also have several pieces of paper showing I'm hypothyroid.

My chiropractor has advised me to cut out all dairy and grains, I can eat fish, eggs, meat, chicken, fruit and vegetables. Still hard to find anything to eat in the house! I have lost my appetite recently so haven't been eating much at all.
He said it's to reduce inflammation in my body, I also have lots of supplements to take too.

I tried various supplements. CoQ10 was great for about three weeks, made a huge difference much as caffeine does now

I also tried a combination that is supposed to help the mitochondrial processes, called Mito Guard...it had D Ribose in it. Also great for a few weeks.

Have stopped taking anything now as I think it is mostly about exercise intolerance for me. If I take things that make me feel 'artificially' good, I overdo it. I just can't do much...as long as I limit my physical activity, I cope okay.

But now I am tempted to try these again, though some were very expensive,

I saw a GP who recommended I give up wheat and dairy. It was the only time I saw that GP though and it was totally out of the blue with no explanation or advice (she was also quite dismissive of the CFS so it somewhat put me off)

I haven't tried it although I am finding myself less inclined to eat a lot of it anyway. In particular my tummy has got really sensitive lately :( I've never been one to follow diets so I'm just trying to make positive choices when I'm up to it. I do actually really love healthy food (one of my childhood nicknames was Fruitbat!) but I like junk too! But the latter has become less appealing since my body got so much more sensitive. For example I pretty much can't handle any fizzy drinks at all anymore, they make my tummy hurt so much I just don't want them.

I have read that you are more likely to have a poor diet if you have low self esteem, I think that is really true, I don't value my body at all so I pay no attention to what I put in it.

I don't give a monkeys about my weight ATM though, I just want to eat nicer food that makes me feel better.

Today has totally worn me out.

Has anyone tried GET (graded exercise therapy) for CFS?

I asked my GP yesterday if there is anything she can refer me and she said there is a new thing set up in my city that she can refer me to. She said it is linked to the people I saw before (who were not based here) but as I haven't seen them for quite a few years then she can refer me to them again. Then she said it is for GET. I have read a little on this and it seems quite contraversial for CFS and the general opinon seems to be that it doesn't do any good. Any thoughts?

Well that was annoying, just had a call from Adult Social Services about getting an assessment for a carer/pa type person as I am really struggling. Spoke to a girl on the phone for a while and she was asking me questions about how I get on around the house and going out, personal care etc anyway she has caught me on a good day where I'm not on the verge of tears about how crap my life is and I really didn't make myself clear at all at how difficult I find things :(
I did say on my original referral that my husband does most of the cooking and cleaning etc as well as working full time and looking after our 2 dd's and helping me in the bath and shower, undressing me and helping me get dressed again. It's causing our relationship to really suffer. The other week I was so down about never going out anywhere and being so isolated and lonely.

Sorry pressed send too soon, anyway I have an OT assessment booked for the 4th July! That's the next available one they have. Apparently it has gone against me that I've been struggling on my own for so long and that I have a husband that helps me.
She has given me a number in case I get any worse and I need a more prompt visit.

GalifreyYour husband could ask for a carers assessment (although I am not sure if that is only people caring for those already getting DLA). July does seem a long wait. I get some help caring for ds ( who has sn), and it took about a year from the decision to assess to getting help.( Ds gets 1 night a month in respite care which is lovely for us all as they usually take him out if its a week end and do things I cannot do and I can jst sleep).

Crapbag I have not done GET but I know others have.

Two different votes to win money for ME research
here and here

gallifrey don't give up with SS. My friend has chronic health conditions (I am not sure exactly what she has been diagnosed with but I think its Fibromyalgia and CFS). Her DH worked full time, saw to the kids and was doing all the housework. He was having loads of time off work. In the end he was reaching the end of tether and it was taking its toll on both of them and he phoned SS and said he just couldn't cope with it all and they gave her a couple of people who come in and do her housework, plus she gets money paid to her so she can pay them and she pays her mum as well to come and do bits for her.

Keep on at them and phone them when you are really bad or get your DH to do it. Don't let them fob you off with that fact that you have been getting by for so long.

Voted CFSKate, one was done when you linked to it before, just done the other now. Shame to see that the previous one I voted has slipped to 2nd place now.

just spent last 4 hours in bed............i hate ME!!

Hello all,

I've had a horrible week or 3 & am a big mess. My occupational health meeting was ok & the dr was supportive & has sent a report talking about my complex illnesses (stating Fibro, Menieres, CFS & lupus) & needs. We'll see what happens when work receive the report. The dr made me laugh though, stating that I am definitely not depressed. I didn't argue because I don't want MH issues to be reported to work but it just shows how well I can hide the truth. I have been very low for weeks, suicidal at times & not in a good way at all. But, I am 'coping well & definitely not depressed'

I now have an emergency appointment with the MH team on Friday. I don't know what to say to them. I'm not really sure what's been difficult or why.

This morning I saw GP about my bleeding - she's done tests so now I have to wait. On Monday, I am seeing my rheumatologist. So, lots going on but hopefully stuff that will help. Maybe.

Hope everyone else is ok. Spoons to you all.

Please be honest with your MH team, if they are aware of any issues, you can be treated. I have had depression 4 times and I am currently on the 5th time and waiting for my appointment next week as an alternative to taking meds again, although I am not against them, they do work (fluoxetine).

Can't believe Dr said that, it won't do yourself any good to hide it from the people who can help you.

I find that I am going along nicely (or I think I am, DH usually corrects me on this) then I go downhill. I think it is the reality of living with such shit health. I got M.E./CFS when I was 20. I feel I have been robbed of my adulthood and all the things that I should have been able to do. Things like this are enough to depress anyone.

Grockle so glad you have kicked the professionals into action!

GP may be trying to emphasise that this is not a psychosomatic condition. Not really great to say you are coping well, though, when it has been such an awful struggle.

You must just be honest with the MH team about suicidal thoughts. I always feel a bit silly saying anything about it, but now I take it as a symptom that my usual coping mechanisms are failing me.

Oh, and Arbitrary how are you? Any news on jobs yet?

I managed a 14 hr day in London yesterday for a meeting, but the key was not exerting myself physically at all. I took a bus instead of walking 15 min to the office, for instance... feel mostly OK today! Have just sat at my desk and rested. Adrenaline sees me through the event but then I wonder how I'll be tomorrow.

On GET I mentioned in an earlier thread about a friend who has a pedometer to monitor his activity, and it has helped avoid spikes and crashes. He's much better than he was. Not sure if that is proper GET or not, though. He was told five years ago that he was too ill for GET.

Morning! How is everybody today?

Morning gallifrey. How're you? And everyone else? It's quiet on here.

My legs Are bad today - I did the school run on crutches & was so slow. I now have to take the dog to her socialisation group on the beach which will be difficult - the uneven sand & pebbles make walking difficult at the best of times. Then I have my emergency apt with MH team. I'm scared.

Then school run then a friend is visiting (she's 22 with boundless energy!), shopping arriving, DS cooking dinner (freezer food - pie & chips ) then BEDTIME! Busy weekend ahead but nice - just me, DS & my lovely sister.