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30/09/2012 at 14:34

I was told by my then GP a few years back that Glucosamine only works for about 50% of people. So may be worth just trying to see if you're one of those 50% or not before you buy a supply. IME about 2 weeks use should be long enough to tell.

Not sure if a GP would now prescribe a supply- it's not a medicine as such, just a supplement, but I do know that some GPs around here did prescribe it a few yrs ago. After all if it works for you, the saving on stronger anti-inflammatories/painkillers to the NHS would be there. Can remember thinking that by the time I got free prescriptions it wouldnt be available.... J.

30/09/2012 at 15:20

jo4eyes than you for your sugestions. i may try and talk to the doc when i next pop in but she always says at your age what do you expect. idid not know that it worked afte 2 weeks i can afford to try it for that time.

30/09/2012 at 15:41

If you have a Boots advantage card, with sufficient points on it, you could always use them to 'buy' a small supply, say 30 days of a low dose just Glucosamine to see. Then virtually no cost to you at all! No guarentee re GP prescribing nowadays, but no harm in asking especially if you can prove that it works for you. Supermarkets also sell fairly cheaply, so Tesco point vouchers also an option.

If it works for you, & no help from GP available, then 'on-line' suppliers are much cheaper, but I must admit to buying it as cheap as poss from Holland & Barrett. You often dont need the stronger dose that on-line suppliers offer, I find the majority of time that 500mg daily is sufficient. I do double up if have been strenuous outside, or when planning a lot of walking.

BTW always tell a hospital or any medics if you do take it, especially if you are due any surgery as it can cause some problems with coagulation of the blood. That's how I know about the 2 week period to get it to work!

Getting back on topic- yes I probably do post too much! Have learnt loads over the yrs on similar sites & hopefully helped people too. J.

30/09/2012 at 19:04

Maud.. it is working you have to mix 1 teaspoon of clear honey dissovoled in hot water then add 1 desert spoon of cider vinegar and stir.. it tasts like hot lemsip with the the lemon.. keep off citrus fruits/foods and foods with critic acid in. and dairy products they aggrevate it.. eat chicken, turkey all fish and shell fish and lamb or veal only.. no other red meats or old meat..stay away from tomotoes at all times. and sugar it all acid that builds up and makes it worse.. use wholemeal flour and bread and i use "pure" butters they are good and skimmed milk or oat milk.. lovely with porridge.. which is also very good.

i take cod livery oil and omega 3. and vitamin c as not citrus allowed..

the book i got told about by my specialist is called "treating arthritis the drug free way" by Margaret Hills.. new edition out august htis year. she suffered and was near crippled by 36 years old and told never dance or cycle again.. she did this progarmme inthe books for 12 motnhs and has not looked back since..it has some meal menus in there.. must take calcium supplement to replace lack of dairy. arthritis is caused by diet.. to much acid in the body.. so have to remove it..

do epsom slat baths or soaks.. these are very good.. do my hands in in for 15 mins in as hot as you can stand water and one cupful of the salts.. stretch and nbend the fingers etc for 15 mins.. then wrap in warm towel for 5 mins. do same for feet.. the bath is for whole body one bath hot water and 4 cupfuls of epsom salts.. for 20 mins.. get into a warm bed do not get cold.. do this 3 tims  a week.. it is so good..

at first i thought so much hard work.. but it is sooo worht it to be in less pain..

30/09/2012 at 19:09

sorry should be epsom salts bath.. sorry tired writing this today.. and it tastes of lemsip wihtout the lemon.. and the taste is worth the reward.. do it 3 times a day.. and get the book.

been trying to get car back on road.. turned over and a blue white smoke came out of the back and filled the compartment too.. the previous owner had added double the amount of oil in it so have to burn it off now.. and it stinks

30/09/2012 at 19:10

sorry to everyone for takin it off topic also.. but thought it be good to share some tips.. eat lots of fresh fruit.. peaches, apples, bananas.. nothing else. and loads of veg..

01/10/2012 at 19:28

I take glucosamine and omega 3 everyday. Careful with my diet asone f the symptoms of fibro is having irritable bowel. On new medication for the tum which is helping. But i keep on plodding and causing trouble all the time. Always on the table that makes too much noise you getthe picture i hope. I swim twice a week at a local hydro pool which keeps me moving. You dont have to look far to find someone worse off than yourself. Apart from being very tired today ive had a good day.

01/10/2012 at 23:44

Maud - I suffer from IBS, a side effect of having ME/CFS, I take acidophilus for this, it's just lactic acid bacteria, it's best taken with a glass of milk, or yoghurt, but if you're not having dairy than it will work, just not as well.  It has worked for me, I only tend to take it now when I've had an attack of IBS (not as often as before I had kids).  I don't think it's THAT expensive, and if it stops the awful pain you get with IBS it's worth it.

01/10/2012 at 23:50

Gardeningfanatic - burning off the excess oil is NOT a good idea, it will get rid of the oil, as it leaves a sticky residue that can really mess up your engine.  Hubby is an engineer, and recommends dropping the oil (especially if the car has been stood for a while), and replacing.  You could do this fairly easily by removing the sump plug, make sure you've got an old roasting tin or something similar to catch it in.  The Haynes book of confusion is good for this (instructions on how to do it, not to catch oil).

Blue/White smoke coming out of the exhaust can also be a sign that the engine has gone to the scrapyard in the sky.  Hope it's not that.

02/10/2012 at 09:28

Mummy muddy paws, i started off with Me/cfs and then with all the probs with my back now have fibromyalgia, I now take buscapan as i was having a really bad time with the tum. How long have you had me?

02/10/2012 at 10:28

Maud, I started having problems in 2003, but wasn't diagnosed with ME/CFS until 2005.  Thought I was going loopy until I started talking to a chap who's had it for ages, and I was thinking, yes, that happens to me, so does that, so does that.  Went back to my GP and he send me for loads more tests to rule everything else out, even went to a tropical medicine specialist, which made me laugh as I've never been out of the UK (I don't like heat, so I don't see the point in foreign holidays).

So I've had it for going on 9 years now.  It IS getting better, I've become great at pacing and recognising the danger signs of doing too much.  I think I'm starting to recover at long last, as I'm having far more good days than bad ones.  The 'brain fog' I get when I've done too much I find hardest to deal with, I get very frustrated when I can't express myself. 

I found the support group I was referred to by my GP was a great help, but I did go through a sort of mourning period for my old life - I was very energetic and sporty, riding bikes and learning to ride horses, aerobics and swimming a mile twice a week.  ALL that went, one by one I had to give up the things I enjoyed.  I was very bad when I had my first baby, sleeping at least 16 hours a day and in a wheelchair for the rest, I just didn't have the energy to walk anywhere!

I 'm much better than I was, just time, patience and learning to live with it I guess.  Unless you have ME/CFS, you don't know what tired is.  I got VERY fed up with people saying 'Oh, I think I must have that.....' when you have ME, you KNOW you've got it.  It's not just doing too much and then feeling tired, it's waking up as tired as you went to bed!

02/10/2012 at 11:42

Hi, my daughter had ME throughout her teens and twenties, following on from Glandular Fever when she was only 11 years old (think she got it from having her ears pierced - way back then in the1980s, they were not so hot on hygiene).  It totally screwed her education up and she ended up with just a few good GCSEs and a few modules of a degree course, before she relapsed and had to leave.  It's been so hard for her, a potential high flyer, so bright and bubbly and then crashing as soon as she tried to push herself.  However, with the support of a lovely chap who she married earlier this year she  started a degree course in her early 30s and graduated this year with a good degree and she really seems to have come through the ME and out the other side, not having had a relapse for 4 or 5 years now - it's going to be hard finding a job in the current work climate,  as although she's in her 30s she has an erratic job history due to her poor health  - but she has some interviews coming up so crossed fingers would be much appreciated.

Good luck Mummy Muddy Paws 

02/10/2012 at 11:54
Dovefromabove, to overcome so much and to achieve what she has is testimony to her courage and her determination. I'm sure these interviews to come will have a successful outcome. ,yep, my fingers are crossed too
02/10/2012 at 11:58

Thank you Christopher - yes, I'm very proud of her 

02/10/2012 at 12:01

The trouble with ME is the type of people who seem to get it are the ones who do push themselves.  It's the worst thing that you can do, there is no pushing through ME and coming out the other side!  It seems to be a waiting game, and I'm really glad your daughter has come through the other side.  I'm sure she'll find something.  Has she thought about going into education, as although it's hard work, you do get lots of time to recover - the longest half-term this year is 8 weeks.  I'm looking for work in a school office, I used to be a programmer, and worked away from home lots, of course you can't really do that with ME.

If/When your daughter and her chap decide to have kids, tell her to check out the ME/CFS Parents web site, lots of inspiring stories on there of ladies (and a few chaps) that have managed to combine parenthood with ME.  Not easy but do-able (and she'll be able to cope with the broken nights better than a lot of other parents as she knows the bone-crushing tiredness you suffer from).  I know from experience!

Sorry everyone, we seem to have crashed this thread and turned it into an ME/CFS self-help thread!

02/10/2012 at 12:12

Thanks for your encouragement MMP   She's actually hoping to get a post as a teaching assistant, to ensure that she really wants to go into teaching before doing the teacher training following her degree.  

She has two lovely teenage stepchildren with her hub and has been a big part of their upbringing as they've been together now for 12 years.  She's now in her late 30s and they're not sure about starting a family now - her hub has an inheritable condition (Sickle Cell) and their ages also mean there are other considerations as well as her own health.  She's decided to try to get established in a career and then decide, but thanks for the info - it may be useful in the future 

02/10/2012 at 12:34

The teaching assistant idea is very good - my husband did the teacher training course (one year), it's VERY intense and hands on, you get chucked in at the deep end very quickly, and there's lots of lesson planning that you have to do now to keep Ofstead happy.  At least she's had some experience of being a parent without having to go through the rigours of pregnancy and birth!  I think having ME makes you really think about being a parent, you have to really WANT to have kids to risk relapsing, and children are hard work anyway without illness on top of all of that.  It's really encouraging that she's now got the degree, and can have some sort of working life.  I would recommend that she doesn't go for secondary teaching, they're a lot bigger and stroppier by then, and Andy felt threatened a couple of times (and he's 6'3" and built like a brick outhouse, but a big softie).  Getting in a good school helps, there's lots of support in a decent school, she'll very quickly get a feel for how the school works.  Andy's brief stint as a secondary teacher has put me off, but he was in a really awful school with no decent mentoring or leadership.  He's much happier as an engineering lecturer now, at least if his apprentices muck about, he has the sanction of talking to their employer, but there's still lots of pressure to get students through with good marks.  And there's an Ofstead looming!

02/10/2012 at 13:08

Good luck to anyone living with ME. Not had personally but do understand about the fatigue situation- just as if the plug pulled out & have to stop asap! Have had serious health problems since '01 so am, reluctantly sometimes I admit, used to it. OH finally understands.

Yes you do go through a grieving process too when your body isnt as it was, but as time passes you do adapt & develope coping mechanisms.

A medic earlier this year suggested that I stopped gardening whilst undergoing chemotherapy. I retorted that I'd end up in the 'funny farm'!  Just had to be very hygiene concious as wouldnt be able to 'fight' any infections.

Now if it would only stop raining....... J.

02/10/2012 at 13:59

Jo, I agree, sometimes you know there will be a price to pay for doing something, but you want to do it so much, you just think 'Knickers to the consequences!' and do it anyway.  I am finding de-weeding the garden very theraputic, don't know how well I will cope with the digging, but time will tell.  I would much sooner live with something like ME, a very close friend has had major problems (started with oesophagal cancer and still ongoing now), and she has had several bouts of chemotherapy and radiotherapy, don't think I'd cope very well with the constant sickness & hair loss.  I suppose you have to though, as the alternative is just too awful to contemplate.....

02/10/2012 at 14:44

@mummy muddy paws.. it is ok.. nephew is a fiat engineer said it is all sat in the cat and the exhaust..as the pistons hadto push it out to get compression. so will burn off as use it.. the engine turns over fine timing was out by one tick and the inlet valves were stuck open.. but will say to him about the oil.. drained most of it out until the level was as it should have been.. it was clean good oil not brown or dirty and it had old fuel in tank ( over 4 months old)  anyway so was stale and wouldnt spark the plugs properly.. it is running fine now and just wiating for a new battery then off to MOT. fingers crossed.

but thank you for your advice..

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