Fibromyalgia

bigzippy

I had to take OH to work today so went back to bed after I got back and got up in time for my GPs appt this arvo, then only just time to get my prescription before going back to pick him up again. Then it was getting tea on time and I got sucked into watching The Saint on the tele...which is just ending...while I was catching up on you guys, and felt the need to chip in that my parents always boiled coke and then chilled it again for me to drink my I had gastro problems. They'd gotten the advice from a healthcare professional friend of theirs.

And I noticed yesterday about your big wins Raeh! I'm very impressed! (Not to mention a tad jealous perhaps :rolleyes:) What is this Big Snap and what can I do to rake that much in?!

LameWolf

Hi everyone.

Suep I hope you're feeling a bit better today. My own favourite "remedy" for nauseous stomach (which I get frequently) is a dry cream cracker.

Oh, and on the subject of sewing machines, I got a full-size but inexpensive one recently, with thoughts of making cushion covers, but have yet to try it out properly. I did try it to make sure it worked (sewed two bits of cleaning rag together, just as a test) and I have actually got some material now - I just have to get material and machine together on the same table. :rotfl:

CwtA nice to see that you ate a proper meal.

Mr LW is going to a friend's house to play Dungeons & Dragons this evening; trouble is, he wants me to go as well. I'm trying to work out how to tell him I don't really want to go, without him taking it as a personal slight. I just do not have the energy, but he seems to think that I'll perk up once I'm there, and that it'll "do me good to go out", especially as Molly Dog will be there. *SIGH* He's a lovely man, but as you guys all know, someone who's obscenely healthy can't really understand this carp.

pamaris

Careful_with_that_Axe wrote: »

I suspect we don't have compounding pharmacies here as I have no idea what they are!

Hi CwtA!
A compounding pharmacy is one that mixes customized dosages and preparations. For example- if Lyrica only comes in 75mg caps, they take them apart and create 10mg caps (or whatever is required). Seems simple enough; maybe it is just called something else here.

Careful_with_that_Axe wrote: »

When I was first being poked and prodded by various medical bods I asked about supplements as I used to take Evening Primrose Oil, Vits C, D E and A and Zinc - I had taken these for some 10 years. I was advised to stop all supplements as it brought more chemicals (albeit natural ones) into the equation. The only thing I've asked about since was Glucosamine and Rheumy said it would not be any help unfortunately.

I doubt the supplements you were taking were harmful, especially after 10 years. I can see how taking various supplements might make it more difficult for a doctor to assess our response to medication (that is, if said supplements are actively interfering), but really the things you mentioned are just nutritional supplements- according to the advice you were given, food would bring "extra chemicals" into the equation.:rolleyes:

Everyone's experience and attitude towards supplements and alternative therapies is very subjective- though there are medical journals to sort through that have some good information. It is a mine field but I believe there is some value to some of it for some people. Kinda like prescriptions I guess. It is just really hard to find good information.

I will comment that I have found the medical community here to be so cautious that patients often miss out on things that might benefit them. I think that maybe the NHS trains its employees to always veer on the side of caution, period. For example, the list of things you are "not allowed" to do while pregnant is twice as long in the UK as in many other places. Unfortunately, many medical providers simply spout the NHS party line on things. Just my observation, not necessarily any science or truth to that.;)

A holistic GP would be ideal- I could of course visit some sort of natural medicine practitioner but chances are they would be hostile towards conventional medicine. I would love to find a doctor that did actually treat me holistically, but I think it may be a pipe dream at the moment.

OK- back to my research.

LameWolf

pamaris wrote: »

I will comment that I have found the medical community here to be so cautious that patients often miss out on things that might benefit them. I think that maybe the NHS trains its employees to always veer on the side of caution, period.

It's not only that - if the National Institute for Clinical Excellence (NICE) decide that a drug is too expensive, or "not cost effective", it won't be made available on the NHS, even though it could provide a much better quality of life.

I'll shut up now, as I'm in danger of soapboxing on this subject.:o

bigzippy

pamaris wrote: »

Hi CwtA!
A compounding pharmacy is one that mixes customized dosages and preparations. For example- if Lyrica only comes in 75mg caps, they take them apart and create 10mg caps (or whatever is required). Seems simple enough; maybe it is just called something else here.

Hi Pamaris, no worries about your absence, I think a lot of us dropped out for various periods over Christmas etc. Good to have you back

I, like Cwta, haven't heard of a compounding pharmacy - but from your description it sounds far too sensible a thing to have over here!! :rotfl: I wanted to to reduce the Amyonatrampoline I'm on a bit further: I take2x10mgs a night, but the GP told me yesterday that the lowest the manufacturers make is 10mgs so I'd have to half my current dose, which makes me anxious as I've already noticed a decrease in effectiveness just by using a different brand! He said I'd have to split the pills, which, as he explained, isn't an exact science so the dosage wouldn't be as strictly controlled. He's left it in my hands to try out if I want to and report back to him.

As for supplements, I stopped taking anything while I was having all the tests to find out what was wrong with me as I didn't want to cloud the results or mislead them etc. I don't have a problem with taking supplements now...other than it's a matter of popping even more pills!! What I will say though, to those struggling with thrush with antibiotics (grim, and really enough to put me off antibiotics forever!) - providing it's not teaching granny to suck eggs! - is to take Acidophilous. It's a concentrated capsule version of the good bacteria found in yoghurt, so it's safe to take for the lactose intolerant of us. :rolleyes:

I said before that my ex (who runs an independant health food store) was telling me what he would recommend I took on a regular basis - I can dig it out again if you like Pamaris? For me the expense was more than I could afford, esp at the time.

Well, I've gotta go pick up OH from work :rolleyes: *sigh* Catch you all later

pamaris

bigzippy wrote: »

Hi Pamaris

Hi!

bigzippy wrote: »

I said before that my ex (who runs an independant health food store) was telling me what he would recommend I took on a regular basis - I can dig it out again if you like Pamaris? For me the expense was more than I could afford, esp at the time.

Sure if you have a minute. I'd love to know what was recommended. Thanks!

Careful_with_that_Axe

Understand what you are saying about supplements as just being nutritional, pamaris, but I'm happier to let things lie at the moment.
I did speak to GP about alternative therapies, and she said that that NHS will not pay for any that have not been proved by such as the British Medical Journal or NICE as being efficacious. However, she did say that many GPs who have taken an interest in this will point you in the right direction.
I, too, have found that alternative practitioners are very anti-conventional medicine which really puts me off them.

I was just about to be issued with a prescription for HRT today for these hot flushes when it was realised there was a contra-indication in that it makes the steroids increase the plasma levels in the blood which is dodgy.
I'm going to have to try to get through to Rheumy on the phone to see if he will OK it before they'll prescribe.
However, I was told to take Red Clover - this has been OK'd by BMJ and NICE - so off I trotted to health shop and got a months supply - for £15!!!!! Hope to gawd it helps if that's the cost of it.
Missed out on lunch today, so about to have an early dinner.

Yes, I know, I know!

p.s. How did OH get on in new job??

somebody_else

bigzippy wrote: »

I, like Cwta, haven't heard of a compounding pharmacy - but from your description it sounds far too sensible a thing to have over here!! :rotfl: I wanted to to reduce the Amyonatrampoline I'm on a bit further: I take2x10mgs a night, but the GP told me yesterday that the lowest the manufacturers make is 10mgs so I'd have to half my current dose, which makes me anxious as I've already noticed a decrease in effectiveness just by using a different brand! He said I'd have to split the pills, which, as he explained, isn't an exact science so the dosage wouldn't be as strictly controlled. He's left it in my hands to try out if I want to and report back to him.

Afternoon folks. Sorry, Mum came down today and I've not long got back on my pooter.

Erm... zippy - you might want to politely suggest to your GP that he/she has a look in the BNF regarding the amitriptyline.

When I was first put on it I had to increase my dose very slowly - on top of the 10 mg tablet, I also had 2.5 mgs in liquid form. (If the tablets don't make your tongue go numb, the liquid will.)

I thing we do have what pamaris calls a compounding pharmacist - they're basically what we call pharmacists. There have been occasions when I've been prescribed stuff which has not been available in the strength prescribed so the pharmy has mixed it up for me. I will add that this tends to be liquids rather than tablets though.

suep

somebody_else wrote: »

Sue, sweet, what have you eaten today?

Might I suggest that you just have clear liquids (boiled water or black coffee if you can stomach it) for the next few hours 'til you stop upchucking? If you've got a stomach bug or eaten something recently that's disagreed with you, the first thing you need to do is stop 'feeding' it and give it time to clear.

Thanks S/E I know what caused it, I started having cystistat instills, a treatment for interstitial cystitis last week, it involves a cathetar and I was warned I might get an infection, on monday night my bladder felt a bit sore and I thought it might be the start of one so I started taking some antibiotics ( I have some on repeat as I get a lot of infections) these a/b have made me sick before, only not so bad, I dont think being full of cattarh helped either. Im fine now and so's my bladder, Im not going to try them again.
sue

suep

raeh wrote: »

sue im so sorry you are feeling so bad do you think you could manage to have a biscuit and a cup of tea, often when im feeling sick tea and a rich tea biscuit are all i can face
i had one of those teeny sewing machines and it was useless so i got a full size one, aldi had them in a few weeks ago for £39.99 and they were really good as my friend bought one. They have them in every so often as well i dont do much at all with mine but i have shortened curtains and made school play outfits

right im off to watch eastenders, hope i havent missed anyone

Thanks Raeh, Im much better today, I managed a bit of dry toast before I went to bed so that I could still take my night meds.
Thanks for the advice, I wont waste my money on one of the tiny sewing machines. We havn't got an Aldi anywhere near us unfortunatly, but I will have a go with Mums first to see if I can use it, and if I can I could look in the for sale page of the local paper.

Just seen CWTA's post, Thanks for the tip, Im off to have a look at the Tesco website x
sue