Quack Quack Punch

Dear Claire,
Thank you for your e-mail. We at FMA UK always tell people that we don't recommend any treatments and point out that what might suit one person does not necessarily suit the next and anything that is expensive is to be thought about carefully. One of the problems we have is that occasionally people do find these things be they drugs, drinks, creams or therapies helpful. The best advice we can give is that there is no cure at present. I think from a legal point of view it would be very difficult to do anything about them en masse and we at present can only work on an individual basis as people ask us about these remedies.

This is in response to an email I sent about fibrofix and it extends to the recent spate of twitter requests I get from alt therapists and cure merchants. I am a little annoyed at the FMAUK for not having the balls to do what Ben Goldacre does http://www.badscience.net/ or to bring the latest research and advice to the people like http://www.fibroaction.org/ does.






The NHS look after me well, I have gotten back a lot of my life on the physical and mental support I am offered (from medication to CBT and hydrotherapy) I feel that these quacks are preying on vulnerable people (especially those in the USA) or people who's needs in the UK aren't met. FMS cannot be cured but it also cannot be helped by quick fixes.


I am still fighting it daily and have for 3 years now, with meds, diet and exercise, it's hard and sometimes I lose the battles and it seems there is no hope.
But there is, it has to come from you though, if you aren't happy with your dr's advice, let them know, if your FMS symptoms are too much, let them know. Keep at the stretches you got given by the physio last year, keep at the CBT techniques when you feel hopeless, keep asking questions and don't be afraid to ask them. That is what fighting is.

Studying, extensions and headaches

I have been studying for a while now and really loving it. It has been hard but I am almost done with my science course and have a maths short course that finishes soon too. The hardest thing about it is that I am so delicate, anything can flare my FMS.
I started on Gabapentin the end of July because it was cheaper the doctor said. I should have twigged, I am a lady with expensive tastes, no cheap jewels, no cheap foods and no cheap clothes ('cos they fit badly) and certainly no cheap meds.

Studying is still a lot harder than it has been for a while, not becuase the work is harder but because I am weaker.

It's not a word I like to use but it seems that being ill has really knocked me for six.

So I am putting the study on hold after January, I don't want to but I have to. Maybe I will pick up another small course (Maths maybe, or a residential, even some sciencey voluntary work) but I want to be swimming 3 times a week and toning my body (because I have joint hypermobility too) plus getting back to some improv http://www.comedysportz.co.uk/regularWorkshops.html (sure Bron would appreciate the plug!) Because I have limited energy I can't have an active social life AND study.

Part time life is something I am slowly coming round to, semi-retired at 22 isn't such a bad thing considering what I have acheived in the last 3 years, moving to a new city, new job (lost job!) and university level study maths and science and a long-term relationship AND a guinea pig.

Thinks (that typo is for Laura B) are looking up, then down, then back up again with a general upwards trend!
So for now, study hard until October when I have my science ECA due in, study-light until January (for my Maths course) Then my time is my own to get all fit and til September when I return to studying with renewed vigour.

(All typos brought to you by my new laptop keyboard!)

Small World

Well, facebook is making the world shrink......... I would love to hear your stories of small world meetings. My own, for some strange reason link to one friend in particular! Out for my 21st, I met Jeff in the Krazyhouse in 2005, turns out he was Walton born and bread so we knew the same people, but did not know each other! Now a friend of his also knows my cousin..... massive coincidences and a very small world.... do you have better stories?

Bisexual Atheist, I am so going to hell!

Wow, so I am going to hell!

If there are two things that get bad press it's atheism and bisexuality.

I am going to compile a nice little list of media misrepresentations of atheism and bisexuality.

Just to my lil readers know, I am not a baby eating succubus!


Ok so here we go, basic instinct...murderous, promiscuous bisexual.
Kate Veatch in dodgeball - slag, sorry having her cake and eating it bisexual (though I love the film!)

ok that's just so far.....will edit laters! Please give my any more people you think should be included

I found this link and was over joyed,so scroll down to the categories and find one you like http://tvtropes.org/pmwiki/pmwiki.php/Main.DepravedBisexual This website is addictive. and http://tvtropes.org/pmwiki/pmwiki.php/Main.HollywoodAtheist

My sis says she does not understand bisexuals at all.... all I can say is.... it's all about the love. She has her type of woman, I have my type, other people have their type, they may not all be the same type, Blondes, fem, butch, post-op, gingers, Japanese, geek, pop-tart, metal-head, air-head whatever! Love is love and as long as people are loving and not hating, it's all that should matter.

As for Atheism, I have asked Oli, that if I ever start believing he should have me committed, no conversion or seeing the light for me thanks.

This is hysterical

*wees*

What's the point in raising awareness!?

I have tried really hard this year to raise awareness, I have 126 "friends" on facebook, a handful on twitter. I asked who cared about FMS, emotionally blackmailing people into noticing upset me. Only 14 people anwsered to the question and the quiz, none of them family. So where am I going wrong? Is it because I am an average jo? Is it because I go on about it all the time? Is it because no one cares about sick people, or understands? Is it because it's not relavent to them?
People prefer commenting on things they can identify with, and being ill or having FMS may not be one of those things. A "friend" asked me what FMS was......... how can a person who knows me, not know about fms? It upset me because I spend time asking "How are you?" How are your family?" To realise what's the point in having selfish people around who want you to reply to their commentry but will not care about replying to yours.


*sad Claire who needs a cookie*

FMS Quiz 11-05-09

Fibromyalgia quiz

1. What does the word fibromyalgia mean (fibro-my-algia)?

2. How many fibromyalgia tender points are there?

3. Name 5 (or as many as you can) symptoms of fibromyalgia (there are more than 5)

4. Name 3 (or as many as you can) pre-existing conditions that can lead to fibromyalgia

5. How many people may be affected with fibromyalgia in the UK?

6. What sex is more likely to have fibromyalgia (extra point for getting the ratios)

7. Name 5 (or as many as you can) physiological/anatomical differences between healthy people and people with fibromyalgia

8. When is the UK fibromyalgia awareness week?

9. Name 3 medications and 3 treatments that are used to help people with fibromyalgia.

10. What can you do to support people with fibromyalgia? (The best ideas get a prize)



Did you get to the end? Unsure of anything? Then you can CHEAT! I don't mind, go look it up seriously ;)

Bitten by the blog bug....here's another.

I love my Dr's! A lot of people rant about how their doctors are pants.....I have been looking after myself pretty well with advice from the intertubes and also pop along to the Dr's. Their advice is SPOT ON everytime, they give me good advice and they refer me where needed (I have been refered for 2 lots of CBT, and now going to see ALFA http://www.manchester.nhs.uk/health/healthy_lifestyles/alfa.html) All of the Dr's there have been super stars....If you live near me ask if they are still taking on (which is think they are)

This is there address and phone is here http://www.manchester.nhs.uk/local/map.aspx?area=19&services=2&service=88

Parcel Force Forced Parcel Pain! Contains A Swear!

Damn it, I sent a letter of complaint about this rude guy who saw I could barely stand up (bad knees day) then proceeded to hand me a parcel in my left hand (weak) which I dropped and swore (motherfucker!) Here's the letter anyway.


Hello, I have just had a package delivered (10.30am) and the delivery man was extremely thoughtless. He buzzed the flat repeatedly when I could not get there quick enough to answer him, I signed for it having to lean against the wall to do so as I use a walking stick in my right hand and also write with that hand. Then, after he watched me struggle because I could not support myself without my stick, he handed me the package (of 4+ books) in my left hand and promptly turned and left. I had to drop the package as it was too heavy for me to hold in the one hand, I swore, quite loudly as it really hurt me. He could have placed it on the floor for me seeing that I was struggling. This man was very impolite and thoughtless and caused me pain. All I'd like this time is an apology from yourselves and the delivery man and something to cheer my flat up now that I can't leave it today while my left wrist and arm recover and shoulder recover. (I’d gladly talk specifics about my disability if you need to.)

Typing one handed,
Claire Smith

This guy has really pissed me off with his ignorance and uncaring attitude. Disabled-Hater or ignorant git? Either way, that's no excuse for not being a decent human being.

These things I assume:

These conditions are not my fault.

These conditions don't get in MY way. (Proved by acheivements, my motivation and the love I give to other people.)

I may have days where I am limited to do one thing but the sky's the limit for everything else.




UPDATE: I have had a reply and an apology from the customer service people, they are going to contact the local depot (which is up the road from me) and see what they say.

I drewed this!

I did this after being inspired by playing some Star Wars RP last night! I may do another one with Stormtroopers, don't steal my idea!

Email to friend on wearefibro.org

Sorry for the long email, I am also going to blog this, I need to get it off my chest (and wont be using guiaifenesin for it!)

I was reading fibrofix.com and some of the comments Anne has left on this website that are very misleading and have no basis of scientific fact, there are no obvious journal links or studies etc, and there are adverts on there too (whether she receives payment for those adverts I don't know, or care.)


It saddens me, the state of this world when people suffer and there is always someone trying to make money from it. People with FMS are often let down by the health services and people become so desperate they will try anything, and it's this preying on vunerable people (like theGuaifenesin that has been proven to be no better than a placebo when it comes to treating FMS) that really makes me angry, I want to stand up for people but feel a bit useless and lost with it all.


If you can get hold of a copy of Ben Goldacre's Bad Science, or visit his website www.badscience.com (I think) The book helpfully explains how fair tests are done. It opened my eyes. Being a newbie scientist I feel it's my job to make sure that truthful answers are given and how science (and pseudoscience) relates to people with FMS. I'm honing my skills to kick the asses of people who make false claims and raise the consciousnesseseses(!) of people who believe these claims because they don't have all the information.

http://www.fmnetnews.com/resources-alert-product6.php