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  • FIRST POST
    Lindsey1948
    Fibromyalgia
    • #1
    • 22nd Oct 08, 3:21 AM
    Fibromyalgia 22nd Oct 08 at 3:21 AM
    Thought I would just introduce myself, I suffer from Fibromyalgia, and have just joined this forum. In 2007 I had cancer of the uterus and have successfully had it removed. I also have a walking disability caused by a fall in 1995. I also became diabetic last year. There has been a suggestion recently that FM/Thyroid problems (I have underactive thyroid)/Diabetes are all linked.

    But life is good , and although Im disabled, I worked full time until 2002, then took 18 months off whilst I learnt to live with the FM, and then did a year part time as administrator at a local youth centre, I liked it so much I have been a volunteer there 1 day a week ever since, keeps me young thinking!! I officially retired in April this year, and although I receive pension and pension credit + DLA and a small amount of company pension, there are days when finances are tight. I lose most of my DLA to the motability people so that I can feel safe in an up to date car that I know wont cost me money to insure/tax or repair/service. (I keep the low rate care).
    Just wanted to know if there was anyone else on here with FM, and any ideas for coping stategy's regarding energy levels/pain management etc.
Page 2
    • 281273
    • By 281273 22nd Oct 08, 8:52 PM
    • 145 Posts
    • 256 Thanks
    281273
    I was diagnosed 2 years ago with fibromyalgia but have had the symptons for 18years (Since i was sixteen). I havent got a problem with my thyroid however ive got Crohns instead and know have had a colectomy and an ileostomy (a bag). I also suffer a lot with depression and see a neuropsychologist. I dont get DLA, i tried to claim but was unsucessful. I just get short term incapacity benefit. My problem is that i dont see myself as being ill even when i was on 50 tablets a day, i still felt the same. I had the op and i didnt think of myself as having a major op. It like i blank it out. I just wish i could blank the pain out. Some days its hard to even move the tops of my fingers and most days i would love to stay in bed, but because of the kids i cant and dont. They are 12,5,and 3 and need me. The oldest and the youngest have aspergers with the youngest one being nearly mute. But I know being like this is not good for me because im emotional all the time (including now).

    I used to work, i worked in a solicitors as a assistant legal cashier, however i started some new medication and it threw my system into meltdown and they decided i either had to work full time (couldnt even manage the part time hours) or they would get rid of me. So they did, all legally thou.

    So my way of coping is I just carry on
    Sealed Pot Challenge - No 1520
    Want to be debt clear by June 2012
  • monkey03
    i was diagnosed the cfs after 2 1/2 years of numerous tests and being told i was "imagining" my symptoms. I have been suffering for more than 4 years and have recently tried for DLA but been rejected twice because my condition is variable. I work full time (but have used my 12 weeks sick pay allowance for the year in the last few months!) I'm at my wits end trying to get some help..some days i feel like i could just curl up and die i'm in so much pain and so exhausted! How do you get anyone to listen to you when all you do is fill out 45 page application forms, only to be turned down a month later, without anyone ever meeting you and seeing how you struggle getting in/out of the car, having to hold onto others to be able walk anywhere, being too scared to go anywhere alone for fear of collapsing or not being able to park close enough not to be exhausted before you reach the checkout.....
  • yellowrock
    Hi All

    I too hav fms, been struggling of late with my osteo arthritis too. am waiting to see endocrinologist at local hosp due to lots of hypoglycaemic attacks, my blood sugar is all over the place! Recently have been trying to keep to a low GI diet and have noticed a slight improvement in my fms symptoms, when I did sneak some chocolate I got a real nasty flare! Not got diabetes though, but have heard low blood sugar is a common symptom of fms. I work part-time but sometimes it feels like it is 70 hours a week!! Well I suppose it is if you take into account running a house and looking after my son. My hubbie is great but I do feel guilty sometimes that he has to do so much to help me, I just want my independence and social life back! Would be lovely to hear form other fms suffer's and have a chin wag? Anyone tried the epileptic drug - gabapentin I have heard it is really good for fms.

    try to keep positive,
    • bdmum1
    • By bdmum1 22nd Oct 08, 9:58 PM
    • 90 Posts
    • 89 Thanks
    bdmum1
    Hi all.

    Another member of the Fibromyalgia clan here!

    I was diagnosed as having ME/CFS with Fibromyalgia and IBS around 6 years ago after many many years of investigations. I suffered cancer in my 20s (I'm now 49) and many of my symptoms over the following years were put down to the menopause, stress, depression etc. The ME/CFS Specialist suggested my illness may well have been triggered by the cancer 20 years earlier as I had suffered repeated bouts of unexplained ill heal health / fatigue / burnout ever since.

    I attended a Graded Exercise Programme for 18 months, and whilst it was useful to have a clinical explanation of the illness and its' effects, and it was really helpful to meet other sufferers, my health improvements were minimal.

    I now receive Long Term IB, DLA including Higher Rate Mobility (used for a Motability car) and Middle Rate Care. My former employers have also accepted my illness as permanent and have awarded my pension rights early.

    Great to "meet" so many fellow sufferers, and hope we can help and support each other in any way we can.
  • Penny-Pincher!!
    hi there i have had fibro for 4 years following a car accident. which came first the fibro or under active thyroid?
    will add more at a later date, should you want to contact me jansmail@hotmail.co.uk
    Originally posted by jansart
    Hi Jan

    I think it would be a good idea for you to remove your personal email address for security purposes.

    I was DX'd with FMS 4 years ago. I have it alongside SLE and alot of other health problems. I am in a wheelchair. I also have an underactive thyroid. I see a Rhumy and Encronologist professor at Kings College with regards to the FMS & SLE.

    PP
    xx
    To repeat what others have said, requires education, to challenge it,
    requires brains!

    FEB GC/DIESEL 200/4 WEEKS
    • vivatifosi
    • By vivatifosi 22nd Oct 08, 10:33 PM
    • 18,404 Posts
    • 114,218 Thanks
    vivatifosi
    Hi all,

    I'm posting for my aunt who is also a fibro sufferer. She contracted it after an accident, so I was just curious to see who else is in the same boat. Interestingly, she also has Sjorgrens Syndrome, which I've also seen noted, so wondered again if there's a link.

    BTW, thought you might like to see one of the presents that I got her for her last birthday, though please don't click link if you are easily offended... She liked it anyway...

    http://www.cafepress.com/cp/moredetails.aspx?showBleed=false&ProductNo=4369816 &colorNo=0&pr=F

    Edited to add: sorry forgot to mention because its late. My aunt doesn't have net access which is why I'm posting for her.
    Last edited by vivatifosi; 22-10-2008 at 11:06 PM.
    Please stay safe in the sun and learn the A-E of melanoma: A = asymmetry, B = irregular borders, C= different colours, D= diameter, larger than 6mm, E = evolving, is your mole changing? Most moles are not cancerous, any doubts, please check next time you visit your GP.
  • tightperson
    Hi, well I'm in the process of being diagnosed with FMS. My specialist is sure I have it, I'm sure I have it but I still have to see a Rheumatologist who specialises in FMS to finally confirm. I'm male which makes it unusual as FMS mostly effects women, I think my GP thinks I'm just making everything up or doesn't believe I have all the problems I do, I am going to change GP. I have had FMS for 8 months and it came on after sustaining whiplash injuries in a RTA and have been unable to work since then. I also have two prolapsed discs in my neck, severe osteoarthritis in both shoulders, back & hip problems, buckling left knee plus many of the problems you all know are associated with FMS. I have chronic pain 24/7 ranging from severe to very bad as well as chronic fatigue. I have been taking strong painkillers, Buprenorphine, for the last 8 months and Amyltriptoline for 3 months.

    I find the condition so debilitating, I used to be fit & full of energy, now even the simplest things are exausting, can't sleep, when I do I still feel crap the next morning and can't get out of bed, then have to sleep or doze through the day. Walking is extremely painful, I drag my leg due to the hip and knee problems and my overall condition seems to be getting worse, not better. I have pain throughout my whole body, the only place that is pain free is my head and face, apart from the headaches. I am on ST IB, have applied for IS and DLA recently but I'm still waiting to hear. This condition has ruined my life and I am becoming more & more housebound, my parents take me out from time to time, wife doesn't drive, otherwise I venture out when I have to. Today I went to the supermarket as we were out of food, even hanging onto a shallow trolley I felt exhausted and wanted to give up and go home. When I did get home I collapsed for 2 hoursunable to do anything. My wife has been unable to work for 10 years due to severe scoliosis but has never claimed DLA as I as working, she didn't want the "stigma" of being disabled, she has now applied for DLA and waiting to hear. I am thinking of joining the local support group for FMS, there are several all over the country, I am tryng to get to grips with living with this. I'm going as my hands/wrists are hurting too much and I keep having to go back and fill in missing letters, since I've had FMS I miss letters/words out when I type or write.
    Last edited by tightperson; 23-10-2008 at 3:46 PM.
    • welshbit
    • By welshbit 22nd Oct 08, 11:01 PM
    • 15 Posts
    • 19 Thanks
    welshbit
    hiya all
    I also have fibro, amongst a few other problems (arthritis, depression, long term back problems due to accident at work). I'm on long-term incap and DLA. I use my mobility allowance on a motability car.
    For those who haven't applied for DLA or have been turned down, try applying with the support of CAB. Most branches have advisors who specialise in sickness and DLA benefits. I applied on my own for DLA and got nothing. 2 years later went to CAB who filled in the form for me and got awarded higher rate for both care and mobility straight away.

    It helps to have a supportive GP, if you don't have one then try a different GP at your practice. I have 4 GPs at my practice, 3 of them have had me in tears, but the other 1 is absolutely fantastic. She encouraged me to apply for DLA and to use CAB. She advised me about a blue badge. You need a supportive letter from your GP stressing your problems with mobility. You then fill in a form and include the GP letter. Hopefully they'll reply asking you for a photo and a chq to cover admin (either 2 or 4, can't remember). [Does anyone else suffer with memory problems? don't know if it's the FM, depression or the meds.] NB you don't need incapcity benefit or DLA to qualify for a blue badge.

    If you are awarded high rate mobility DLA then you automatically qualify for a motability car (or wheelchair/scooter). I went to an assessment centre (motability will pay for this) and was recommended to have some adaptions made. Motability pay towards some but not all adaptions, You can find this information out on the motability website.

    I have been very lucky with my GP, she referred me to pain clinic (waiting lists vary locally) who sent me for hydrotherapy, physio (for learning how to relieve pressure points) and appointments with a hospital pharmacist. One of the drugs he prescribed was gabapentin... I have found this fantastic for nerve pain (shooting pain) although suffered side-effects on a high dose but I've now settled on a dose that's right for me, although I still get double vision but have corrective glasses.

    OK, I'm a bit worn out now, I hope that some of what I've mentioned will be helpful to at least one person. If I think of anything else that might help I will post some more.
    Hope you have the best day you can, but if you need to rest then DON'T feel guilty about it. (That's my biggest problem - guilt)
    take care,
    Ali
  • SteveCat
    Regarding the Fibro sufferers, I would like to ask a question regarding something I experience. Do any of you suffer pain in and around you rib cage, I do and its horrible. It usually starts from my back and shoots through to the front, I hate it and find it worrying sometimes thinking its something else. Anyway just thought I'd ask.
  • tightperson
    Regarding the Fibro sufferers, I would like to ask a question regarding something I experience. Do any of you suffer pain in and around you rib cage, I do and its horrible. It usually starts from my back and shoots through to the front, I hate it and find it worrying sometimes thinking its something else. Anyway just thought I'd ask.
    Originally posted by SteveCat
    Sorry that's one problem I don't have, no pain in my ribcage or face, just everywhere else.
    • welshbit
    • By welshbit 22nd Oct 08, 11:19 PM
    • 15 Posts
    • 19 Thanks
    welshbit
    Hi all,

    I'm posting for my aunt who is also a fibro sufferer. She contracted it after an accident, so I was just curious to see who else is in the same boat. Interestingly, she also has Sjorgrens Syndrome, which I've also seen noted, so wondered again if there's a link.

    BTW, thought you might like to see one of the presents that I got her for her last birthday, though please don't click link if you are easily offended... She liked it anyway...

    http://www.cafepress.com/cp/moredetails.aspx?showBleed=false&ProductNo=4369816 &colorNo=0&pr=F

    Edited to add: sorry forgot to mention because its late. My aunt doesn't have net access which is why I'm posting for her.
    Originally posted by vivatifosi
    Thankyou for posting that, I SOOOO want that mug
    • welshbit
    • By welshbit 22nd Oct 08, 11:25 PM
    • 15 Posts
    • 19 Thanks
    welshbit
    Regarding the Fibro sufferers, I would like to ask a question regarding something I experience. Do any of you suffer pain in and around you rib cage, I do and its horrible. It usually starts from my back and shoots through to the front, I hate it and find it worrying sometimes thinking its something else. Anyway just thought I'd ask.
    Originally posted by SteveCat
    Hi Steve, I get pain around my rib cage, I get pressure points there, can feel the tough muscle in spasm with my fingers/hand (physio showed me how). From what you describe though, if it's your Right side, and when in your back the pain seems under your shoulder blade, it could be gallstones. Obviously no-one can diagnose online, but have you been to your GP about this? (I have gallstones myself)
  • tightperson
    It helps to have a supportive GP, if you don't have one then try a different GP at your practice. I have 4 GPs at my practice, 3 of them have had me in tears, but the other 1 is absolutely fantastic. She encouraged me to apply for DLA and to use CAB. She advised me about a blue badge. You need a supportive letter from your GP stressing your problems with mobility. You then fill in a form and include the GP letter. Hopefully they'll reply asking you for a photo and a chq to cover admin (either 2 or 4, can't remember). [Does anyone else suffer with memory problems? don't know if it's the FM, depression or the meds.] NB you don't need incapcity benefit or DLA to qualify for a blue badge.
    Originally posted by welshbit
    After my RTA I had a very sympathetic good GP, then I got moved to another GP for the last 8 months and he's done nothing for me, thought I was having a laugh when I told him I was applying for DLA, wouldn't help my application at all. The DLA have now written to him for a report, he knows nothing of many of the problems and difficulties I face, I'm worried he will scupper my DLA claim. I have now got several Specialist Consultant letters together and sent them to the DLA and I am now going to move to another GP.
    • welshbit
    • By welshbit 22nd Oct 08, 11:50 PM
    • 15 Posts
    • 19 Thanks
    welshbit
    After my RTA I had a very sympathetic good GP, then I got moved to another GP for the last 8 months and he's done nothing for me, thought I was having a laugh when I told him I was applying for DLA, wouldn't help my application at all. The DLA have now written to him for a report, he knows nothing of many of the problems and difficulties I face, I'm worried he will scupper my DLA claim. I have now got several Specialist Consultant letters together and sent them to the DLA and I am now going to move to another GP.
    Originally posted by tightperson
    I know there's no common sense when it comes to the DLA decision makers, but from my point of view, if your GP doesn't write a favourable report when you have letters from specialist consultants supporting you then it won't show him in a very good light. GP's have to be a jack of all trades and mostly masters of none. Whereas your specialists letters should be held in much higher regard. I hope your decision maker has some common sense and you get the DLA that you are obviously entitled to. If you're not satisfied with the outcome contact CAB ASAP and they will help you to try and get the decision overturned. Well done for making the decision to change GPs. It's a pain in the rear but good for you for doing something about it, when life is already so challenging.
    Good luck
    Ali
    Last edited by welshbit; 22-10-2008 at 11:52 PM. Reason: keyboard couldn't spell *coughs*
  • YorkiePud
    Well, I have sat here reading your messages, with tears rolling down my face.

    Not cos my arms ache, not cos my shoulders ache ... not cos I have back pain, hip pain, numbness and tingling in my feet ... not cos I am struggling to concentrate on what I am typing ... not cos my neck aches to bend down to look at me keyboard ... not cos I generally feel ill and totally exhausted ...

    But because I no longer feel on my own!!!

    Yes, I am so terribly terribly sad for each and every one of you with this stinkingly awful thing ... but I am sat here in tears thinking my God ... there ARE people out there who know what I am feeling!!

    If you have a pot on your arm or your leg ... people think something is wrong and you are in pain, but if you try to carry on and brave the pains and aches ... the IBS and all the other blooming things that come under the umbrella of fms, people look at you and don't think for one minute there could be anything wrong with you.

    So what do you do ... do you give in and spend your day moaning about it? Of course not ... you get mad ... and you fight ... right to falling in bed at night, you still feel mad when you are telling yourself you WILL sleep tonight ... even though you know damn well that no matter how many tablets you have taken, you will wake up in agony and have to move about in bed (causing more pain) ...

    And even though you know that come morning you will feel like you haven't been to bed and yet you will still have to get up, spend time getting mobile, take tablets to enable you to face doing the smallest things that you used to take for granted ... you STILL FIGHT.

    Yep, some days you wonder what the hell you are bothering for!
    You look at people in the street and think to yourself they don't know what you went through to get out there today ... you walk round the supermarket pushing your trolley and wonder if anyone realises that it is your support and without it, you might fall ....

    You look at your doctor and wonder if they truly believe what you are saying ... you tell them that it is NO fun being you .... that you wouldn't choose to be like this ... to struggle every minute ... to not know from hour to hour how you are going to be ... to not dare to go anywhere incase you are too ill to get back home ...

    To not be able to do the things you used to do ... and when they say have a massage as though it will cure everything, you have to remind them that if someone touches any of your pressure points, you will go through the roof with pain, so it isn't an option, you realise they don't know as much as you would hope they knew ...

    And then you realise .. and it hits you hard ... that you are fighting this on your own ... and that realisation hits you like a brick to the stomach ... (well, can it make you be in any more pain than you already are in?!) ... and some people give in ...

    But others fight for even half an hour of "normal" ... for me that is around midday ... come 2pm the exhaustion comes over me and I can't do anything else. I can't make an appointment on a morning because it takes about 2 hours to get mobile ... I can't make one on an afternoon because I know I am just in "exhaustion/have had enough" mode ... and am fit for nothing ... even the 18 tablets a day won't combat that!!

    But you know ... at 36 years of age, having had this since 1993 after a car accident, I am more mad than anything else ... and in a way, I have turned that anger into a crutch ... it makes me stubborn as hell and it makes me WANT to fight .. you can fight through the pain and the aches and you can fight even when you think your last sap of energy is used up ... keep going 5 minutes more ... then rest .... tomorrow, if you keep going 6 minutes more than when the cut off point kicks in, it is an achievement ... the next day you might not be able to ... grab what you can ... know that you will be in pain whether you sit in a chair or whether you try to do something.

    So try to do something. You might not manage to do what you want to do ... but at least it keeps your inner spirit strong .. and believe me, you need to stay strong ... you need to find other ways to "live" .... to "exist" ...

    And believe me, I know it isn't easy. Sometimes I can't do anything at all ... so do what you can on your good days, and if you don't have good days, then do what you can in your good half hours! But try to do something ... even if it is making a cuppa ... keep fighting ... keep strong ...

    ... and take heart and comfort from knowing you aren't on your own!
    It's meant so much to me to learn that tonight, reading this thread!

    Take care and keep your chins up ... xxx
    Last edited by YorkiePud; 22-10-2008 at 11:58 PM. Reason: spelling!
  • tightperson
    Well, I have sat here reading your messages, with tears rolling down my face.

    Take care and keep your chins up ... xxx
    Originally posted by YorkiePud
    Well said YorkiePud, like you say it's good to know there are others out there fighting the same battle.

    The funniest thing, well thing I was most embarrased about, I have done since having FMS was taking a thick cushion to sit on at an IS Tribunal (which I won) to sit on in the waiting room and Tribunal as I have so much buttock pain. I kept looking at everyone thinking they were thinking I had bad piles.
    Last edited by tightperson; 23-10-2008 at 12:17 AM.
  • tightperson
    I know there's no common sense when it comes to the DLA decision makers, but from my point of view, if your GP doesn't write a favourable report when you have letters from specialist consultants supporting you then it won't show him in a very good light. GP's have to be a jack of all trades and mostly masters of none. Whereas your specialists letters should be held in much higher regard. I hope your decision maker has some common sense and you get the DLA that you are obviously entitled to. If you're not satisfied with the outcome contact CAB ASAP and they will help you to try and get the decision overturned. Well done for making the decision to change GPs. It's a pain in the rear but good for you for doing something about it, when life is already so challenging.
    Good luck
    Ali
    Originally posted by welshbit
    Thanks Ali. My GP's going away for half term so I'm seeing another next week so it makes it a good & easier time for me to change. If I don't get the DLA I think I should get I shall definately go to tribunal and get the CAB involved.
  • grandma3
    I have not been diagnosed with FM, but I am sure I have it. I have been diagnosed with underactive thyroid, diabetes, arthritis & oestioporosis. I have had 2 spine ops, and have metal rods and 6 metal screws in my spine. I am on morphine and paracetimol for the pain all over my body, I feel bad as I am dog tired most of the day, and dont sleep at night. I find I cannot pace myself and am always in agony. I attend the pain clinic, have a TENS machine on most of the time, and have injections into my spine, but I am sure I have FM, I am off to my GP and see if I cannot be tested for FM. I would love to keep in touch, I feel like I have no life and get very down, it is such a lovely surprise to find this site and read all your messages, Yes I would love to be in touch with anyone wishing to chat with me. Bye and thanks for taking the time to reach out.
    • bigzippy
    • By bigzippy 23rd Oct 08, 1:35 AM
    • 4,033 Posts
    • 15,643 Thanks
    bigzippy
    Hi, I'm 26 and I've finally been diagnosed with Fibro (after, now looking back, many years!) as well as ME/CFS and IBS (again after many years).
    I take amytriptyline for the fibro - and the doc has now given me a variety of mg of tablets so I can "find my own level" which I think is hilarious! It still doesn't get away from the fact that it seems to be a trade off though: I can be awake and in pain (having too little a dose) or asleep/completely zombified and have manageable pain (having taken a little too much). There doesn't (as yet) seem to be a happy medium (but then that also seems the case for levels of activity, esp with the ME).
    As for the benefits system, it's probably better not to get me started! At the moment (only just) I get the lowest level of DLA but have turned my mobility application down. I'm hoping that as I nearly collapsed in the DSS required medical exam yesterday they might overturn that decision. If it goes on unsuccessful much more I shall be visiting the CAB for backup. I'm interested that Welshbit says a letter from the GP will sway the blue badge folk - I shall look into that.
    As to vivatifosi and the enthusiasm of Welshbit - I thoroughly recommend checking out the other products on that site too... one of my favourites is "my disabling chronic illness is more real than your imaginary medical expertise" but there are others too
    I also recommend, to all you out there with an invisible illness... check out butyoudontlooksick.com and have a look at the Spoons Theory (http://www.butyoudontlooksick.com/the_spoon_theory/) I found it a fantastic way to explain to people about living with ME (for example).
    Might help..? :rolleyes:
  • survivor13
    hi fellow fibromyalgics!
    I have had FMS for nearly 25 years along with Basilar Migraine, Spinal Scoliosis, Costachondritis, 5 spinal discs which are either moving around/discintigrating/or constantly slipping out of position (ouch) among a few other generalised Fibromyalgia symptoms which are common to many and a complete pain in the wherever lol.
    As you all know managing FMS is all about finding what works for you and pacing yourself, i have never quite got the hang of the pacing thing as if i feel half human i do far too much then suffer for days afterwards, its hard to stop yourself from overdoing things when you have had an enforced period of non activity, been stuck in bed and going out of your mind for a few days or weeks.
    I tend to take each day as it comes, dont plan ahead and try to be as positive as i can be, i concentrate on what i can acheive and never on what i cant, i find this is a big help as if you dwell on what you cant do it is a depressing road to follow.
    I am blessed with a very supportive and helpful husband and family which certainly helps and a fantastic GP, the amount of people i chat to on FMS chat/message forums who have a GP who does'nt beleive FMS exists or prescribes paracetamol for pain etc is unbeleivable.
    I take quite a lot of medication, pain meds, sleepers etc but i am a beleiver in life is for living, i refuse to just exist and sit in the corner rocking so where the choice is personal re: medication i feel that if a drug keeps me upright, on my feet and functioning then i will take it, life is too short.
    Hi to all fellow fibromyalgics and the best of luck to you all each day in the fight for a pain free normal life whatever that may be lol
    You never hear of an FMS sufferer who has ever been lazy or inactive do you? it only hits the most active of us which is the cruel side to being fibromyalgic.
    best wishes and kind regards to all
    Survivor (cos i am one)
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