Are you in the UK?? and suffer from Fibro??

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Q&A | Fibromyalgia General Discussion | Are you in the UK?? and suffer from Fibro??

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Name: vlg Title of Question: Are you in the UK?? and suffer from Fibro??

Question: I am hoping that someone on here who also has fibromyalgia is living in the UK?!!! All people I seem to see messages from are in USA, I need to speak to anyone who has help with DLA or sickness from UK please thank you vlg ?

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Name: hellou | Date: July 6, 2008, 17:42

Answer: Hi I am UK sufferer but do not claim DLA sorry can't help with that but just to let you know that i am UK and on here to. best wishes =

Name: vlg | Date: July 8, 2008, 16:25

Answer: hi hellou i am so pleased to meet someone from the uk!! Sorry tho that you are suffering too!! Everyone on here has made me so welcome and I felt guilty asking for a fellow brit, I hope no-one takes offence!! best wishes to you =

Name: Wheeto | Date: July 10, 2008, 7:56

Answer: I'm in the UK! I haven't been diagnosed yet but all my symptoms seem to fit. I've got my second appointment with a rheumatologist tonight. I had one in April but they just put me on anti-inflammatories and told me to come back in four months. I've got so much worse since then that I can't wait til 20 August for my next NHS appointment so am having a private consultation to try to figure out what is wrong with me. I mainly suffer from terrible aching and stiffness but all the arthritis tests have been negative and I don't show any inflammation. Doctors seem puzzled. Anyway I'll report back on what the consultant says tonight. Good luck with your treatment - as usual the research and understanding in the US seems to be far in advance of our own. Thanks, Laura =

Name: kathleen Paterson | Date: July 10, 2008, 8:27

Answer: Hi I am in glasgow but not on benefits , I am working but it is a great struggle all of the time. Laura I have had many tests , but it is one of these mystery illnesses ,rule everything else out and you either have fybro or M. E.,. I too suffer great stiffening of muscles as if they have turned to concrete and chronic pain all over my body , unfortunately I seem to be getting worse . When I first took ill I went to my doc with a list of no less than 33 symptoms , many of them strange and weird sensations. All tests I have had done are negative apart from A.N.A POSITIVE and underactive thyroid. I was told half the population could be A.N.A POSITIVE for no apparent reason. good luck =

Name: lynda66 | Date: July 25, 2008, 15:35

Answer: hi, what is it you need to know?, i'm in the uk =

Name: Belinda Darrington | Date: July 26, 2008, 16:27

Answer: Hi there, yes, I live in UK - Cumbria. I'm lucky, I don't have to claim benefit any more because, although I don't earn much, my partner brings in the main wage at the moment, so sorry can't help with that. I work from home as an artist - I couldn't hold down a full time job. I believe I have had FM since a trauma as a child - I'm 43 now and have only recently been diagnosed with it, and that was only because I decided to list all my symptoms (nearly 50!) and take the list in to the doctor. For years now I've had all sorts of tests for all sorts of symptoms, and even an operation on my nose to try and sort out my dizziness (which of course didn't! - it was a waste of time!). Finally, when I put everything down on a single list, the penny dropped! It was blindingly obvious, but all the GPs I have ever seen have only ever foccused on one thing at a time, and have never let me describe all the other symptoms to them - partly due to lack of time in an appointment, and partly because I think they thought I was being a winger (I know I sound Like it here, but I'm nt really!)! And even now, all the doctors I've seen about it say I know more about FM than they due, and they don't seem interested in studying it. Some of them still don't believe it exists! There are no support groups around here, and no proffesional at all to talk to about it. Sorry everyone for that explosion of p****d offness, but I just don't really have anyone else to talk to about it who understands. And so when I found this forum, I was so relieved that I could talk to other people who know how I'm feeling. Having FM in the UK is a very lonely and frustrating thing. But I wish you all well, and hope that soon we will have a support system closer to that of our friends in the USA. Meanwhile, if there's anyone else anywhere near Carlisle, I'd love to hear from you! =

Name: kathleen Paterson | Date: July 28, 2008, 4:16

Answer: Hi Belinda I am in glasgow . I have suffered this dreadful illness for 3 years now . When I first went to doctor I had the most horrendous headache , the pressure was unbearable on the back and top of my head. I was sent to hospital eventually as things just went from bad to worse. kept in overnight then had to wait 6 months for rheumatology appointment . When I went there I wrote everything down , there was so much wrong I knew I would forget what I had to say. The doctor said there is 33 things on this list there is no illness that has these many symtoms, they x rayed my head and inside my mouth , anyway coudnt find anything apart from thyroid underactive , which I was already on treatment for . Continous visits to doctor he diagnosed chronic fatigue or fybromyalgia same thing according to him, he says your body is like a computor , the casing looks fine to everyone but your autonomic nervous system is out of control . I am plagued with constant headaches , muscle stiffening , vibrations , the list is endless . the only thing I can say is I had this 16 years ago and it went after a year , I did not have as many symtoms then though , Take care Belinda please mail me back and tell me some of your symtoms Kathy =

Name: Belinda Darrington | Date: July 28, 2008, 16:56

Answer: Hi Kathy, thankyou sooo much for responding! I've been feeling close to tears all day - for several days now I've had terrible pain in my shoulder and up my neck. It feels like someone is following me around with a knife stabbing me every few seconds in the back of my shoulder! I've also had tendonitis in my elbow in the same arm for weeks, so now my whole arm aches. Today I was so fed up and exhausted by it all, I just had to go to bed for most of the day. I tend to need a couple of hours sleep in the afternoons - I just can't stay awake, and I sleep really badly at night and am plagued with terrible, vivid dreams. When I saw you had responded to me, I was so overwhelmed to finally have someone else to talk to about it without feeling like a whining, lazy, hypochondriac! Thank you so much!! I get the same terrible headaches - it seems to come from my neck and spread up the back and sides of my head, giving me earache and making me nauseous. I've had them on and off for many years - I used to think they were migraines. Like you, I was admitted to hospital and kept in overnight for any test they could think of, which was quite frightening. I went to see the doctor about the headaches and pains in my chest (for the umpteenth time), and he told me to go straight down to A&E! Then they gave me an MRI scan, which showed I had slight damage to the base of my neck, but was told by some prat of a neurologist that he didn't believe that headaches could come from the neck. I also had emg tests for the numbness in my fingers. And all sorts of blood tests, which showed an imbalance in cortisol and other hormones? - I now appear to be having an early menopause too (43)! Also like you, I have an underactive thyroid, but this is because I had surgery for it being overactive about ten years ago. I'm just so muddled up with it all, I think I've figured out from my symptoms ( which had mostly been put down to depression) that it all started when I was about 9. I believe my mum and my brother also have it, but they won't listen to me. If it hadn't been for somehting telling me to list all my symptoms last year and insisting that I felt there must be a conection between them all, I would still be undiagnosed and banging my head against a wall! Even though most poelpe still don't understand and get sick of me moaning, I'm glad I know at last what it is - perhaps now I can stop beating myself up for being useless and lazy and learn to pace myself. With me, the illness seems to have changed and become worse gradually with each thing that aggravates it. I've just moved house so I'm feeling quite crap at the moment. It makes me so angry and depressed that we are not listened to or believed, even by the medical proffesion. My last doctor told me that they don't teach anything about FM in medical college, so that's why they still don't really believe in it. It was a new young doctor - keen to make his mark, that diagnosed it, but he had to google it while I was sitting there to find out about it and show me what it was,and even then, because it's all down on my records as being due to deppression, he said that the fibro was a complication of depression! There is no medical literature available on it. Now I've moved to Silloth, and have to start all over again trying to convince my new doctor that I have FM and that is why I have deppression, not the other way around, or that I'm imagining it, and being made to feel like I'm complaining about nothing! I'm so sorry for ranting on like this Kathy, but it's such a RELIEF to let it all gush out to someone who actually believes me!! Sorry too about my spelling - I've tried to correct most of it - I seem to be getting progressively dyslexic, having never been before! OK, I'll stop now!! Thank you again! Lots of love, Belinda. =

Name: Belinda Darrington | Date: July 28, 2008, 16:58

Answer: Oh my God, I've just seen how much I've written - so sorry for gabbing on so!! Belinda x =

Name: kathleen Paterson | Date: July 29, 2008, 4:38

Answer: Hi Belinda you can rant to me anytime i feel exactly like you , you need somebody who knows what you are going. my doctor is very good but he admitted to me that they do not like telling folk they have this illness and then have to say there is probably nothing i can do to help you . i was at him last week in tears , he told me that the illness was starting to depress me and gave me anti depressant which made me ill , i cant seem to tolerate anything as i a have a constant feeling of nausea. i have started back on the ones he gave me last year cipralex a mild dose to see if they can help with pain, as the pain seems to be getting worse. I am 51and work full time it is a great struggle , i work in the benefits agency and my boss is excellent with me , days i have to leave early or i phone in as its just to much , my work keeps me going as i feel it take s my mind off all the abnormal sensations , recently i have been struggling more though specially with stiffening of my muscles and constant presure on my body it so frightening. today i have pricking on the top of my head sometimes i just feel like screaming as i go by folk and they say oh your looking great have you been on holiday , the other night i was so bad with shaking i had a bath and put fake tan on ny face just anything to take my mind off things, nobody knows behind the mask the torture we are going through yesterday i must have a had at least 40 hot flushes. well thats me had my rant keep in touch belinda tkae care kathy my spelling is all back to front as well =

Name: kathleen Paterson | Date: July 29, 2008, 5:19

Answer: Belinda i think my mum may have had it as well she used to complian constantly of pressure in her head and ears only to be told she had a hormone imbalance. and by the way you are not a lazy hypochondriac , you are suffering from one of the most complex syndromes around and its abou time there was more research done in to it, when i had it 16 years ago i was told by a professor in the southern general hospital in glasgow , in not so mny words there was no such thing as chronic fatigue it was all in my head. kathy =

Name: Belinda Darrington | Date: July 29, 2008, 6:22

Answer: Hi Kathy. You're so right, it's great to have a fellow sufferer to talk to, compare notes with, and learn from. I take it, from the times on your messages that you don't sleep well either. I wake up feeling really crap every morning. But I'm really lucky that I work mostly from home, so I can adjust to the day at my own pace. I have a collie with hip displacia (although I have read that it may well not be just humans that suffer from fibro, and she does seem to get depressed and sleeps a lot!) who is also not a morning person, so we snuggle up on the sofa and watch morning TV for a while. I have 2 dogs and 3 cats and I'm so glad I have them, they take care of me and get me through the day. My partner is a lorry driver so he's away all week. He tries to understand, and is very patient with me, bless him, but, as you know, if you don't have it, you just can't grasp the constantness of it - there's allways something that hurts or you're tired or ratty or withdrawn...It was worse before it was diagnosed as an actual thing though. Befor ehtta (that was meant to say "before that"!! I used to be so good at spelling!) everyone just thought I was always moaning or feeling sorry for myself over nothing. You're doctor has confirmed what I had suspected - that they don't like to diagnose you with something they can't do anything about, I also think their ego dosn't like to admit that they don't know anything about it - we are supposed to see them as demi-gods who know everything and hold our lives in their hands, so it stands to reason that they'd rather tell you it's something they have a good grasp of, ie depression. I have found it interesting to study it though, apparently it is hereditary, but it takes some kind of trauma to trigger it. Mine was emotional, at around 9 years old, and, oddly, I think my mum's was at 9 as well, when her dad died suddenly. I'm slowly getting her to admit that she has it - we've always had very similar symptoms, but she's of the opinion that she's learnt to know her body, and since there's nothing that can be done, there's no point dwelling on it. My brother refuses to think about it - men! As to anti-deppresants - because I was always told it was depression and anxiety, I've been on all sorts, but the only one that didn't make me feel spacy is Efexor (venlafaxine). I'm on that now, and it has definately helped a lot with the pain. I increased it recently because I knew the stress of moving would make it worse. I would take a higher dose all the time, but it makes me shaky, so I try to find a happyish medium. Do you think the menopause is linked ie hot flushes etc. I have had night-sweats for as long as I can remember, but started missing periods about 4 years ago, now I have gone seven months without one and suffer horrible hot- flushes. I didn't want to go on HRT, but I've been taking Black Cohosh for a while now and it has definately helped a lot. Ok, I'll go and try and summon the energy to do something - the good thing I do find when I have some kind of out side job is that you're motivation is better becuse you have to get yourself going. I'm at home all the time at the moment, and I do tend to slob about most of the day. I think maybe I need to find a part-time job. But I never fit in anywhere - poeple think I'm weird because my social skills are crap and I get very panicky. By the way, if you would like to email me, you can google my name and my website should come up (animal portraits) with my details on - it would be good to have an email buddy to moan to, and maybe we could even meet up one day, as we live not too far apart. Take care, love (to anyone else who may be reading this too) Belinda =

Name: Gabbie | Date: July 29, 2008, 21:12

Answer: Hi Belinda. I read your posts and can relate to so many of the things that you have said. You questioned the flushes/nite sweats and that is definately related to menopause and unfortunately can go on for a very long time. It will lessen, but I have found that I still get it especially when we have season changes (that makes the fibro worse for me too). Fibro can cause some depression, but gee wiz, with all that we have to go through, I think it's normal. However, I will say that it's important that you not let that get a hold on you because I think outlook is so very important. After feeling sorry for myself for a while, I decided to pick up the pieces and push myself to get going because I refuse to let the fibro win. I have some pretty awful times, but have found that the better my outlook, the better my days are. I googled your site because I was so interested in seeing your animal portraits. They are beautiful. I have been oil painting for about 18 years. I did a wedding portrait of my daughter and her husband a couple of years ago which I gave to them on their 1st anniversary. I also enjoy painting animals so I really liked looking through your work. With a talent like yours, I wouldn't give a second thought to anyone that thinks you are weird or questions your social skills. We are supposed to be a little "different" because we see things through the eyes of an artist, the details, the colors, the shadowing and the unbelievable beauty of things around us. And you know what Belinda, I think that's something that we can be happy and thankful for. Keep your talent going, even on the days that it hurts to hold that paint brush because you have a gift and you need to continue on. =

Name: kathleen Paterson | Date: July 30, 2008, 3:54

Answer: Hi Belinda i did e mail you dont know if you got it and gabbie is right your portraits are beautiful . kathy =

Name: kathleen Paterson | Date: July 30, 2008, 4:22

Answer: Hi Gabbie I would just like to say I am 51 I have not had a period in 7 years I used to have hot flushes but they were long gone until I was brought down with this . But I think you are right menopause and fybro are not a good mix. i beleive this all started when I had a problem with underactive thryoid, anything I have read seems to point to thyroid disorder , my doc says my thryoid is fine on my present medication , but i just know i have not been right in 3 years, do yoyu ever suffer of pressure in your head ? take care kathy =

Name: Belinda Darrington | Date: July 30, 2008, 6:50

Answer: Hi Kathy and Gabbie, Thank you both so much for your kindness and support. I think its wonderful how an illness can bring strangers together with so much love. I started the day feeling crap, but you have cheered me up! Kathy, I have emailed you - sorry I didn't respond yesterday - I was feeling too pathetic and gloomy! Gabbie, I would love to see your paintings, perhaps you could email some to me. Oils are a tricky medium - I've never quite got to grips with them. You're absolutely right about having a positive outlook, and the gift we artists have for seeing the beauty in everything. I'm always wandering around examining and sniffing and touching things, and it makes me feel like a child again. And I notice the beauty in rainy days and buildings and people, and try to see the positive in things that make other people moan. "Normal" people do think I'm weird, but I know it is partly an arty thing, because the one place I did fit in was art college. Everyone there accepted you for who you were, and rejoiced in the quirkiness of the way you saw things - the quirkier the better! I know I'm lucky to be able to do what I love doing. But I have always struggled with self-esteem and am crap at selling myself. Consequently, I've never been able to earn a living at it, and this has made my symptoms worse. About 9 years ago, I had a complete meltdown, and spent the days huddled in a corner rocking. But even that was a blessing, because I began to be very aggoraphobic, so I made myself sign up for a part-time art course to get me out of the house. I missed most of the first year because I couldn't get out of the front door, but I perservered and went on to take a Fine Art degree, and then a PGCE in adult ed'. Now I teach a bit too, which is something I never thought I would be able to do! So, I firmly believe that our struggles make us better, stronger people, who are much better equipt to help others. Lovely to speak to you, please write back or email me. Love Belinda =

Name: rubygypsy | Date: July 30, 2008, 9:58

Answer: hi contact me now had lots of experiance in dla........... ruby =

Name: Gabbie | Date: July 30, 2008, 19:47

Answer: Belinda I had to chuckle when I read how you sniff, touch and examine things....I do to and when I do, I also envision how I might paint whatever it is I'm looking at. I remember when I first went to art class, my teacher told me that I'd "never look at clouds the same way again". She was right. By the way, My art teacher is the aunt of a friend who pretty much pushed me to go to class to try my hand at painting. The only reason I went was because this friend was, would you believe, agoraphobic and she wanted to go to the classes and couldn't go alone. So off I went, not thinking how much I'd enjoy it. I'm really proud of my work and as soon as I can figure out how to send you a picture of one of my creations, I will. As far as you having low self-esteem, take a moment and look at your paintings and what talent you have. You don't necessarily have to make a living at it (I don't), just consider it a hobby (I do). I am assuming that what you sometimes teach is art and I think that just earning a degree for that is an accomplishment in itself. Without my talented teacher and her help I never would have been able to develop my painting skills and I will be forever grateful to her. Have you ever considered having an art show of your own? Our public library allows our town residents to display the things that they do, sewing, needlework, crafts etc. and maybe where you live you may be able to show your paintings somewhere. I have to agree that sometimes our struggles make us stronger. I know fibro has pushed me to push myself. I have found that the more upbeat I am, the more I keep moving and the less I talk about it with people that don't "get it" anyway, the better I am. I also find this forum to be an unbelieveable "therapy" to share and compare with others that have fibro too. Have a good night! =

Name: Gabbie | Date: July 30, 2008, 20:09

Answer: Kathy, I'm in my mid 50's and have had the hot flashes for several years. They have gotten a little less (I was getting them every 10 minutes....eeesch) and some days I don't get them at all, but have definately found that it's worse when we have season changes and the fibro symptoms seems to get worse also. Allowing yourself to become upset, frustrated etc. can also bring on hot flashes. I have also found that if I have a glass of wine, I spend the next day hot flashing/night sweating all over the place! Monostat makes a product called Soy Menopause and that seems to help. Don't get discouraged, eventually the flashes will slow down. There is a light at the end of that sweaty tunnel, ha ha! Yes, I do experience some pressure in my head from time to time. Sometimes I feel the pressure, followed by a little nausea and a slight light-headedness. That wonderful feeling is due to the fibro. I also get a little "spacey" at times and my thinking is a little bit jumbled. Thyroid problems can also cause some of the same problems as fibro and even similar to menopause symptoms. I sometimes get that prickly sensation you mentioned, at the back of my head and it makes me feel very itchy. I find that keeping a sense of humor and determination to keep going definately gives me much better days! Wishing you better days also. =

Name: kathleen Paterson | Date: July 31, 2008, 5:15

Answer: THANKS FOR RESPONDING GABBIE , I AM OF THE SAME OPPINION AS YOURSELF , TRY AND KEEP POSITIVE , AND HAVING A SENSE OF HUMOUR DOES HELP, BUT AT THE MOMENT I AM REALLY STRUGGLING WITH THE PRESSURE SENSATIONS IT DOES REALLY FRIGHTEN ME SOMETIMES . YOU TAKE CARE KATHY =

Name: swm | Date: July 31, 2008, 18:24

Answer: hi vig im from the uk ive just joined tonight.i dont know about sickness benifits.i just get ssp at the moment. but i know this wont last much longer is fibromyalgia reconised as a sickness or disability with the dwp? =

Name: Gabbie | Date: August 1, 2008, 13:58

Answer: Hello Kathy, I can understand what it's like to really not feel good. Right now, I'm doing better, so I guess I'm a little over zealous with my posts. You talked about the pressure in your head and I'm wondering where you are feeling it. I've had some really awful headaches and have felt as though my head is about to explode. When I get my hair cut, there is a girl that does the shampooing and she loves to give a head/neck massage but I've had to pass on that because I end up with a headache that's so excruiciating I can barely function. I think that's because there are some of those pressure points on the back of the neck and head which I didn't originally know about. I also had migraine like headaches when the menopause symptoms were in full force so that could also be contributing to the pain that you are feeling. I have been in and out of what people call flares and right now, although I have daily symptoms, they have lessened in the last few months. I don't know if it's coinsidence, but during that time I've lost some weight by changing eating habits drastically, so I have less pressure on my joints and instead of picking on junk food or drinking sweetened soft drinks, I'm eating a lot more healthy. I know someone that also has fibro and she swears she feels better when she stays away from sugars and sticks to a healthier diet. I really didn't think that a change in diet could help and although the fibro symptoms are always with me, they have lessened in intensity, at least for now so I'm beginning to think they're something to this healthier eating thing. I am not able to take most meds as my stomach just doesn't tolerate them but I do take Tylenol PM to help me sleep and my rheumatologist gave me a prescription for Lidocaine cream that I apply to some of the pressure points, especially at the inside of the knees and elbows. I have used it on the days that the pain was really bad and it has helped. Maybe you could mention it to your doctor and see what his/her opinion is. I wish you well. =

Name: Belinda Darrington | Date: August 2, 2008, 14:55

Answer: Hi Gabbie When I sniff and examine things, I become a child, with a child's curiosity! Phil gets very embarrased when I make him do it too! As for clouds - I got so into them that I started just painting skys - no landscape - just skyscape! Now we've moved to live by the sea (Silloth in Cumbria) and of course I'm obsessed with the reflection of the sky and sunsets on the sea. Bugs are good for examing too! (except spiders, which are examined from a great distance with one eye closed!) I wish I knew how you lost weight! I have gone from 9 stone to 16 in 10 years! Granted, I was bulimic when I was 9 stone, but, even at a lofty-ish 5'10", I should be no more than 11! Unfortunately, I managed to stop the throwing up, but not the comfort eating, or, occasionally, the binging! I know you're right, though - if I lost weight it would be much more comfortable and easier on my joints - and my self-esteem. My new prat of a doctor seemed to take great delight in informing me that I was morbidly obese (which I'm not!), and that I should lose weight! Oh, is that why my clothes are all tight, I hadn't noticed! OK, I'll drop three dress sizes by next week!! Insensitive, unprofetional B*****d!!! OK, Today's whinge over, I feel better now! You're right, this is soooo therapeutic! I have a feeling that we're starting to hog all the space here, and have gone on many tangents from the original question, so, if you would like to carry on by normal email, you'll find it on my website. I feel like a spider, enticing people from here onto my own site! But I think we have a lot in common, not least a sense of humour, and I'm not sure everyone else wants to listen to us gabbing on! Speak again soon. By the way, If I take days to answer, it's because I keep loosing my internet connection! Take care Belinda x =

Name: vlg | Date: August 2, 2008, 17:25

Answer: Hi swm I am still working (or trying) and I was worried that there will be a time when i cant, which is why I was enquiring about disability allowance .I was wandering if Fibro was classed as a disability to be able to claim? I am in so much pain and so fed up with it all but I dont want to give in. The doc has me on 200m Tramadol every 12 hours time released and I can take paracetamol on top when I cant cope with the pain, I also take Amitryptaline, still cant sleep well at night as my body stiffens and I need to get up and move, this is every hour, I do get back off to sleep but it doesnt last long and Im up again...oh to go to bed and have a good night sleep,, Sorry to have gone on a bit!!!! I would be grateful if anyone can tell me if Fibro is classed as an illness to claim help if and when its needed!!!!! many thanks for reading this vls =

Name: vlg | Date: August 2, 2008, 17:28

Answer: sorry Ruby Ive just noticed you offering help with DLA I would be grateful if you could email me anything please many thanks vlg =

Name: lynda66 | Date: August 4, 2008, 19:18

Answer: fms is a disability as far as the DSS is concerned, when you fill in the forms, think of your worst day ever with FMS and don't make out you can do stuff if you can't ..... if you tell how bad it actually is, then you should be fine. if they refuse, then get more info from doctors/specialists etc. and ask them to look at it again, they will do that and hopefully you will be succesful at this stage .... you may also be asked to attend a medical. if they still refuse after that, you need to appeal, if this is the case, you need to get in touch with your local welfare rights centre (usually linked to council) they will then help you fill in the forms, for the appeal, and support you through it. you will get it eventually, though you may be lucky and get yours passed straight away good luck, let us know if theres anything else you need to know Lynda xx =

Name: kathleen Paterson | Date: August 5, 2008, 8:17

Answer: Hi Gabbie thanks again for your response , i have been eating very healthly at the moment as i must say i have a terrible sweet tooth. i dont understand when people say they have a flare up as i have been in constant pain since i took this 3 years ago there does not seem to be any resbite for me i am afraid, but it does help to chat to folk that know what you are suffering. I am supposed to be going on holiday next week but i am just in 2 minds now as i just cand feeling ill all the time . take care kathy =

Name: Gabbie | Date: August 7, 2008, 19:54

Answer: Hi Kathy, I didn't understand the term flare either because I also have constant pain and I asked about it my self on this forum several months ago. I believe a flare-up is when you have pretty much all the symptoms in full force all going at the same time. Stress, over-exertion, excessive tiredness and even the weather changes can all trigger a flare. I've been there and right now I'm better so that's why I'm a little over-zealous as I said in an earlier post. I do have constant pain and tingling (that has never gone away) and a couple other symptoms but compared to the way I was last year, what I am feeling is something that I have learned to live with. It's always a daily "something" going on, but I have come to terms with the fibro and am determined to not let it win. The intensity of my symptoms and the type of symptoms keep changing so I pretty much take it one day at a time and try to find the best way to keep going. I truly hope that you're holiday with be a restful one and you will feel better getting away from your daily routine. Be well. =

Name: kathleen Paterson | Date: August 8, 2008, 5:32

Answer: thanks gabbie i think maybe a flare up is what you are saying , my head and neck are worse at the moment and that seems to make everything else worse . i am as of the same opinion as you i just keep going about my daily routine going to work ect, i guess people must think she is not as bad as she is saying or she woudnt be able to make work , in a strange way my work takes my mind off of this otherwise i would be obsessed thinking about symtoms you take care kathy =

Name: goldilox | Date: August 10, 2008, 7:17

Answer: Hi vlg :) I'm in Gloucester in the UK, and I did go through the DLA claim, although I don't claim it anymore. Just be completely honest about your symptoms and don't downplay anything. Remember that it IS a recognised debilitating condition, and you're entitled to claim as long as you get the certificates from your doctor. There's no point forcing yourself through working - which I'm certain only contributes to the symptoms. Let me know if you have any questions. And take good care of yourself - you're worth it :) xxx =

Name: vlg | Date: August 13, 2008, 17:50

Answer: hello again Goldilocks and Ruby, is there a way we can exchange emails on here only i would like to ask your advice but dont really want to go into too much detail on here and also bore other people. I DONT WANT TO DO ANYTHING THE SITE DOESNT AGREE WITH if it is ok to exchange emails I will happily put mine on here many thanks =

Name: angela bea | Date: August 15, 2008, 10:59

Answer: Hello Vig. I'm as British as they come and have just joined this site. Yes also I've just been awarded DLA after a few years of jibbing. It is going to make an enormous difference to my life and I would urge you to fight for it. Get back if you want more info or support, Angela =

Name: goldilox | Date: August 17, 2008, 12:44

Answer: vlg, I'd be very happy to help you, but yes, I also don't want to go against any forum rules. It may be an idea to ask the moderator (there's a contact form), if you can share your email address. xxx =

Name: vlg | Date: August 17, 2008, 17:11

Answer: Hello godilox I have put in a queery to the editor about exchanging emails will get back to you when I receive a reply thanks again =

Name: goldilox | Date: August 23, 2008, 2:53

Answer: Hello again vlg :) I'm actually wondering if this site is still manned. I sent a message to the editor about a week ago and still haven't received a reply. They may no longer be servicing it? Well, if the editor is still around, please feel free to delete this information if it's against your policy, but at least vlg can hopefully contact me in the meantime. I'm hesitant to post my personal email address here because of spam robots (gosh it sounds like paranoid sci-fi lol), but you can contact me through the form on my website: www.yourselfempowered.com I'll then send you an email from my personal email account, and we can take it from there. xxx =

Name: vlg | Date: August 27, 2008, 15:32

Answer: Thanks Goldilox I still havent received a reply so think you could be right!! I shall contact you through the website as you suggested thanks again vlg =

Name: vlg | Date: August 27, 2008, 15:48

Answer: sorry to be pain Goldilox!! Im not sure which of the iboxes to fill in, is it the kinetikus or one of the others plse =