Hi there, 

I'm Suzy, I have Fibromyalgia, which I've had for 9 years now, as well as Lupus, an underactive thyroid and a few other things. I'm having a massive flare at the moment! I know from experience that it can be quite lonely sometimes dealing with the fatigue and pain and it would be lovely to chat to other people who understand! Please feel free to send me a message, I'd love to hear from you 

Suzy x

72 Replies

  • Morning Suzie and welcome.

    HAve to get up tomorrow going on a car treasure hunt and just so wide awake. Feel like doing something but do not want to wake the neighbours. Live in a flat.

  • Hi Betty, thanks for your reply and welcome :)

    A car treasure hunt?! Sounds interesting! :) I live in a flat also and I'm very much a night owl - damn insomnia! Do you have to wake up early?

  • well awake now, about 1 hour too early. However have no cold water (again) so trying to get hold of the plumber. Water is stored in a tank which fills at night and last night did not work again. Plenty of bottle water but shower was uncomfortable as only hot water.

  • Hello again Betty - sorry to hear about the cold water situation. I bet that's just what you need right now! Is someone coming to fix it? How are you feeling today?

  • well the owner came told me that i had to run all the taps for 5 minutes to clear the air bubbles and now instead of a dribble of water there is none at all. AHHHHHHHHHHHHHH

  • Oh for goodness sake! You poor thing! Do you have any bottled water so you can make yourself a cup of tea or a hot water bottle? X

  • Yes still got the water in the hot water tank and over 8 bottles of drinking water but can't do the washing up, or flush. There is a cafe down stairs so I do use their facilities but feel I have to buy something.

    The flat is on the same level as the reservoir and so to put water in my cold water tank need a pump. The pump only works at night.

    it is over 20 degrees here so hot water bottle not needed - cold shower more missed.

    PS I am not in the UK

  • Hi Betty67

    So sorry to read that you are having sleep problems, hope that you can manage some real quality sleep soon x

  • my fault had coffee too late last night but have trouble with the water supply again.

  • Hi Bellaflowe

    I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I genuinely hope that you find the forum useful, informative and loads of fun!

    I have pasted you a link below to our mother site FibroAction and it contains loads of useful Fibro information from symptoms and treatments through to Fibro Groups and benefits:

    There are loads of lovely and charming ladies on the forum who will be along to say hello tomorrow, as they are all probably snoring away at the moment! Sadly, I am one of life's insomniacs and never sleep very much, not for the lack of trying.

    I genuinely look forward to bumping into you around the forum.

    All my hopes and dreams for you

    Ken x

  • Hi Ken! Thank you for such a lovely welcome, it's greatly appreciated :) Thanks for the link, I'll give it a look, I'm sure it will be very helpful!

    I'm not so great at the moment and haven't been for the past 5/6 months since being diagnosed with CNS Lupus, although I've had Lupus for years before that. It has flared up my fibromyalgia so I'm aching and exhausted all the time and at my wits end! But strangely enough I still can't sleep! So I sympathise with you on that one, definitely!

    How are you feeling? Hopefully not going through a bad spell?

    I can't wait to meet everybody else when they wake up! Hopefully they are all having a good rest, god only knows that's a rarity!

    Thank you for your kindness, you have genuinely cheered me up :) x

  • Hi Bellaflowe!

    Lovely that you have joined this group and a good morning to you! Sounds good a treasure hunt - I love them! I hope that you are soon feeling a bit better and know what you are feeling. I don't have Lupus but I have Fibro, Hashimotos & Arthritis. Make sure you try to pace yourself especially if you cannot sleep, I am awake on & off all night too, so there is always help on this great site.

    Take care x

  • Hi Castlepoint!

    Thank you for such a lovely welcome :) I hope you are having a good day? I am having a bed day today - I feel furious at myself for doing nothing but today I'm just so sore so I won't be too hard on myself! I also have arthritis so I know your pain - do you find heat pads or ice make a difference? Forgive my ignorance - what is hashimotos? I have heard the name but I'm not sure of anything else!

    Hoping you are having a lovely day!

    Suzy x

  • Hi Suzy,

    Hashimoto's is the Autoimmune Thyroid - same as hypothyroid, but I think that some people have a low thyroid because of other conditions but mine was detected by high levels of antibodies for it. I find heat better - if its a cold day if I wear long johns or tights under my clothes it is far better & my joints seem less painful !!!! ;-)).

    I recently (well about 9 months ago) started a Gluten Free diet & been so much better even less swelling of my joints., so I am sticking with it!

    I hope that you feel better tomorrow & are able to get going, I am working tomorrow just for half a day doing art with learners with disabilities.

    You take Care

    Elaine x

  • Hi Elaine!

    Oh dear, hopefully you are on medication for it and regular blood tests?The cold weather is definitely bad for joints! I think I'll try wearing tights or long johns in future - thanks for the tip!

    I'm glad that a gluten free diet is working so well for you! Do you find it difficult to eat what you want some days or is it a relatively easy diet to follow?

    I managed to get out and do my food shop aswell as go to another doc appointment - boo! Now I have the mammoth task of washing my dishes and hoovering! Need to find some extra spoons today... (hope you've heard of the spoon theory or else that just sounds weird!! :))

    Oh that's great! Do you enjoy it? I'm studying art and history at uni and have always been interested in arty stuff!

    Take care, Suzy x

  • Hi again,

    I am no too bad thanks, but I have not slept for two nights so I am hoping that I can nod off at some point tonight! I am waiting to see my Neurologist again about my Migraines as the medication adds to my insomnia! My GP thinks they may be Fibro related?

    I am so sorry to read that you are not feeling so good, and I have found the more pain that I am in the less able I am to sleep! I genuinely hope that you can find some resolution and relief to the pain and manage a good quality sleep.

    There are quite a few members that I know of who also suffer with Lupus, so they will probably tell you what it is like for them? That is what is so good about the forum as we can exchange our experiences and if somebody is new to a particular illness or aspect of their illness there will always be somebody who has been through it and can offer their help and advice.

    All my hopes and dreams for you

    Ken x

  • Don't know how you cope with your pain problems hunny, but as for mine- I hate taking pain killers every day knowing what they do to my tummy- I also have Crohns Disease.. So to be honest, I have a small amount of whisky for 2 or 3 nights, enough to make me dizzy and wanting to sleep.. not the best cure but better than using chemicals.. and then I don't feel any pain for the whole night and feel great the next day- then I would leave out drinking for a few weeks and start again.. in between whisky I use 2 a night nytol, using only one per night- for 2 or 3 nights.. rotating this way stops addiction or having to use stronger products.. take care, kazz.

  • Hi Kazz! Thank you for a lovely welcome :)

    I don't like painkillers either! And

    It must be extra difficult with your Crohns disease :( You sound like you have found what really works for you which is great! A glass of wine usually sends me off to sleep if nothing else works, however sometimes even a sip can bring on a flare with me and the pain is horrendous. It honestly just depends on how my body is that day. It's very strange! Recently though I've had to start taking Dihydrocodeine for the pain... perhaps it also has something to do with the cold weather and its effect on my joints!

    How long have you had Fibro?

    Take care, Suzy x

  • I've had Crohns and Fibro for the past 20 odd years, since 1994- thereabouts.. Also found out at the time I have Sacroilluitis and one or two other problems- last "specialist" I talked too, said If I was a horse he'd shoot me, to put me out of my misery.. lightened the mood quite a lot that day..!!

  • Kazzigirl,

    I know what you mean with specialist saying that to you as I've had that said to me by my GP it does lighten the mood & momentarily it takes your mind off your suffering. Take care x

  • Hi Ken!

    I'm sorry to hear of your sleep troubles! I hope you manage to get some proper rest tonight or if that fails, I wish you happy naps!

    Hmm...I'm sorry you are having such a rotten time of it. I also have migraines and a neurologist, but this is because I have CNS lupus. I imagine that Fibro could also be the cause - it's like a vicious cycle, you are in pain so you can't sleep and because you are tired you get headaches! Which medication are you on? Do you think this is the cause of them?

    I know, it's great to have a wonderful group of people who have experienced similar situations to me :)

    Hope your pain is better today and take care,

    Suzy x

  • Hi Suzy, I am on loads of meds as I also have Osteoporosis, sciatic nerve damage, arthritis, Costachondritis, COPD and asthma! I think my meds can make me feel a lot worse sometimes? However, I have to take them or the alternative could be bleak! I have pasted my list of meds below, sorry but its long!

    Prescription Medications

    Alendronic Acid Tablets –

    70 mg Tablets. One to be taken weekly

    Accrete D3 Tablets –

    Calcium / Colecalciferol tablets. One to be taken twice daily

    Lansoprazole Tablets –

    30mg tablets. One to be taken daily

    Prednisolone Tablets –

    5 mg tablets. 10 mg to be taken daily

    Ventolin Inhaler –

    100 micrograms evohaler. Two inhalations to be taken as and when required

    Atrevent Inhaler –

    20 micrograms inhaler. Two inhalations to be taken four times a day

    Symbicort Turbohaler –

    200/6 inhalation powder. Four inhalations to be taken twice daily

    Ranitadine Tablets –

    150 mg tablets. One to be taken twice daily

    Solpadol 30mg/500mg Tablets –

    30/500mg tablets. Two to be taken four times a day as and when required

    Metoclopramide Tablets –

    10 mg tablets. One to be taken three times a day as and when required

    Fenbid Gel –

    Ibuprofen 5% Gel. Apply up to three times daily

    Nortripyline Tablets –

    25 mg tablets. Two to be taken at night

    Sumatriptam 50mg Tablets –

    One to be taken when needed. No more than 6 tablets in 24 hours

    I genuinely hope that you managed to get some sleep last night? And that you feel a bit better today?

    All my hopes and dreams for you

    Ken x

  • Oh my Ken. That is a lot of medication. I just can't imagine how you keep them straight. But obviously you do. I only take 6 meds and two of those are only as needed. My problem, hardly ever happens now, was remembering to take them.

  • Hi clare_hart

    I use my mobile phone to tell me when it is time for which medication as it has a daily planner with alarm. I would never get it right otherwise!

    I can imagine when I see my Neurologist again in a couple of weeks she will want to give me a Migraine suppressant to reduce my Sumatriptan intake, so it will be more added to my list!

    Take care

    Ken x

  • I hope your day is going well and you only have fewer meds ordered and not more. :)

    Funny you should mention Sumatriptan. As soon as my doctor gave me an Rx for it, my migraines got fewer and less debilitating, so I have not taken it yet (it is very expensive and my insurance doesn't cover very many per month).

  • I have found Sumatriptan to be wonderful, it is the only drug I have ever had that works for my Migraines! I know that it is rather expensive and that's why they want to cut my supply down?

    Ken x

  • Hi Ken!

    Sorry to hear about all of these meds that you have to take - mine is equally as long! Sometimes I forget if I've already taken certain medications as I take mine 4x a day. I think that's the thing with autoimmune disorders, there are always sister illnesses to go along with it, which is evident with you!

    I know what you mean, taking certain medications can be a bit of a double edged sword. It's an necessary evil, unfortunately.

    I slept a bit better, thankfully! Although that could be the trazadone I take which my doctor told me to up last night! Either way it helped! Still feeling rotten today though and I have a lot of chest and back pain :( Although on the plus side, I've put my heating on and it's helping my joints!

    I really hope you get a decent sleep tonight as it makes the pain so much worse, I think.

    Wishing you a peaceful sleep or if not, then happy naps,

    Suzy x

  • Thanks Suzy, I am off to bed in minute so hoepfulyl sleep awaits!

    Take care

    Ken x

  • Hope you have a peaceful sleep and much needed rest, Ken.

    Night night,

    Suzy x

  • Do you by chance have shares in pharmaceuticals :p

    How on earth do you manage to keep order, I have just remembered my amitriptylene which I should have taken hours ago. Guessvwho is going to find it hard to get up in the morning.

    Wishing you a good nights sleep with no pain...if that's too big a wish I hope you get some rest and a lesser amount of pain :)

  • He! he! I like the idea of buying some shares in the companies! I hope that you do not have any problems in the morning.

    I use my mobile phone to tell me when it is time for which medication as it has a daily planner with alarm. I would never get it right otherwise!

    Take care my friend

    Ken x

  • I tried that and it worked for a little while, then I let my battery die as I forgot to charge it and it has all gone pear shaped since :) ah well I am still here so there is hope for me :)

  • Power that puppy up.

    I don't have nearly the list of drugs, but I got so exhausted yesterday (don't remember why if there was a why) that I slept from about 6pm to 7:30am and missed 2 meds, rather important ones. Oh well.

    Wish you all good sleep and good days.

  • Hi Suzy ,my names meg ,welcome to the site,know what u mean exactly,iv currently just started on physio.

  • Hi Meg! Lovely to meet you! Ohhh I don't like physio's! I've never had a good one to this day! Have you had physio before? Suzy x

  • Ye loads,x

  • Oh sorry to hear that :( I really hope it helps you! X

  • Iv done 2days of exercises and things are a little easier,not as stiff, fingers crossed xxxxx

  • Oh that's fantastic - a step in the right direction! Just keep at it and hopefully you will feel even better! I do yoga which is amazing, it's the best form of exercise I have tried, and I've tried loads! It's not just for your body but also your mind and your mood which is wonderful :) xxx

  • Morning Morning Suzy and welcome. This is a terrific site full of very caring thoughtful people. Rotten shame we all suffer the only good thing is it is so useful to talk to one who understands.

    Please do take a moment and check out the site fibroaction,org we have a set of regulation which are very handy to have a read through. We certainly do not want you to get started in the wrong way!

    I too am a night owl though not always coherent, never the less I am about if you ned me give me a prod and I will arrive to help .s

    It is also useful to remember we are not in any way medical professionals we leave that entirely to our Doctors and specialists. So when you have a medicine query always check with your DOC.

    I am off now to start the chat space for the day come over and join me if you fancy.


  • Hi Ginsing!

    Thank you for such a lovely welcome, I really am amazed at the amount of lovely people on here!

    Thanks for the info, I will give it a read!

    I've always been a night owl, I think the problem is the pain keeps me awake. Thank you for your kindness though :)

    I'll be starting methotrexate on Monday, so it's good to hear experiences of different meds from other people who have numerous health issues like me. Everybody reacts differently to meds so it's always interesting to know their reaction from it.

    It's lovely to meet you!

    Suzy x

  • Hi Suzy, I'm sorry you are having such a bad flare at the moment. I hope that your symptoms ease soon!

    Sending you gentle hugs

    Becky xxx

  • Hi Becky!

    Thank you so much for your lovely words! You have brightened my day :) I hope you are enjoying a period of good health? God knows that can be a rarity!! :)

    I'm wondering, how do you add a profile picture? I can't figure it out haha :)

    Also sending you hugs, it's lovely to meet you :)

    Suzy xxxx

  • Hi Suzy

    Welcome to the forum. I'm sorry to hear you've been suffering and hope you got some sleep in the end.

    I'm fairly new to the forum, having been diagnosed with Fibro in June this year but I've been around the site for some time as I have several other conditions, including Polymyalgia Rheumatica and Giant Cell Arteritis, which have several similar symptoms similar to those of Fibro, so it gives my GP and rheumy a fine time trying to work out what's going on with me!

    I hope you'll find this forum as friendly and helpful as I do and I wish you all the best!


  • Hi Terry!

    Thank you for your lovely message :) I slept better last night than I have been recently so I actually had a wee bit of energy to do a few things.

    Sorry to hear of you have fibro, did it take a while for the diagnosis? Sorry for my ignorance, what exactly is Polymyalgia Rheumatica and Giant Cell Arteritis? And how does it affect you personally?

    Oh tell me about it! My GP said to me the other day that I was the most complex patient he has had under his care...oops! I have several doctors also, although my rheumy and I don't see eye to eye on a lot of things. It was because of her that it took so long for my CNS Lupus diagnosis. She has a habit of only paying attention to how I look than anything else! I've had Fibro for 9 years now and I genuinely believe that it is an overlooked illness. Like lupus, if you look fine then you're supposed to feel fine!

    I wish you all the best and would love to speak more with you :)

    Suzy x

  • Hi Suzy

    I'm glad you managed to get some sleep the other night. I know what a pain it is when you don't get a decent night's sleep. I find i can handle things a bit better if I have slept well although that's not often these days.

    You asked about Polymyalgia Rheumatica and Giant Cell Arteritis so I though the easiest and quickest answer was to cut and paste!

    Polymyalgia rheumatica (PMR) is a condition that causes pain, stiffness and inflammation in the muscles around the shoulders, neck and hips.

    Polymyalgia rheumatica may also cause other symptoms, including:

    a high temperature (fever)

    extreme tiredness (fatigue)

    loss of appetite

    weight loss


    If you have pain and stiffness that lasts longer than a week, you should see your GP so the cause can be investigated.

    It can be difficult to diagnose polymyalgia rheumatica because it has symptoms similar to many other conditions, such as rheumatoid arthritis. These conditions will need to be ruled out before polymyalgia rheumatica is diagnosed.

    Giant cell arteritis (GCA) is a systemic immune-mediated vasculitis affecting medium-sized and large-sized arteries, particularly the aorta and its extracranial branches.[1]

    The aetiology is unknown, but the pathogenesis involves a chronic inflammatory process, predominantly of large arteries.

    The clinical connections between polymyalgia rheumatica (PMR) and GCA have suggested that they are different manifestations of the same disease process.

    GCA typically presents with recent onset of temporal headache, myalgia, malaise or fever. Typical features may be absent or subtle. GCA should be suspected in anyone over the age of 50 with headache, scalp tenderness, transient visual symptoms or unexplained facial pain.

    Acute blindness occurs in up to 20% of patients. Delay in diagnosis and treatment may explain the high incidence of irreversible loss of vision. Jaw or tongue claudication occurs in a minority of cases but indicates a high risk of ischaemic complications.

    Symptoms moderately predictive of a positive biopsy result include:

    Jaw claudication (pain comes on gradually during chewing, whereas temporomandibular pain or dental pain is immediate).


    Any abnormality on palpation of the temporal artery (absent pulse, beaded, tender or enlarged).

    Other useful predictive features include:

    Temporal headache.

    Scalp tenderness.

    ESR significantly elevated.


    There are lots of other symptoms, most of which I suffer from, but i won't bore you with the entire list.

    I'd been suffering from various unexplained symptoms for some time and my GP had sent me for various tests, scans, etc. but had been unable to identify the problem. They started around 18 months after I'd had open heart surgery (a quadruple bypass) following a heart attack in January 2007. It was finally diagnosed in March 2012 following an incident at home. I was sitting at my desk and had bent over to retrieve my pen from the floor. Suddenly I lost vision in my right eye. It returned after around ten minutes but it scared me a great deal. When I visited my GP as a matter of urgency he told me I had PMR and GCA, he'd just had blood tests results back showing raised inflammatory markers and the loss of vision confirmed the GCA, or temporal arteritis. I was immediately prescribed 40mg of prednisolene (corticosteroids) and referred to rheumatology at a local hospital. When I saw the rheumatologist she said the dose wasn't high enough and raised it to 60mg. I was very loath to take the steroids but I was faced with the very strong possibility of permanent blindness if I didn't.

    I've spent the last two and a half years in a black hole trying to reduce and get off the steroids but every time I think I'm succeeding the PMR comes back to hit me right between the eyes. My visit to the rheumy last week informed me that the inflammatory markers were back up and I was told to increase the pred from the 5mg I was down to, back up to 15mg per day.

    Although the steroids have saved my sight (touch wood) it is a horrible drug, with many life-affecting side effects. One is that they can induce diabetes and, sure enough, last November I was told that I had type 2 diabetes.

    Over the last six months or so the pain I was suffering has become more generalised, basically throughout my body, and my chronic fatigue was ever more increasing. In June the rheumy diagnosed fibromyalgia to go along with everything else I suffer from. Following last week's visit, a different rheumy is now investigating whether i have rheumatoid arthiritis.

    Fifteen months after my heart attack I was made redundant and I've not worked since, to be honest I'm not able to hold down a job now. Four years ago I was a volunteer ranger for the Mendip Hills AONB, walking the hills and valleys, but now I can't even walk to the shop on bad days. As I tell my friends, if i was a building I'd have been condemned long ago!

    Winter is coming and that's when the black dog visits my life. People look at me and tell me how well I look. I wonder sometimes if I'm imagining all the pain. I'm so glad we have these forums to share our thoughts because at least people here know what we are going through.

    Sorry I've gone on a bit, hope i didn't bore you. Hope you have a great day!


  • Hi Suzi, welcome, to all of or lives. I feel for you. I have to take Morphine 3 times a day to control my pain. Are you in London?

    Karen x

  • Hi Karen :) It's lovely to meet you and thank you for your kind words!

    I live in Edinburgh, although I come to London twice a year to see one of my consultants at St Thomas' Hospital. How does Fibro affect you? I find that there are usually many similarities between us with Fibro but also a lot of differences in how it affects our bodies and what we find to be the worst symptom. Sorry to hear that you are in a lot of pain and that you have to take Morphine so often. I hope this is helping though? I am back taking Dihydrocodeine until my symptoms settle again!

    Suzy x

  • Hi Suzy, Bit late in saying welcome. You have joined a good place to leave your troubles and have some fun.

    check out the chatroom and pic of the day :)

  • Hello 'tiredalot40'! The name says it all really about Fibro!

    Thank you for your lovely welcome, and you're by no means late! It has taken me all day to reply to everyone and I am overwhelmed by everyone's kindness :)

    I still need to find the chatroom but I have discovered the pic of the day which made me chuckle! Can I ask, how do you put up a profile pic? I still haven't figured that out and I think it's always nice to put a name to a face :)

    Hoping you are well, Suzy x

  • Hi Bellaflowe,

    There are a lot of us who actually enjoy the anonymity it lets us say things you may not necessarily say :) I am useless at the computer things so can't advise, sorry. From memory you can do it in your profile and it gives you the option of uploading a picture, select your picture from your gallery. Someone will probably be along soon and correct me :)

    The people in here are lovely, I get a good giggle at some of the posts whilst others are inspirational. Yesterday in the chatroom we were being very silly and making up words, it was fun. You will fund the chatroom in the posts section, usually in the morning :)

    I hope you are as well as can be today :)

  • Hi again tiredalot!

    Yes I suppose the anonymity is comforting and there won't be any judging from other people that way. Well, hopefully not!

    I hope you're well today :) x

  • morning Bellaflowe :)

    I haven't seen a judgemental post to date :) Personally I have found the people on here very friendly and willing to help where they can, it's great :)

    I am not doing too badly. thank you. Hope you are as well as can be :)

  • Good afternoon tiredalot :)

    That's really good. I've only been part of the group for a week and everyone is just so lovely.

    I'm fine today, although quite nauseous and weak as I took my new meds yesterday. Fingers crossed it eases! Hope you're having a good day and feel as well as you can :) x

  • Oh, that's not so good. Hopefully it will settle down in a day or so :)

    Good luck with the new meds :)

  • Hi Suzy,

    Welcome to a wonderful friendly & helpful site. So sorry to hear of your pain & suffering, I have suffered Fibromyalgia since about 1994 diagnosed in 2000 I weaned myself off all prescribed medication as I feel they are just toxins going into my system & god only knows what problems they could create, I know that one medication I took for eight years highest doze allowed stopped about eight or nine years now thankfully was Diclofenac trade name Volterol it is now known to cause strokes & heart attacks! When I'm at my worst I just rest on the sofa, I always make a point of getting out of bed & get dressed I am on my own so when down stairs I can see & sometime hear the neighbours out & about maybe you think this daft! but I kind of feel a little involved in daily life if I stayed in my bed I think that would depress me & just make me feel worse & wallow in self pity! For pain I only take paracetamol not all the time just when pain is unbeatable I also go to the swimming pool as the water takes the weight off the painful muscles & joints I do three aqua fit classes (at my own pace) I feel the benefit of the bit of exercise as like everyone else on here I don't sleep much & quality of any sleep is poor, but after aqua fit & a swim or even just walking up & down the pool when I get home I am only able to sleep! I get about one & a half to two hours quality sleep which makes me feel a lot better & can enjoy a bit of the day with a little less pain. Sorry for the long message but hope you find it useful. Take care, gentle hugs being sent to comfort you xx

  • Hi honor,

    Sorry for the late reply! Thank you for your kindness :)

    I'm amazed that you have weaned yourself off of all medication. I wish I could do that but unfortunately I also have lupus and the medication I take has its unpleasant side effects but I need to this medication to live!

    I am just back from a short break to the north of Scotland (I live in Edinburgh) and the lodge had a hot tub, it was wonderful for my joints!

    I used to only take Paracetamol when I couldn't take the pain any longer and needed some relief. This year, however, the pain has gotten alot worse and I need to take stronger painkillers which I hate having to do, but the pain is too severe without them.

    It's funny, I also make sure I get washed and dressed every day, no matter what! I like to at least sit on my sofa instead of just lying in bed all day.

    Hope you're having a good day with little pain. Sending hugs to you also xxxx

  • Hi Suzy,

    Nice to see you had a wee holiday & the use of a hot tub & you got some comfort from that, when I go to my gym for aqua & swim I use the steam room & jacuzzi as I get great relief from that too, I also have other conditions linked with Fibro, I have under active thyroid, pernicious anaemia ( B12 injections) every 8 weeks which helps my Fibro pain to a small degree, I was suffering a constant tickly cough, fatigue & feeling the cold, not usual for me, after diagnosis of pernicious anaemia & got my first injection I felt my body coming alive after a few hours, I never realised before that injection, I was suffering headaches which I put down to lack of sleep, & my cough so irritating I always had a bottle of water at hand, to sip to try stop cough & try to keep hydrated to minimis headaches too, after the injection my headaches stopped & I was literally drooling at the mouth lol I was not producing saliva system dehydrated reason for headaches & tickly cough & other symptoms too! The muscles obviously more painful because of the dehydration! I live in Glasgow, so you will know like Edinburgh it can be very cold, which does not help our conditions, but hey ho nothing else for it but to get on with it. Hugs xxx

  • Hi honor,

    What a good idea, I've been thinking of going swimming lately but my energy is so low at the moment that I don't have the get up and go anymore! Well at least not just now! My Aunt has vitamin B12 injections and she feels a whole lot better after them but then struggles in the next couple of weeks before she has her next injection. The weather is definitely getting colder now - winter is on its way! My joints get much worse at this time of year but I love the cosy nights and Christmas! Favourite time of year :) I'm thinking of putting my Christmas tree up next month hehe! Oh definitely, nothing else for it eh? X

  • hello suzy,

    I too have lupus and fibro (and few other conditions), they both share similar symptom's so its hard to know which one is to blame for latest problem isn't it? ive had lupus since 2005 and fibro since feb this year. I love this wonderful site, everyone is so kind and helpful. people here have taught me a lot about fibro as I hadn't a clue when I was told I have it.

    I struggle with constant daily fatigue and pain too. we all understand how lonely it can be living with these conditions, but youre not alone as we are all here for you.

    hugs x

  • Life's a bitch with Fibro (and Rheumatoid Arthritis). Got shocking news yesterday. 3 months after booking and paying for a cruise in November with P&O, emails arrived to say that all bar one port was likely to prevent me disembarking to go on excursions. Methinks a letter requesting refund will soon be winging its way.

    I know what flares are like and I hope this one is short-;ived. When I have an RA flare, usually a Depo (steroid) injection in the but relieves the symptoms for a while. Wonder if it works for Fibro & Lupus? Take care and keep chatting.


  • Having a flare is always difficult. I am sorry that you are having such a horrific time. If you don't mind though I would like to share some of my story.

    I was diagnosed over 20 years ago but just this year I have reversed my fibro.The only pain meds I ever took were Naproxin and now I am off of it. I refused to take any typical fibro meds after doing some online research about them. Not only were they not guaranteed to work but you were playing Russian roulette with the possible side-effects. Many of the side effects were worse than the fibro. Since I already knew that food was medicine, I started there. I also added some carefully researched supplements. My RLS went away within a few days and the flu like pain followed soon after. I felt like I had my life back but wanted more. I did a couple of targeted cleanses and saw even more improvement. I also addressed a specific condition that I knew was in overdrive but did not see any real improvement in my fibro there. I only have a bit of stiffness after sitting for a while and some morning joint pain. I am still working on both. In less than 8 months though, I turned my life from chronic illness to health. Just message me if you want more details as I am happy to share what I did.

  • hi .

    am new to group too and also suffer with fibro.wat is lupus if u dont mind me askin

  • Hello everyone! I've just checked in to see if I have any replies and I can't believe so many of you have responded! Thank You!! I am truly overwhelmed. I have tried a few different sites to meet new people and I never had any replies so I am honestly so happy! :)

    I will reply to you all individually! And thank you all again :) So glad to be part of this group now :)

    Suzy x

  • Hi Suzy, so nice to meet you. I live on the west coast of the US, so I'll be on a lot when you should be asleep :) . . . not to mention, like Ken said, the forum has its share of insomniacs.

    I have to stop drinking leaded coffee after about 3pm. I used to hate decaf but there are many good kinds out there now. You might have to buy beans to grind to get a decent flavor, but if you don't have a store that carries premium products near you, I'm sure you could go online.

    I like heat for my aches and pains: hot water bottles, heating pads, herbal wraps, hot baths, warm clothes (like Elaine said), jacuzzi/hot tub whirlpool, etc. Numbness, aching joints, tight muscles, etc., all respond well to heat and for me, it just feels so good!

    Being tired makes everything so much worse. I hope you get some sleep and are feeling better soon. You will find many folk to chat with here or just to share laughs and rants. See you soon.

  • Hi Clare,

    It is 05.10am here in Scotland, no sleep yet for me! With you being in the U.S. your weather must be warmer than what we get here! I see you mention hot tubs etc yes they are a great relief for Fibro sufferers, you also mentioned hot water bottles!!! so is your weather not that warm where you sre in the U.S ? take care sending gentle hugs to comfort you xx

  • It is warmer indeed. I am in Southern California, and the dessert gives us cold nights. But if my pain is too much, I will use the jacuzzi at night when it is cooler even on hot days. I was lucky to get a decent enough settlement from a workman's comp case in 2004. The first day it arrived, I went in 4 times!

    But heat doesn't always do any more than ease the pain some and I have to take pain meds. Yesterday I felt like my whole body was vibrating with aches, even though only a few spots very severe. I didn't use the hot tub though. Sometimes it is a bother.

    I hope you are having a better day today. Lovely to chat with you. Clare

  • hi suzy welcome to the forum i have fibro,chronic pain syndrome,osteoarthritis,chronic fatigue,cervical sponylosis and more.hope you find this site really useful.lilian

  • Suzy, I know this is a late comment, but I wish you would do something in a few weeks or so. If not, I will try to remember. I just reread through a lot of this - many posts were too long for my concentration at the time - fibro fog can be so inconvenient. :P

    You mentioned doing Yoga. I used to regularly 3x/week, then I took up roller blading and quit. Then after about 2 years, I had quit both. That was in 2010. I have been thinking about doing yoga again, got out the mat and my favorite cd which has a great sunrise ceremony routine. But . . . I haven't started yet. It would help if I don't to get a littl shove. I might be too embarrassed not to begin! I will put it on my calendar to double check myself, but would peer pressure help?

    Maybe a private message? Probably not fair of me to ask a favor of someone so new to the site, but I'll rationalize it and say I'm just doing it to get you involved. :)

  • Hi Clare,

    I hope you have started your Yoga! it would help your physical suffering to do the gentle relaxation exercises, it would also give you mental rejuvenation! you have your CD & MAT out & at hand now so, do those yoga exercises!!!! I hope this helped with the nudge yoy needed lol take care clare hugs xx

  • Hi Clare! I've sent you a PM so we can get motivated! Hope you're feeling as well as you can today. Hugs x

  • Welcome to the site, I have not been here for quite some time myself but I am sure you will get all the answers....well most of the answers that you need and lots of support to as this is a wonderful site to be on, plus there are other communities here for any other illnesses you have xx

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