How painful is pain?

I find it so annoying when some people with fibro in the local support group say they are always in a lot of pain and that heavy meds don't help with it and say perhaps I am doing too much if I manage to go rambling between flare ups - but then off they go on holidays to Greece or similar. I wonder how they do it if their pain is so bad. I find myself questioning what we each mean by the word 'pain'. I am lucky, most of the time I do not have severe symptoms so when I get them I refuse to take meds other than over-the counter ones because I am unhappy about the long term side effects of heavier meds - but when my myofacial pain flares up I couldn't contemplate even going to the supermarket, feel nauseus with pain - the thought of getting through the airport, waiting in queues for passport control and sitting in the combined space of a plane would stress me out, I would find it too exhausting. Maybe I am stirring up a hornet's nest by asking, but I wonder whether we have more control over the way we perceive pain than we think we do?

I should add - I am not suggesting that people do not experience pain as I am sure we all do, but I am wondering how far the psychological components of pain outbalance the physical ones, whether the cause is physical but out ability to deal with it is largely emotional?

I'd be interested to know what people think - but please don't leap to my attack, thanks. x

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  • I'm sure no one will attack you for a perfectly valid question, I can only speak for myself, I am in a great deal of pain which is constant and on occasion goes up a gear to the realms of unbearable however in my case if my mood is low, it is rarely low, everything is certainly magnified. Maybe for others it depends very much on the support network they have, some have none at all, if you feel you have no support it would be easy to slip into negative thoughts, so I would say everyone has their own set of circumstances that can have some bearing on how they feel. As for going on holiday I would, given the opportunity, put up with airports etc. Lou xx

  • Thanks lou. I was being a bit tongue in cheek when asking people not to attack me - but I know sometimes I ask questions other people don't like to ask... anyway thanks, your reply is interesting. I know the people who manage to go on holiday despite pain do have support networks around them whereas I don't so perhaps when I am in pain during flare ups I feel more threatened because I feel alone in having to deal with it. Probably if I had someone caring for me then I would manage to go on holiday despite the pain. Sue xx

  • I know what you mean, I find those people difficult to understand too. I suppose we all cope the best way we can

  • What a lovely baby! ( in your user photo) - is it yours?

  • No not mine. I took it from an avatar online. Its supposed to be baby Jesus. I just loved it so I kept

  • Well if it was baby Jesus they must have had man made blankets a long time ago - but it is a beautiful baby and as such carries the idea of baby Jesus beautifully.

  • Hi there

    I think you are absolutely right, everyone's perception and threshold of pain (as with many other things) is totally different.

    I think it is also easy to fall into the "moaning" trap when you have a chronic illness and be all consumed by the symptoms. I volunteer in a centre for people with disabilities once a week and there is an enormous difference in the attitude and demeanour of the people I see there. Some have a real chip on their shoulders and see barriers everywhere and others just never give up and if you could not see them you would never know they had disabilities.

    I also agree with you that I just can't cope with even the thought of travelling, especially abroad, as I never know when my symptoms are going to strike me down and like you, I get unbelievably stressed at the mere thought of travelling (I live on my own so it is not an option really anyway). But everyone is different aren't they and perhaps the pain is well controlled and they can get away with going to Greece

    Like you, I am also lucky as my symptoms are not as severe as some but I do take prescription meds when I get pain as over the counter stuff does not work for me (and even these only take the edge off and I am limited in the pain relief I can take due to being on other meds). I do like to think that I have quite a high threshold of pain (anyone who has gone through labour and child birth will know what I mean). I also try to live as normal a life as possible and look after my appearance. Good on you for getting out and rambling when you can - I would do it if it was my thing.

    The problem with FM as we all know is that we can look absolutely fine most of the

    time so it is difficult to get others to understand the symptoms that we suffer but for the moment, while I can I refuse to let those symptoms get the better of me.

    I love this site because it is a great forum for having a moan if we want to, giving information and advice - but most of all because there is a core of really upbeat people who make me laugh on a daily basis even though I know that they are in a lot of pain and discomfort and much worse off than me.

    So, I hope that no one has a moan at me either as I am not having a go at anyone - it is a bit like beauty being in the eye of the beholder ......

    Not sure if this answers your question though :-)

    kind regards.

    Jane

  • Hi Jane

    Yes we do all cope so differently. Ironically I moan about emotional aspects of my life - being lonely, not having anyone to go around with locally but finding it very hard to make friends (despite being extremely friendly and open!) and having a disabled husband (end stage 5 renal failure, inoperable aneurism and he's very hard of hearing) - but can cope with physical pain so long as I know the reasons for it. If I don't understand what's heppening to me then I have a tendency to feel traumatised literally, so getting a diagnosis has made it much easier for me to cope.

    I'm about to go to a local women's support centre where they offer all sorts of supports and counselling, etc so hopefully over time I will find a way to bring about positive changes in my life - in the past I have focussed upon the emotional side of things and had extensive psychotherapy, and trained as a psychoanalytic therapist myself - no protection against struggling in life!

    Yes, you are right, we look fine - and ironically I do feel good at times - but during the last 9 months I have had long spells during the winter when I have had myofascial pain as well as referred pain in my shoulders from arthritis in C3/4 and C5/6/7 on my spine and those have really interfered with my sleep. I have also had 6 bouts of flu during which I felt very unwell, and 3 of them developed into chest infections when I felt really ill but symptoms didn't show me to be as ill as I felt, which was really very ill... I've been wondering about ME and tomorrow am going for a private blood test to try to tease out why my resistance to viral infections is so low - 9 months ago I had felt really great for a year as a result of focussing upon weight loss, joining ramblers and making friends in the local fibro support group. Gradually all of those things collapsed due to my repeatedly feeling so ill (raised temperature, glands/throat really sore, ears hurting, coughing up seemingly endless dark muck, ugh - and all despite a really good diet containing loads of fruit, and sleeping like a top for 8-10 hours a night...

    Probably you can hear how stressed I am feeling in response to not understanding why I keep succumbing so badly to viruses, I haven't managed to go out with Ramblers for 10 weeks now and will have to slowly build up my fitness all over again...

    Enough, time to cook dinner.

    Thanks for your support,

    Suex

  • Hi Sue

    My goodness you have been having a bad time.

    Do you work? My reason for asking is that I found that when I was working I caught every bug going and had one virus after another and all the fibro pains were amplified - it took me so long to get over even a simple cold.

    I was made redundant 18 months ago and have not gone back to work and my general health has improved a lot. I believe that FM lowers our resistance particularly if we have stressful lives and by that I mean family members who are chronically sick, demanding jobs and so on, it all adds up - there is only so much that your body can take.

    One thing I did try when I was suffering with constant colds and flu like symptoms including the nasty gunk you mention, is local honey with lemon and a few drops of bee propolis (which tastes vile but is a natural antiviral). I still take a spoonful of honey a day and try to get it from local beekeepers but if they don't have any beekeeper will do!!!

    You sound a really nice lady and I am sure you will find others who think the same way that you do - I am a bit of a recluse myself at times even though like you I see myself as friendly and positive. Often it just takes a little time to sort your head out.

    I would be very interested to hear about your blood tests - there does seem to be a very fine line between FM and ME symptoms and subsequent diagnosis.

    I wish you all the best - happy to chat with you any time

    Jane

  • Hi Jane

    No I don't work - a long story, basically I trained as a psychoanalytic therapist within the NHS unpaid of course for 10 years, then found once I was qualified the funding cuts meant there were no jobs as short term CBT is now what is offered... As you can imagine, I was really angry and distressed, training cost me £30,000 and took 4 years... That was all some time ago. Now I am 65 and trying to find a way to live my life...

    I used honey and lemon sweets all the time as they were the only thing that soothed my irritated throat - next time I will have to try the real thing!

    I'm not really a recluse, in fact I am highly sociable - but I didn't learn how to make friends when I was a child at the time of life when those skills are learned. I have a small number of close friends but they live 30 miles away from where I am, I moved here when I remarried a man I met through the Guardian Soulmates column :) He's now disabled and doesn't get out much - and is very hard of hearing, spends a lot of his time watching tv with headphones on - so I am a bit like a widow, only not one...

    Yes, I am wondering whether the blood tests will show anything - but even if they don't it will be interesting to see my own detailed results, all I get from the GP is don't worry, they are normal.

    Nice to chat Jane,

    Suexx

  • You must have tremendous strength to keep going as you do. It's different for me in that I look ill. But people look at my oxygen tube and alopecia, whereas from my point of view, out of all my health problems it is the invisible illness, FMS, that affects me the most. I'm not housebound because of the Oxygen thing, there are portable options available to me. I suppose other things combine with FMS to impact on my mobility enough to stop me from going anywhere.

    There are plans afoot between my GP & Social services to try to make things easier but more importantly safer to rejoin the community and I think just the thought of it has given me a terrific lift over the past few weeks. Onwards and upwards! :) Tulip xx

  • I agree, it is often a combination of factors, of which fibro is just one, which make life hard. It must be really difficult for you looking ill - first impressions are often what people go by and I admire your courage.

    It is interesting that you comment about safety - I think that is an issue whenever people feel vulnerable. I hope it all goes well for you with the combined support.

    Suexx

  • Thank you Sue. Take care. :) Tulip xx

  • We can only feel our own pain and relate to others based on how we feel. There is no black or white. I have a constant flow of strong aching and shooting and stinging pain. Then every now and then it flares and goes up a gear, it reminds me, all bets are off until I return to the status quo. In the meantime, there are migraines, sciatica and problems with severe fluid retention & rheumatoid arthritis, gout. If someone says their pain is severe then I empathise based on my own experience. I dont know any other way to respond. Tulip xx :) p.s. I've been doing quite well for a while but keep

    it to yourself :) :)

  • I am sorry you get such a lot of pain, that must be hard to cope with. I agree we can only empathise based on our own experience but I suppose I am trying to understand how we differ so much in the way we feel about our pain, the ways in which we allow it or do not allow it to limit our lives. I think for me it is all about the emotional side - if I feel cared about and supported then I feel I can cope with anything so that will lower by stress level, whereas for some people feeling physically in pain is the stressful thing for them more than emotional pain. It's interesting the way we each respond to different aspects of life.

  • I feel loved and cared for. I have 2 life long friends, an amazing bond with my 2 daughters + the joy of 2 grandsons. I'm sure they make all the difference most of the time. But at times, i'm off down the tunnel of the emotional pain and I dont always now why. It is a very lonely place but it always goes hand in hand with the flare. What comes 1st? tough one to call. I'm not sure. I am sure that my history of mental health problems have caused all the others. I wish you well. Tulip xx

  • Hi, I do understand where your coming from. From my own experience when im only holiday I feel so much more better, nice and relaxed... My holidays are what keep me going and so worth the traveling, but as said previous I have support on holiday and no my limits.oh and I take my chemist cupboard with me so always prepared :-)

  • I think you are lucky in that as you say you don't get severe enough pain to have to take anything other than over the counter painkillers, some have to to carry on any sembelance of a 'normal ' life, I've just been on hols to Devon and without my painkillers I would' t have been able to get out and about in fact I probably wouldn't have gone in the first place, I was actually in bed in he hotel one day with a severe migraine which is another thing that would stop me living my life if I gave into it and not go away anywhere, so if they help me to carry on and not be housebound I shall continue to take them. I am also very lucky in having a wonderful OH who puts up with all my problems so I count my blessings , and like KBee says take my chemist cupboard along with me 😀

  • I don't leave the house without my chemist bag and gel:-) x x

  • We'd be in trouble if there was a raid 😂

  • That made me giggle!! X

  • I am in constant pain, on a cocktail of painkillers yet I still go out or do things because if i didn't I would go mad. I also have a good support network around me and other family members who suffer from Fibro as well. Some days I do moan more than others because I reach the point where I feel like I cant do things. I also know if i stop trying to be active I will not start again and will be a worse place. But I also know that we all cope with pain in our own ways, and it is the thought of queuing up and standing around in a airport, and the heat!, that stops me going abroad, but if others are able to good for them and I hope they have a great time. x At the time I write this it is too hot here!!!!

  • Hi, you are quite entitled to ask this question. Everyone has varying degrees of pain. Everyone is different. Some people can endure pain more than others. I played my pain down for years. I kept saying to others that my pain wasn't as bad as theirs. Some are quite verbal about their pain and others aren't. I have now learnt to own my own pain. My pain is my pain, like your pain is your pain. There are people who have a high pain threshold, while others have a low pain threshold. And like others have said, it also depends on ones personal circumstances and symptoms ie, Stress, pain, depression, family problems, money problems; medication and their side affects etc... At the end of the day, each of us are unique and we all could do with a little TLC x

  • Thanks for all your varied thoughts, it is interesting. Maybe I am asking at the moment because I have come off Duloxetine and am feeling good at the moment, pleased that the pain hasn't returned. I have had times when I have just sat and rocked at my computer because of the pain but tend even then to do without meds because I would be more frightened of their effects long term than about the pain. I guess you could sum it up by saying that based upon my past experiences, my fear of harm being done to me by mankind is greater than harm being done to me by my own body. x

  • Yes very interesting, Does not taking medication stop you doing things that you want to do because of the pain? If not then maybe you don't need to take anything, personally I would rather live as near a life as I did before I was ill which the medication helps with than stop doing things I want to do and being much worse than I am now and probably housebound and unable to walk, I look after myself in every way I possible can, walk as much as I possibles can, I. watch my weight being overweight is one of the most harmful things to your. body, In fact I could do with a few extra pounds, I don't smoke or drink alcohol ( I still have fun). Lol. or eat junk food which would probably do as much harm if not more than any medication. To each his own, good luck

  • I think that everyone deals with pain differently, any degree of pain to some person is ache,pain or agony but still spells pain I don't know how other people cope, but myself have been in chronic pain for 12 years due to RA And untill that was controlled just this last 6 .onths iI can only describe it has walking round with the pain of broken bones. Fibro was diagnosed on top 8 years ago.I am stuborn and never gave up i held down my busy job has a retail manager up to march of this year. Believe it or not it was the fibro fog and chronic fatigue that finaly finished me. I can now hardly walk due to my leg pain and the weakness. But to answer your question I held down my job with chronic pain and it was hell but my determination was greater to carry on with my 40 year career cause it gave me a purpose to do so

    My motto was that my illnesses hadn't won has long been inhas I got into work. Didn't matter when I had to come home early I got there and I beat it. So what I think I'm trying g to say is it could be mind over matter or a purpose to go on. But this does not lesson mypain or my ddisability's, I'm justgood at hiding and have learnt that since the age of 5

    The only people that see my pain and share it is people I love wbo. Iddon't have to hide or cover up, I am then stripped named with pain because I let the. In. I can't comment for people in this community that I don't know. But maybe they can only talk on this site about there pain because in real life no one believes them a d they feel safe to express on here hoping for some mabe sympathy cauze they ca t show there pain at home. The above is how I feel and deal but not necessary hoe others exltess or ca t express. Hugs to u has it can come across frustrating and different, but does t make u wrong neccsery with your opinions xx

  • It is a very interesting thread that you have created and like everyone else I can only speak for my own pain and my own coping mechanisms.

  • Interest debate shr, i think everyone has already said that pain is very much an individual experience. Personally, i dont like to give in, but definately pace myself and listen to what my body is telling me and act accordingly. I find that letting the pain rule aNd staying in bed makes it worse in the long run as i stiffen up more, pain increases and then i feel sorry for myself. But, then there are days so painful and exhausting that to get up and do anything is dangerous, as i burn myself, drop everything, cut myself, fall over and into things and forget to turn things off. I do think that going abroad and relaxing in the warm weather would definately help me feel better, but as you say I also could not do the travelling and airport stuff to get there in first place. I have severe pain if I have to stand for any ,legnth of time from athritis, same with walking. Also cannot sit for very long as have severe cocydenia, and migraines that come at any time. The mere thought of an airport makes me go hot and cold, but I would love to go abroad again. I wish I had a tardis !!

  • Me too! I would love to be on a warm beach, gently bobbing up and down in a warm sea...

  • This is such an interesting subject - how does an individual describe/ cope with pain. I am lucky for the moment I am still able to deal with Fibro pain, but I wonder who else can deal with my pain, can I deal with your pain? If I hurt who else can tell me you r not hurting enough - we all deal with what we know. As pain as best we all can 😄

  • Thank you all for responding... I suppose I am trying to think about my life right now, what matters to me, how I cope with my health and non-health, what holds me back and what is an excuse... all those kinds of questions. I feel I am at another crossroad in life, one where I can choose to be an old lady living a very narrow life, or one who makes the most of things... I find it takes a lot of effort to overcome familiar ways of holding myself back, some of the time I can find the effort but during a flare I slide back again. I guess I am thinking about it all now because I am coming to the end of a very frustrating and boring 10 days during which I had a virally triggered chest infection and felt really ill - but the positive is that it has left me feeling I don't want that kind of half alive life - and since I am already a pensioner that means I need to get on with living more fully but at the same time have to take account of having pain sometimes. Having just come off Duloxetine I am uncertain what level of pain I will have to cope with, during the summer I tend to have few symptoms but the winter usually brings them back with a bang!

  • I understand where you are coming from as I think the same only from the other way lol... I cant understand how someone can go abroad or take long walks etc while having Fibro ! It must be that we are all so so different. Some have it far more severe than others or some have it more under control with meds. Some have different type of Fibro ie one that flares up then gives them a break for a while.

    At the bottom of it I suppose is that it really does not matter ! Every person is so different and would be boring if we were the same. I am actually pleased for the ones who gets breaks so that they can go for the 'ramble' or 'holiday abroad' ....

    Just enjoy your time between bouts of pain hun and dont worry about other people :) xxxxx

  • That sounds good Tishie. xx

  • I know what you are saying I couldn't even be able to do a 1-2hrs drive to the seaside let alone a holiday abroad even the thought of it makes me hurt I am constantly up and down as I seize up if sit for long periods of time if I watch a program I have to run to the loo in the ads or just take my cup away as I get sciatica if I sit the whole way through the program and I have never been able to do that so I could never do a holiday abroad and I walk with a stick not very far at all yes I'm in pain even with heavy meds but not severe pain I do get flare up's and yes I can Easley y in bed all day but I don't I also have asthma and 3 degenerating discs in my lower back I have suffered from depression from an early age and anxiety attack's panic attacks but hey IM alive some are not so lucky fighting every day just to stay alive with cancer organ transplants and rare heart conditions that limit's your life dramatically if born with it rarely live to the age of 10 or younger when I sit and think about these poor people and their families it makes me look well mardy if you would lol I know I'm not but it does sit and make you think about it gentle hugs all hope you don't take this the wrong way xx xx

  • Horses for courses, isn't it, what is one mans pain, compared to another, we all have situations that would stress us or push us past the limits we can withstand, I have days where the pains seems unbearable, yet I know for a fact, that the heat of the sunshine, from a warmer climate than Scotland, is good for me, so I could,would and have taken meds to get me through the ordeal of airport and plane journey. so I guess its all comparative. x

  • I agree that we all differ in our perception of pain. But I also believe we have different types of fibro. That said it doesn't make one pain or person better or worse than anothers (though I was once told that it was only fibro, there are things a lot worse so just to get on with it - this was from another fibro sufferer).

    I was fortunate to have some CBT which I found very helpful, though doesn't work for everyone. It looked at my past to challenge my perception of pain and myself. And it looked at grieving for the old me to allow the new me to flourish.

    I take a myriad of medication which allowed me to work longer than I might have managed without it. Though eventually had to take early retirement when my hands made it too painful to continue.

    I also have holidays but they take some planning, allowing for how long i can travel before the pain becomes too much and allow for sleep. I am fortunate that my partner is understanding which helps an awful lot. I might add although the meds bring my body pains to manageable I can have a mouth abcesse and be totally unaware until my face swells. I also had some stitches in my gum without anaesthetic and it hardly bothered me. So I don't think we as a group do not necessarily have low pain thresholds.

    Anyway that's just my rambling ;)

  • Hi there from my experience of cfs/fibro and depression etc I find that my one holiday a year keeps me sane and gives me something to look forward to and also know that its important for my hubby who supports me and works so very hard. As prev mentioned I take a sack load of meds with me, and I take a sleeper on the plane to knock me out but interestingly I always feel so much better when I am away. I try to swim, this helps the pain, it's a beach holiday so I just unwind, try to forget all the stresses at home, take my meds and bond with hubby. I am still in pain but my ability to cope seems so much better. Is this psychological? I don';t know but if it works I'm not knocking it!

    Hugs

    jo x

  • To put it briefly "Developing empathy: Walk a mile in someone's shoes....."

  • From what I understand, everyone experiences pain differently. I have pain, but it doesn't incapacitate me in the main (apart from migraines). That said, if somebody bumps me or grips my arm, the pain of that is greater and can persist for several hours. My main problem is stiffness and muscle weakness, although the Neuro dismissed it as insignificant.

    I haven't had painkillers for several months now, mainly due to the fact that it takes a month to get an appointment with my GP and I can never be sure how I will feel on the day, or even if I will be able to get up! I have recently had two letters from my GP asking me to go in for a blood pressure check with a HCA. I can take my own BP, thank you!

  • Yes, I know what you mean about appointments and waiting for them - I find even when I am ill with maybe a chest infection, by the time I see someone my temperature has dropped and they say no infection despite the fact that the next day I have chest pain and am coughing up thick muck - and that's without the interchostal muscle pain that I get anyway. Also I agree about taking care of oneself in that I can take my temperature and tell them what it is but despite my having done 14 years study at Uni level they still seem not to believe me unless they find the same thing... I find medics great for certain things but dreadful for fibro, depression and borderline infections or flu-like symptoms - it isn't just that they don't know but that they don't seem to listen to the patient. The specialists I generally find really good, especially the local Rheumatology department where everyone I have seen has been extremely professional, knowledgeable and caring - really lovely. Lucky me!

  • Interesting thread. I find my pain levels change with the weather - literally. If its warm and sunny (as of now), I'm practically pain-free, but then again I'm more active when the weather is better. So not sure if that's causal. My attitude is different (I'm not saying it's all in the mind but think positivity plays a big part with me) and I feel more cheery and tend to ignore my pain. Mind you, I haven't been formally diagnosed with FMS yet - so I might be talking rubbish. But as someone said, what can bring someone right down may not bother another. My rheumy has suggested inflammatory arthritis for the pain I have in my wrist and elbow - but to be honest, apart from when I'm typing, its not that that really bothers me, its the fatigue and the jelly-like weakness in my legs that does! It's all subjective.

  • I agree - no pain - well not quite nothing but very little pain - all summer then suddenly wham - winter is here and everything hurts. This year I am determined not to let that happen, to be as active as possible and find ways to relieve the pain so I can carry on living! x

  • Thanks again everyone, it's really interesting seeing how everyone feels and thinks about their pain. Suex

  • In my case I think it's the fact that it's chronic pain. Mind you I rarely leave the house now. But i do know my mood affects my pain levels.

  • Yes, I agree absolutely the same for me too. Sorry you rarely leave the house - is that due to fibro or other problems? x

  • I just had to reply as I have just returned from holiday in Cyprus, 6 month previous I could not walk to the supermarket door without tremendous pain and had to go home, now I can manage to slowly walk round a quarter with rests on my walker but I love my holidays I have support from my family, to get there I have all my pain relief and my tens and a wheelchair the heat makes the pain better I relax in the pool with a float as it's too painful to swim and nobody is bothered when I lie down in the afternoon as it's siesta time, but I'm still walking the floor at 4am with pain but not as much as in the UK, but get out every day seeing new things, that is why I go abroad x

  • Hi all l can understand where you are coming from. I go on holiday every year to Turkey around the same time. The area I go to is flat and we stay at a ground floor apartment owned by friends everything is within walking distance. I use an elbow crutch most of the time. I ask for assistance at the airport so no standing around I get pushed in a wheelchair by my partner (he gets really upset seeing me in the chair) or a member of staff. This takes a lot of pressure of us both as we don't have to wait in queues. If I didn't get assistance I don't think we would go on holiday. On holiday I know my limits. We never go on planned trips as I never know how I'm going to feel, if a bad day just laze about the pool and read books. On good days we will go out we have plenty of pit stops the locals are fantastic in restaurants and shops etc the local bus is great and stops at the end of the street. There is plenty of benches to sit on. With wonderful views. We both do the breakfast and eat out the rest of the time. The Sun does make a difference and getting away is a great way for my partner to relax as he is my carer. He makes me smile to see him relax and enjoy himself. The heat does make a difference in the pain I feel. I would recommend assistance to anyone that would like to go away as it's a fantastic service that the airport provides. On arrival back I'm wheeled from the plane to the taxi rank and asked what taxi is most suitable for me. I would definitely pay for this service if there was a charge. Looking forward to September. Xoxoxo

  • Hi Rainbow

    Which area do you go to in Turkey as I'm looking for somewhere flat for my next holiday that isn't spain, it's so difficult to find places as I use wheelchairs everywhere I go as can't walk far x

  • Hi I go to Cali's Beach near Fethiye. You see a few in wheelchairs and wee buggies. Have a look online you won't be disappointed. Lots of hotels and restaurant's along the waterfront etc. Cali's is a great place to see the sunset. A lot of ex pats in the area. Sunday market where we buy all our fruit and veg and Turkish fakes. Any questions I'd be happy to help.

  • Thanks rainbow I will have a look in that area x

  • I won't attack u,I'll just say ,hour very lucky if your not in constant pain like myself ,an if you can have an active life an work ,go out with friends an family,then thank your lucky stars ,and other people with FIBRO ,because there's alot of us Bedbound.

    J xx

  • This has been a very interesting conversation my pain now is pretty high and couldn't give up my meds at all. I have no support system at all except for my daughter popping in occasionally when she is not working. My three boys live too far away. I drove to stay with two of my sons last week and it has nearly killed me the fear of the driving on my own caused me severe panic attacks but i know i can do it but its my brain that just goes into this stupid thought pattern then i was there for a week but as it got nearer to driving home my brain started again. Then it was the thought of being home that upset me being back shut in a flat that i hate on my own i don't go out unless i actually have to for appointments at the drs or hospital. But when i was married with my ex we did go on holiday and the reason we did is was i felt if i didn't do it whilst i physically felt i could manage it then who knew what the next year would be like or the year after that. We went to New York which was crippling for my pain after day one i struggled to walk at all but i made myself do it when i got home i was laid up for a week. But equally my daughter took me to see a show in London a couple of years ago and we stayed over night but the walking rendered me hardly able to walk because it affects the arthritis in my hips and knees by the night time i couldn't lift my legs onto the bed for the pain but again i do it because i don't want to miss out on anything because we don't know if we will be able to walk in a years time. As i am now on my own i don't get many opportunities to go anywhere o if one comes up i will grab it and put up with the pain and deal with the consequences when i get back. If its a sunny holiday then its not too bad as i only go to the pool and sit in the sun and relax and read and enjoy the different surroundings to what i live in. I do try and pace myself and if the pain gets worse then i increase the meds slightly to keep it at bay I am in control of what i do. I think going to my sons last week was a shock as well as i have hardly left my flat for months not going out not doing anything except for my cross stitch trying to keep myself sane. So I guess everyone is different in that they deal with their pain in different ways. Sometimes going to warm climates can actually help the pain although the weather we are having here is not helping me at all this year.

    Hope everyone is having a relatively pain free day

    Jackie

  • Hi I recently visited the pain clinic which opened my eyes to new aproaches of dealing with "PAIN". There are certain times when people with fibro maybe able to manage there pain but 99.9% of the time its a really bad flare!! and no amount of trying to control it will work. Sorting out a good GP and specialist (that will be the day!! would help tremendously, being put on the right combination of Meds, change in lifestyle & diet including work commitments will all help to keep you slightly under the bad flare radiar. I also have found out that STRESS levels do not help and not having support from family and friends who cleary have no understanding or regard for the agonising pain that we as FIBRO buddies go through. I have been hospitalised with it and been to the emergency out of ours surgery I've lost count.!! I'm now doing a lot better. There is NO CURE only GOOD MANAGEMENT! Exercise is KEY little & often (this helps with pain due to the endorphins it lets your body release & this is the bodies own natural pain killer). Swimming I find is the best.   

  • Finally someone like me. Yes I tell myself with every step I take I CAN DO THIS THERE IS NOTHING WRONG.Indeed I can until I start waking like a duck. But I still go out . No pain. Sometimes I look drunk. I don't drink. I see people looking but just ignore them.and I am proud and happy to have accomplished it. Yes we need some positivity to keep as all going. I took my first amitriptyline last night for 1 time at 9 o'clock and slept from 11 last night until 7 this morning. My muscles for the first time relaxed. So a very good start. Xxx

  • I haven't read the comments yet as there are a lot.

    But I agree. I think our psychological state has a lot to do with how the pain effects us. When I am depressed the pain seems to be much more burdening than when I am happy and centered in my life. I find meditation very helpful with keeping my focus on what I haveto be grateful for.

    Pain is so different for different people. And people's willingness to tolerate pain is different.

    For instance I will torture myself if I know it will improve the health of my muscles and mean I will be in less pain in the future. But I have a friend that refuses, she has fibro as well. ( I have told her that yes it's painful but it will improve. Not over night by any means. But it will improve) but she still refuses because she can't stand the pain. But it's her life her choice. And that's ok. It's her that is living her life. She doesn't see the pain the same as I do, maybe she doesn't see the control she actually has in her life. Sorry I feel I'm getting off subject.

    I think pain much like most things in life is a relative subject.

    What is excruciating for one person may be tolerable to another. I do feel we can change a bit of how we experience pain. I use my massages much like when I get a tattoo. I sort of zone out while some what focusing on the pain but not focusing on the pain at the same time. I always think of what will gained from my intentional pain. - more blood flow to starving muscles, lengthening the cramped tight muscle. I learned that I had to love myself enough to take care of myself, so that I can also take care of those I love.

    Anyways. That makes pain easier for me. :)

    Sorry. I think I got a bit off topic again. :)

    Sorry home alone with two children makes me get a bit talkative. I miss adult talk sometimes. :)

    Have a great day!

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