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  • FIRST POST
    • pollyanna 26
    • By pollyanna 26 11th Sep 16, 9:56 PM
    • 1,801Posts
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    pollyanna 26
    OS ways and Poor Health
    • #1
    • 11th Sep 16, 9:56 PM
    OS ways and Poor Health 11th Sep 16 at 9:56 PM
    Earlier today I joined a very good new thread on getting back to old style ways . I managed to take it in another direction by mentioning how ill health can impact on doing everything the old style way . As this was off topic to the original post . I will be posting on the original topic but without going off in another direction
    This seems to happen a lot of the time across the threads as many old stylers do have to cope with this problem .
    Many moons ago PREPARE AT HOME began a lengthy thread on being os with health problems and there have been a couple of other threads over the years .
    I am wondering if the time is right for another thread on the subject with the proviso it is not offering advice on medical subjects as that is for the professionals . We all do many things day to day to minimise fatigue and pain and though they are little things we have developed them to cope and others may not be aware of how helpful the little changes can be .
    I would be interested to see if others would like to join such a thread . I am not very techie as you will gather from my rambling post and have never started a thread before - I hope this posts !
    polly
Page 40
    • candygirl
    • By candygirl 12th Aug 17, 4:26 PM
    • 25,827 Posts
    • 104,623 Thanks
    candygirl
    I have PA too, sorry that you have been left with nerve damage, although I became rather poorly before being diagnosed I was lucky enough to get treatment and for many years had a fairly normal life before getting a Primary Immunodeficiency. We have a lovely Border Collie, I have known a lot of Staffies and they are great dogs
    Originally posted by maddiemay
    Do you have B12 jabs hun?if so how often ?
    "You can't stop the waves, but you can learn to surf"

    (Kabat-Zinn 2004)
    • lessonlearned
    • By lessonlearned 12th Aug 17, 4:41 PM
    • 10,074 Posts
    • 56,617 Thanks
    lessonlearned
    I have been reading this thread for a while now as I have had a lot of symptoms like joint pain and tiredness and I've been diagnosed with fibromyalgia. I've not had much help from my GP so far apart from antidepressants to help me sleep so I have read a few books on the subject. I'm taking lots of supplements like vitamin D, B12, magnesium and calcium and zinc.

    Does anyone else on here have this condition? Any tips?

    I called up about my state pension forecast the other day as I need to make National Insurance Contributions for a few years I missed and the woman on the phone was generally chatting to me and said I could claim PIP (I think that was the name of the benefit?) for fibromyalgia.
    Originally posted by Wednesday2000

    MoneySavingExpert Insert:


    Thanks for your experience lessonlearned. Anyone reading this please ensure you visit your GP first to discuss your symptoms before taking any action.

    Back to the original post..

    ----

    I have fibro and osteoarthritis and also, stomach issues, namely GERD and IBS and also thyroid and adrenal gland problems. I had a duodenal ulcer when I was 17.

    We are not supposed to give medical advice so I won't, I will just outline my history and some of the self help measures which have made a difference to me.

    I do not and cannot take any prescribed meds for fibro so I have done loads of research myself. My GP admitted that because my stomach just will not tolerate the usual meds I was on my own. Because of the previous ulcer I can't risk a stomach bleed. Well I could but it would be pretty stupid........

    I have done a lot of reading and I have come to the conclusion that these conditions are all interrelated. It's very much a vicious circle, with one condition pretty much leading to another.

    I think there are also a great many other linked conditions.......namely anything that is due to inflammation or which triggers the auto immune response. The only way to deal with it all is to somehow break the circle. Easier said than done. It takes time and the average GP just doesn't have that kind of time to devote to a patient.

    I have been forced to look elsewhere in order to manage my symptoms. So I looked to complementary medicines and natural healing and pain relief.

    Whilst all this was going on.....I lost my husband and both my parents within a two and half year time frame, had a serious car crash suffering whiplash, so my stress levels were through the roof. At the same time I discovered.I also was just over the "pre-diabetic" range and on the cusp of full blown Type II diabetes, and my cholesterol levels were creeping up.

    Given that my GP had already admitted that there was little he could do for me It was time to take action. So I started experimenting.

    I initially just cut out wheat and all convenience foods. Immediately my stomach improved and I was able to drop all my stomach medications. The IBS and the GERD cleared up, and apart from the odd flare up when I eat the wrong foods or if I am undergoing a lot of stress I have been symptom free for a couple of years now.

    Although my stomach was much better I was still experiencing joint and muscle pain and I also knew my adrenal glands were shot and that my thyroid wasn't functioning properly. My reading had led me to the conclusion that in addition to all the stress I was under my diet probably wasnt helping so I saw a nutritionist about 18 months ago.

    She advocated a complete ban on all grains (including rice and oatmeal), most nightshade plants .....so potatoes, tomatoes, aubergines, etc. And no dairy or caffeine.

    Well I did what I could although I refused to give up coffee....(life just wouldn't be worth living) and I do think we do need some dairy if we are to get enough calcium to protect our bones as we age so I cut down on dairy rather than eliminating it completely.

    I adopted what is usually referred to as the Paleo diet, namely meat, poultry, game, fish, eggs, vegetables, salads, nuts, seeds and just a little fruit....I still had to tackle the blood sugar levels so kept fruit to just one portion a day.

    She also advocated a regime of supplements such as the Ones you mention because my body had been depleted of essential vitamins and nutrients. Magnesium, Vit C, Vit D, Vit B complex. She also advocated a good probiotic to ensure good gut health because obviously that is my weak spot. I also added omega 3 capsules for good measure. I have also just started taking glucosamine.

    Well the results were astonishing. My digestive system is great, my adrenal glands are working again and my thyroid function is improving. I am no longer diabetic, my cholesterol is down to normal, no headaches and both the fibro and arthritis pain are much improved.

    I am definitely on the right track.

    As for managing fibro pain and joint problems.....Again I looked to alternative methods rather than masking the pain with pills. I find warmth helps, so warm baths with Epsom salts, massages, exercise such as stretches, Pilates, yoga and walking.

    I know some people baulk at the idea of exercise but I'm not talking running marathons here......just gentle movement. You must move or the muscles get weaker and stiffer, you must move to get the blood flowing to the joints.

    If you feel you are in too much pain to exercise then take some pain relief first and then just do a few simple stretches or armchair yoga moves.

    I think The more inactive we are then the more inactive we will become and the pain will just get worse.

    At first glance my diet does seem horribly restrictive but with a bit of imagination, and using loads of herbs and spices it's possible to ring the changes. And anyway because I feel so much better there is no way I'm even tempted to go back to my old bad habits.

    Yes I eat the odd ready meal if I'm really pushed and yes I indulge in the odd piece of cake but by and large I eat only good nutritious "real" food. I have completely cut out all the sugar and salt laden empty carbs laden with chemicals, preservatives and E numbers.

    I don't even miss them. I walk past the bread and cake aisles in the supermarket and the smell makes me almost gag.

    I now find I can eat tomatoes with no ill effect and as long as I don't overdo it then I can eat potatoes now and again and even, shock horror, some "real" bread. I still can't manage pasta or rice but that's no real hardship. Pizzas will have me practically writhing in agony so I just don't touch them.

    One thing that I have learned is that it's all trial and error. What suits one person doesn't necessarily suit another.

    For example I swear by my copper bangle which helps my hand, and the copper insoles which help my feet. Some people say wearing copper is an old wives tale with no benefit but I think they help me. They certainly don't do any harm, unlike pumping myself full of drugs which make me ill.

    I am currently experimenting with thyme tea which someone recommended to me.....it tastes quite pleasant so again no hardship. I also am trying out spices like tumeric and ginger. I have also bought some boswelia to try. I did try cider vinegar but It upset my stomach.

    Hope the above isn't classed as "medical advice" and isn't pulled. And hopefully some of the tips might help some of you.

    It would be nice if there was a magic pill or potion but as yet there isn't one so we have to do what we can to help ourselves.
    Last edited by MSE Andrea; 14-08-2017 at 11:25 AM.
    • maddiemay
    • By maddiemay 12th Aug 17, 5:40 PM
    • 3,107 Posts
    • 27,344 Thanks
    maddiemay
    Do you have B12 jabs hun?if so how often ?
    Originally posted by candygirl
    Yes, about 10 years ago I started to struggle about 6 weeks before my 12 weekly injection, after a lot of moaning to my then GP he agreed to let me have 8 weekly (I think he was feeling a bit guilty because he missed a very low iron marker on a blood test a while before this). When I moved north 6 years I was terrified that new practice would not continue with this, but they did and still do. I take a shed load of supplements to help with the PA and the PID, sometimes add in sublinguals of 2 types of B12 too. I also resort to "other measures" which I do not wish to discuss on an open forum (all legal), but will PM you at some stage if you would like to know more
    • candygirl
    • By candygirl 12th Aug 17, 6:37 PM
    • 25,827 Posts
    • 104,623 Thanks
    candygirl
    [QUOTE=maddiemay;72978069]Yes, about 10 years ago I started to struggle about 6 weeks before my 12 weekly injection, after a lot of moaning to my then GP he agreed to let me have 8 weekly (I think he was feeling a bit guilty because he missed a very low iron marker on a blood test a while before this). When I moved north 6 years I was terrified that new practice would not continue with this, but they did and still do. I take a shed load of supplements to help with the PA and the PID, sometimes add in sublinguals of 2 types of B12 too. I also resort to "other measures" which I do not wish to discuss on an open forum (all legal), but will PM you at some stage if you would like to know more[/QUOT
    I think I might know what you are referring to lol Feel free to pm me anytime x
    "You can't stop the waves, but you can learn to surf"

    (Kabat-Zinn 2004)
    • Wednesday2000
    • By Wednesday2000 13th Aug 17, 12:25 PM
    • 1,135 Posts
    • 5,911 Thanks
    Wednesday2000
    Wednesday2000....your husbands wage would be taken into account for ESA, so you may not get that....but PiP is non-means-tested and so is well worth looking into.

    You need to look at how the fibromyalgia affects your everyday life...

    https://www.citizensadvice.org.uk/Global/Migrated_Documents/adviceguide/pip-9-table-of-activities-descriptors-and-points.pdf

    the above link should take you to a list of descriptors and points.....unfortunately it is very much a point-scoring benefit!...one thing to remember is that for each activity you need to be able to do it reliably and repeatedly...so if you have good/bad days then consider what is 'typical' on an average day....just one example, Activity 2 - Taking Nutrition...I need someone to help cut up my food....do I need it everyday? Well, no - some days I might have soup/stew and need no cutting up...or I might have a 'good' day and be able to manage to cut up some soft fish or chicken....BUT, over any given week I need help more often than not...so get the 2 points for this activity.
    Originally posted by Prinzessilein
    I feel in some ways that I wouldn't want to fill out all the paperwork etc.. and then go to the meeting and then be rejected. I seem to have read so many people saying over the past few years that trying to claim is a nightmare. Is it as bad as people say?

    Brilliant info though, thanks for that.


    I have been forced to look elsewhere in order to manage my symptoms. So I looked to complementary medicines and natural healing and pain relief.

    Whilst all this was going on.....I lost my husband and both my parents within a two and half year time frame, had a serious car crash suffering whiplash, so my stress levels were through the roof. At the same time I discovered.I also was just over the "pre-diabetic" range and on the cusp of full blown Type II diabetes, and my cholesterol levels were creeping up.

    Given that my GP had already admitted that there was little he could do for me It was time to take action. So I started experimenting.

    It would be nice if there was a magic pill or potion but as yet there isn't one so we have to do what we can to help ourselves.
    Originally posted by lessonlearned
    It sounds like you have done all the right things.

    I'm trying a lot of self help too as the GP just gave me the antidepressants to help me sleep and said that once my sleep was a lot better I could start going to the gym! I laughed at him when he said that. Lol. I used to do a lot of exercise, but can barely walk for 30 minutes a day now. I'm hoping he is right, though and once I catch up with the "sleep debt" I will feel better.

    I read that fibro can be related to lots of other triggers, emotional stress or an accident or even an operation. I've been under a lot of stress with my husband being ill over the past few years.

    I had my thyroid tested and they said it is in the normal range but that is interesting that you said you saw a nutritionist and she really helped you with your thyroid and other issues. I have thought about seeing one too.

    I agree about the simple things you can do like having warm salt baths when it is cold weather. I have started to have the opposite problem too and cannot tolerate heat in the summer. I have night sweats too, but I have had my hormones checked and they said it definitely isn't menopause yet so it must be related to fibromyalgia!
    "It doesn't cost any more to dream big."
    • lessonlearned
    • By lessonlearned 13th Aug 17, 1:03 PM
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    • 56,617 Thanks
    lessonlearned
    Thyroid testing is a bit hit and miss. And most of the time they only do partial testing so you can get false readings...

    I suggest you read up on that. Basically your thyroid won't function properly if your
    Adrenal glands are struggling. You have to support the adrenals first. If you get them working properly then the thyroid often sorts itself out.

    To help my adrenal glands I just made sure I got lots of rest, even when I couldn't sleep. If I needed a day time nap then I had one. Although if you are looking after your husband who is ill I appreciate that napping may not be an option.

    You can take an adrenal support supplement but I haven't so far because I was taking all the other supplements I mentioned earlier and didn't want to overload my system.

    It does sound like you are suffering from stress overload,,,.,,,I looked after my husband for 9 years so I understand just how hard it is. My heart goes out to you.

    Everyone says "oh the careers need to care for themselves too" but often it's just not possible......you are sometimes forced to carry on, no matter what, even when you are under par yourself,

    In the end this leads to burn out......you live on adrenaline for so long that your adrenal system is shot and you run on empty.

    If you diet is poor or you are eating things that don't suit you, then because your system is under such stress you become malnourished and you don't get the essential vitamins, minerals and nutrients your body needs to repair itself.

    This is when conditions like fibro take hold. Essentially your body is screaming saying "no more".

    All I can say is keep researching and learning. Think about your diet, take supplements, exercise gently when you can and try and rest.

    Adjusting your thyroid function is difficult and even if your doctor did prescribe meds getting them right is notoriously problematic. Too much iodine is as bad as too little and can lead to goitres so do be careful if you decide to take thyroid meds or supplements.

    If you like Japanese food, try miso soup and some "sea vegetables". You will get sufficient iodine without risking overdosing on it. I found it a bit salty but pleasant enough. Most supermarkets have a Japenese section now.

    As for the night sweats.......well you could be perimenpausal......the period leading up to the actual menopause. This is when hormones start to get erratic but we still produce enough oestrogen for our bodies to continue with their ."womanly functions".

    There was a menopause thread on here some time ago. Lots of useful tips on there.

    But then again it could be stress. Stress does odd things to us, especially when it is prolonged.....it can really take its toll on our health and wellbeing.

    Good luck, hope you can get some answers and find a way to help yourself a bit. Self help really seems to be the best way forward.
    Last edited by lessonlearned; 13-08-2017 at 1:14 PM.
    • pollyanna 26
    • By pollyanna 26 13th Aug 17, 2:19 PM
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    • 14,780 Thanks
    pollyanna 26
    Wednesday Your GP will have initially put you on ADs as that is the first stage treatment for Fibro . I'm not sure how long you've had the symptoms before being diagnosed it generally is there long before you seek help and say the words that lead to investigation .
    There will be a period seeing if the ads are helping sleep and anxiety wise . Some help Fibro . My daughter was on one which it was discovered was pretty good at controlling Fibro . Sadly our dr had to take her of it as research was showing it was having a negative effect on those with long term extreme anxiety and panic disorders .
    For some years she has been on one of the most effective Fibro drugs which has made quite a difference . It is expensive so in England is only available to under 60s unless they are already taking it before that age . However it's a postcode lottery as to which trusts will allow it .
    Everyone is different when it comes to Fibro . We all have different and varying symptoms and react in different ways .
    I'm like LL and have never been able to tolerate prescribed meds . My daughter has had lots of meds and the one for her Psoriatic Arthritis and Fibro have really helped .
    I am the unmedicated version of both her fibro and PsA plus in my case OA . The most I take is a plain white paracetamol and rarely antibiotics very few in a lifetime .
    Like others here I use natural things to help .
    As to cause I can't prove this but so many have had challenging times in their lives been caring for others that I think something seems to trigger some so called invisible disorders .
    If LW were here she would tell you the magic fibro drug didn't help her different condition but another one does .
    Don't dismiss exercise . It may sound the last thing you can face right now . In a while a targeted gentle exercise plan can help a great deal .
    If your GP hasn't referred you to Physio at the hospital or the nearest pain clinic ask him about it .
    We discussed Pain Clinics on the thread a number of times . Many of us went a few times for a proper assessment , time with a pain doctor and a little initial physio course . We walked away with exercise sheets specially targeted at our specific needs which can be done at home . Some can be done holding the worktop while waiting for the kettle to boil .
    If you have the energy and strength to read back to the start of the thread there are a lot of posts about pain management , day to day functioning and benefits .
    This a lot to read so I'll leave things here for now .

    Prinzess Gave you a link and some basic information about PIP .
    The only thing I 'll add for now is along with reliably and repeatedly you must also add in safely when performing everyday tasks .
    Read the descriptors and jot down things as and when you notice how you are doing them differently to how you used to . Once you start a new "normal" you forget it isn't the so called norm .

    One final word for now . There is a big fear factor now over disability benefits . Most is all the negative feedback from those have either not filled in forms correctly , sought advice if they needed help to understand how to present their application and evidence from Drs etc or generally not done their side of the process .
    Of course there have been errors but statistics are now showing more positive outcomes .
    The benefits thread on the forum is often taken over by woe is me .
    Prinzess Had a thread a short while ago talking through a recent claim and it was hijacked by a poster who has been pprd a number of times . It was hard to keep it on track but if you can find it you will see positive outcomes .
    Actually it may have been the Disability forum .
    If you click on Ps name you will find it in her profile . I think it was my time has finally come or something similar .
    Sorry for wittering on
    polly
    • pollyanna 26
    • By pollyanna 26 13th Aug 17, 2:28 PM
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    • 14,780 Thanks
    pollyanna 26
    LL I forgot to say that isn't what I meant in the OP by medical advice . I was meaning urging people to stop taking prescribed meds without talking to their doctors . A lot of what you do is similar to unmedicated me

    Candy I can't believe that little ball of fluff is nearly a year old. Where has the year gone? Doesn't seem long since I was suggesting using her as a free hot water bottle when she was cuddling up in bed with you .

    polly
    • lessonlearned
    • By lessonlearned 13th Aug 17, 2:52 PM
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    lessonlearned
    Sorry Pollyanna I wasn't suggesting I was going against your original post, I didn't mean to give offence. It's just that I know the moderators take a dim view of us giving anything that could be construed as "medical advice" - probably quite rightly.

    So I have been very careful not to discuss medical interventions or drug therapies. TBH I don't know much about what kind of drugs there are anyway simply because my GP told me years ago that everything he had in his arsenal was a non starter for me. Even ibuprofen is a no no. Like you paracetamol is about my only weapon. I didn't have much choice but look for alternatives.

    As you say Fibro is just one of many "unseen" conditions where there is nothing to see unlike say a broken limb. As for its causes - again who knows but there does seem to be a series of triggers that sets it off and certain pre-existing factors which lead up to it.

    I have noticed that a lot of fribro sufferers also suffer from digestive issues like I did. There does seem to be quite a strong link to IBS and fibro. And, as you say, a lot of us have been carers who have been under enormous amounts of long term stress.

    I do think that when looking at fibro and some of its sister conditions we do need to adopt a "whole body" approach to healing and/or managing symptoms, especially those of us who cannot take meds or for whom "magic pills or potions" are ineffective.
    • pollyanna 26
    • By pollyanna 26 13th Aug 17, 3:21 PM
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    • 14,780 Thanks
    pollyanna 26
    I do agree with your post LL and was not offended in any way .
    I've been aware for most of the thread that I didn't make things clear regarding what this involved .
    I was shaking when I started the thread as I saw the need for something safe and hopefully with shared support and understanding but had never started a thread and was even less techie than I am now
    The main thing seemed to be hints and tips but didn't really mention a lot else . Being mindful of the rules the medical stuff was mentioned .
    I've been thinking for a while I should gather a few brain cells together and post a better worded post within the the thread to explain things to any new posters who may come along .
    We still get hints and tips every now and then which are always welcome but as in previous threads illness and the changing nature of everyday life take some explaining and none of us have the same experience so a lot is discussion which I feel is useful is necessary before tips and things emerge .
    Never think I'm being critical or feeling offended . Just a bad first post
    polly
    • Wednesday2000
    • By Wednesday2000 13th Aug 17, 3:55 PM
    • 1,135 Posts
    • 5,911 Thanks
    Wednesday2000
    It does sound like you are suffering from stress overload,,,.,,,I looked after my husband for 9 years so I understand just how hard it is. My heart goes out to you.

    Everyone says "oh the careers need to care for themselves too" but often it's just not possible......you are sometimes forced to carry on, no matter what, even when you are under par yourself,

    In the end this leads to burn out......you live on adrenaline for so long that your adrenal system is shot and you run on empty.

    If you diet is poor or you are eating things that don't suit you, then because your system is under such stress you become malnourished and you don't get the essential vitamins, minerals and nutrients your body needs to repair itself.

    This is when conditions like fibro take hold. Essentially your body is screaming saying "no more".
    Originally posted by lessonlearned
    All very helpful points, thank you.xx I think I have been running on empty for a few years now. I even had chest pains a few years ago and they thought it was a problem with my heart, but I think now it was stress or fibro as my ECG was fine. The thing I find so strange about fibro is the pains in my body, they seem to jump all over the place for no apparent reason. I woke up with terrible pain in my heels the other morning after sleeping for at least 6 hours in bed. It's quite bizarre.

    Wednesday Your GP will have initially put you on ADs as that is the first stage treatment for Fibro . I'm not sure how long you've had the symptoms before being diagnosed it generally is there long before you seek help and say the words that lead to investigation .
    There will be a period seeing if the ads are helping sleep and anxiety wise . Some help Fibro . My daughter was on one which it was discovered was pretty good at controlling Fibro . Sadly our dr had to take her of it as research was showing it was having a negative effect on those with long term extreme anxiety and panic disorders .
    For some years she has been on one of the most effective Fibro drugs which has made quite a difference . It is expensive so in England is only available to under 60s unless they are already taking it before that age . However it's a postcode lottery as to which trusts will allow it .
    Everyone is different when it comes to Fibro . We all have different and varying symptoms and react in different ways .
    I'm like LL and have never been able to tolerate prescribed meds . My daughter has had lots of meds and the one for her Psoriatic Arthritis and Fibro have really helped .
    I am the unmedicated version of both her fibro and PsA plus in my case OA . The most I take is a plain white paracetamol and rarely antibiotics very few in a lifetime .
    Like others here I use natural things to help .
    As to cause I can't prove this but so many have had challenging times in their lives been caring for others that I think something seems to trigger some so called invisible disorders .
    If LW were here she would tell you the magic fibro drug didn't help her different condition but another one does .
    Don't dismiss exercise . It may sound the last thing you can face right now . In a while a targeted gentle exercise plan can help a great deal .
    If your GP hasn't referred you to Physio at the hospital or the nearest pain clinic ask him about it .
    We discussed Pain Clinics on the thread a number of times . Many of us went a few times for a proper assessment , time with a pain doctor and a little initial physio course . We walked away with exercise sheets specially targeted at our specific needs which can be done at home . Some can be done holding the worktop while waiting for the kettle to boil .
    If you have the energy and strength to read back to the start of the thread there are a lot of posts about pain management , day to day functioning and benefits .
    This a lot to read so I'll leave things here for now .

    Prinzess Gave you a link and some basic information about PIP .
    The only thing I 'll add for now is along with reliably and repeatedly you must also add in safely when performing everyday tasks .
    Read the descriptors and jot down things as and when you notice how you are doing them differently to how you used to . Once you start a new "normal" you forget it isn't the so called norm .

    One final word for now . There is a big fear factor now over disability benefits . Most is all the negative feedback from those have either not filled in forms correctly , sought advice if they needed help to understand how to present their application and evidence from Drs etc or generally not done their side of the process .
    Of course there have been errors but statistics are now showing more positive outcomes .
    The benefits thread on the forum is often taken over by woe is me .
    Prinzess Had a thread a short while ago talking through a recent claim and it was hijacked by a poster who has been pprd a number of times . It was hard to keep it on track but if you can find it you will see positive outcomes .
    Actually it may have been the Disability forum .
    If you click on Ps name you will find it in her profile . I think it was my time has finally come or something similar .
    Sorry for wittering on
    polly
    Originally posted by pollyanna 26
    No, don't apologise for giving me info, I'm very grateful. I'm on Amitriptyline now, am I allowed to say that on here? It is a very low dose, but it has definitely helped with my sleep. I'm getting 6-7 hours now and before I would only get about 4 hours a night for most of the month.

    The GP sent me for lots of blood tests to rule other things out, but I got diagnosed with fibromyalgia within about 4 months. I live in London so I think I'm lucky as my local hospital and GP are quite good.


    And, as you say, a lot of us have been carers who have been under enormous amounts of long term stress.
    Originally posted by lessonlearned
    Yes, that does seem to be the case for some people. I'm in my early forties now, but when I was younger (around 30) I actually knew two women with fibro (I hadn't heard of it before and didn't know much about it) and they had both taken care of their seriously ill relative in the years before they were diagnosed.

    I've read a few books and there does seem to be a lot of advice about how to change your diet, sleep routine, exercise and vitamins so I'm just going to plod on and see what works for me.
    "It doesn't cost any more to dream big."
    • Prinzessilein
    • By Prinzessilein 13th Aug 17, 4:54 PM
    • 2,009 Posts
    • 9,281 Thanks
    Prinzessilein
    Wednesday2000....I would say you have a better than even chance of getting some sort of award for PiP....go for it!...No, it is not stress-free, and filling in the paperwork was a bit tough because it makes you achingly aware of your limitations...but I managed to get through it all (and feel free to find my thread over on disability - pollyanna is right , it is 'my time has finally come' and it tells of my thoughts from receiving the letter telling me to apply, through to getting the final award letter....just ignore the rather obvious thread-diverter!!!)

    What if they don't give you an award? Well, you will be no worse off than you are right now! (Maybe a bit tired and stressed, but nothing you won't recover from quickly!)....but if you got even the standard for one component, that is a little over £20 a week...you could get that new bed you said you needed!...That's what the money is for - to help make your life on a par with "normality" (whatever that might be!)

    Go for it!
    • pollyanna 26
    • By pollyanna 26 13th Aug 17, 5:03 PM
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    pollyanna 26
    Have sent you a pm Wednesday . It's in the lap of the Gods whether you receive it as it's seems a bit hit and miss at the moment .
    Interesting to read LL on IBS , I am lucky never to have had it and rarely an upset stomach apart from the years I took Brufen when still working , Never again as ulcers were the result .
    DD has had IBS for many years so we are all different .
    Night sweats and general overheating or feeling abnormally cold have long featured in both our lives .
    I just see fibro as a giant jigsaw will lots of different shapes
    If you're asked to describe how you feel it's complicated to explain .
    DDs and her doctor constantly do the is it the fibro , arthritis , both or something else ? scenario .
    Put is this way things are never boring .
    polly
    • pollyanna 26
    • By pollyanna 26 13th Aug 17, 5:16 PM
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    pollyanna 26
    Prinzess I was reading your thread again earlier including the diverter .He actually caught me out when I first replied to you over there twice . I hadn't encountered him before but caught on fast . I see he's back suited and booted and already spotted by all .

    Hope all is well with you and mum . It's been warm and cloudy here today .
    Have you started the shoe boxes yet? I've got some very pretty CCS charts and linen in the stash and hope to make something winterish either a sampler or some smaller hearts or pictures . I do love hearts of all types whether painted wood , stitched or sewn .
    That's why I look forward to shorter days and hunkering down . No doubt we'll be moaning then but we'll see .
    polly xx
    • Wednesday2000
    • By Wednesday2000 13th Aug 17, 6:20 PM
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    Wednesday2000
    Thank you guys for all the info. I will probably read back from the start of the thread when I can.

    It's nice that some people on here understand how I feel and have the same problems.

    I mean I'm not glad that you have health problems too obviously, just that I feel reassured that I'm not alone in this. I think "hidden" illnesses are especially hard as people just think you are fine. I look perfectly "normal" on the surface, apart from when I have a big red face when I overheat in hot weather.

    I always think the OS part of the forum is the most helpful and friendly part of MSE.xxx
    "It doesn't cost any more to dream big."
    • Prinzessilein
    • By Prinzessilein 13th Aug 17, 6:23 PM
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    Prinzessilein
    Yes, I have started the boxes...all the knitting is done (a hat for each of the 4 boxes, and a handbag and pure for each too)...and the usual toothbrushes/paste and soap/face-cloths....and some pens...and some lovely stickers which are actually dress-up dolls!

    Mum and I are both ticking along thanks...I had a rough day, but took meds and slept through the worst!

    The 'diverter' is getting a tad predictable, I spotted his last incarnation quite quickly....and got the latest after his first post...the story was so familiar, and he has a distinctive style.

    I am currently cross-stitching doves for Christmas Cards...a nice activity that can easily be out down and picked up.
    • caronc
    • By caronc 13th Aug 17, 7:48 PM
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    caronc
    Wednesday, if my experience is anything to go by go for the PIP you never know. Yes the forms are a pain, yes I didn't get the award I thought I qualified for and had to go through the reconsideration process and then an appeal, but I can honestly say that everyone I had deal with with was polite, considerate and I was never made to feel as though I was "at it"! It was worth it I was initially awarded the Standard Rate Care and on appeal got Standard Rate Mobility which is a very helpful £300 per month together. Like folk with fibro I have a hidden & misunderstood condition that fluctuates hugely so if you do apply try to focus on the impact of condition and not the symptoms. If you don't apply you certainly won't get an award so what have you got to lose?
    June GC £117/£120, July £185/£170, August £108/£120, Sep GC £121/£120, Oct GC £107/£200
    • pollyanna 26
    • By pollyanna 26 13th Aug 17, 8:05 PM
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    pollyanna 26
    The contents of your boxes sound lovely Prinzess It's a pity you can't see the joy of the lucky recipients when they open them .
    The diverter would be best ignored but sadly he gives such a false impression of benefits it's bad information for those looking for help

    Caronc How are you now ? Any sign at all that the meds are making any difference ?
    I agree with the others Wednesday no harm in looking up the pip claim and doing a dry run of noting the descriptors and how they apply to you before making your mind up .
    BTW This has been mentioned a few times during the thread .
    Arthritis Research UK is an excellent website if you haven't already come across it .
    Fibro is one of the many conditions on that site and you can send for booklets on each subject including the proper information on the condition . Day to day management and different helpful ones .

    One day I'll learn to do links

    polly
    • pollyanna 26
    • By pollyanna 26 13th Aug 17, 9:53 PM
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    pollyanna 26
    I've just come back on to read more slowly through LLs post on Adrenal Glands and for many she is pinpointing an important thing .
    Long term illness can have a massive effect on day to day health and normal bodily functioning for many .
    I also agree that stress and lack of rest contributes .
    I followed her posts over on the widows thread and could see her slowly and carefully identify each impact of caring for her husband and another close family member . She has looked for logical solutions to different things and has also identified the lifting and other areas of a caring for someone which took their toll .
    It's a very trite expression which I myself have used to say " Look after yourself " but really who cares for the carer?
    There are carers associations but does the carer have time or energy to take advantage of an aromatherapy session ?
    I was already diagnosed with Fibro a few years before DD and was obviously living with Psoriatic Arthritis for many years before her diagnosis brought up the genetic link to my mum . We couldn't go back further than there due to lack of records .
    So we all have different conditions for different reasons so mutual understanding , researching , support and sharing how we find solutions is why we are here .
    Hope all have a restful night
    polly x
    • lessonlearned
    • By lessonlearned 13th Aug 17, 11:18 PM
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    lessonlearned
    Don't get me started!!!

    Who cares for the carers indeed......the answer is no one. No one gives a fig. Carers are expendable, they are cheap or often free labour.

    Oh yes. Adult Social Services all give lip service to it, they all talk about the need for carers to take breaks, to be partners or spouses, and not just nurses or carers. But it is just that - empty idle talk - and no one offers any real practical solutions. Aromatherapy massages is one of the better suggestions.....but really which carer has the time, the energy or the money, that's assuming they can get someone to look after their loved one whilst they take that much needed break.

    Help and support, don't make me laugh. I even had to buy my husbands wheelchairs and stairlift, gadgets and gizmos to try and help him, along with incontinence pads because he didn't qualify.

    What?? He ended up paralysed from the neck down but he "didn't qualify".

    Carers save the Government and the NHS a small fortune. Oh yes some carers may receive a carers allowance, but many don't.

    I gave up my job to care for my husband. Big mistake. It took me 18 months to get him DLA to which he was entitled. As it was i eventually had to haul him before a tribunal, in his wheelchair in which he could barely sit unsupported, before they conceded that yes he was eligible. . Then when he was finally awarded DLA I eventually received the princely sum of £53 per week. Ha!

    Same when it came to getting him continuing health care to cover the nursing homes fees when he was completely bedridden, couldn't feed himself, couldnt even turn over by himself. You wouldn't believe the fight I had. It is a patients legal right but you try getting the NHS to assume their fiscal responsibility.

    The State takes advantage of carers. They use us as cheap labour. They know that we will never abandon our loved ones so they exploit us, knowing they have us over a barrel.

    The most inquitous example of this is children becoming a carer for their parent. How dare they exploit children in this way. It makes my blood boil. They are being robbed of their childhood, and their educational opportunities are wrecked. These young carers lives are ruined before they have even begun. Much good would an aromatherapy massage do to help a child carer whose life and health is being destroyed. .

    Sorry for the rant but as you can see this is one subject that is guaranteed to make me see red.

    Then when we have wrecked our health and our finances and we eventually have to admit defeat and place our loved one into a nursing home, they withdraw all financial support and leave us high and dry......too sick to work but not deemed sick enough to claim benefits.

    As my dear aunt once said to me "never put your faith in the State, because just when you need it most, it will let you down". Thankfully she did not live to see my husband get sick and witness me having to beg and grovel for help and support. She would have been horrified.

    Well the State certainly lets carers down, it chews us up and then spits us out when we are no longer needed.

    So when I hear some well meaning but ineffectual social worker pontificating about carers needing to take care of themselves it takes every last vestige of my willpower not to throttle them.

    Anyway i shall be awol for a few days, visiting a friend. Hope you all stay well. Keep searching for answers and doing all you can to help yourselves.
    Last edited by lessonlearned; 13-08-2017 at 11:56 PM.
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