Endometriosis UK
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Extreme fatigue

Do any of you get extreme fatigue, headaches body aches and extreme thrist? 😮 What do you do to get rid of them 😭 I feel like I'm going pass out any second 😢

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Yes I get exactly the same. I struggle to get up in the mornings. So hard. I also do 12 hour shifts. Try taking some iron vitamins or Berocca xx

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Its tough 😭 I think this is one of the hardest parts of endo 😢 Thank you xx

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Oh yea I do it's so hard. It's really unpredictable and some days/weeks I feel worse. I haven't found anything that helps apart from resting and staying off work. It's not ideal but other symptoms get worse if I am exhausted x

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It is hard 😭 I work at an arts charity and even being sat at a computer is exhausting I'm unsure whether to go home or not 😴 Xx

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I hate being off work but I am more pragmatic about it nowadays and think my health has to come first. I know I feel a lot worse in lots of ways if I push myself when I am exhausted and as every day is a battle with endo I figure I need to help myself as much as i can. It's not easy though and I constantly feel I'm letting work and family and friends down xx

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Me too 😢 You are not alone 😢 I think for me as well I had a tough mother who would never let me be off school so its hard justify to myself that its okay to take time off 😢 My mum has got better and knows I'm in pain so she supports me now when I take time off but its my boyfriend thats like you can fight it which makes me feel even more guilty when I take time off 😢 Xx

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Oh bless you. It's so hard for people to understand what it's like. It's good your mum is more understanding. I wish it was a case of mind over matter! Just isn't like that though is it? 😔

I'd say if you feel like that then go home put on some comfy clothes and have a good relax/sleep. Our bodies are constantly fighting for us xxxxxx

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Me too 😢 I dont understand those people who are if you think you will be better you will be 😂😂 I want to but I only work til 3:30 so might as well stay but I dont feel like doing the washing up when I get home 😉😂 do you get extreme thrist as well? Do you also get dizzy? When I stood up I felt like I was going to go 😢 Xx

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I do get quite thirsty but I do drink a lot of water and herbal teas. I don't have caffeine anymore. I only occasionally get dizzy. Is it maybe partly low blood sugar? Xxxx

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Aaaah okay 🤔 I might mention that to the doctor because my anaemia test came back as normal but I still keep having dizzy spells nearly everyday 😢 Xx

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Ask the doctor to do a ferrtin test it’s to do with iron stores!! 😀

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Would that be tested in the normal anaemia test? 😮

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No you need to ask for a ferritin test mine was so low I had ferject infusions I felt so much better after i had them I can’t take tablets as it hurts my stomach as I have stomach issues!! I now have problems with vitamin d PTH and low calcium so that’s made me so fatigued nausea dizzy headaches etc Im waiting to see a stomach specialist as they found scar tissue and adhesions top of stomach when they did my hysterectomy 3 and a half months ago I had adenomysis of the uterus I’m still in so much pain stomach and pelvis 😀

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Ooh interesting I have stomach problems but being tested for crohns and celiac if they come back negative I will mention it 😮

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I’m the same. Constantly tired. Currently a student nurse so that probably makes me even more tired but I can’t cope. I get home from a shift and collapse on the couch or my bed and sleep till the next morning and I’m still tired but I haven’t been to the doctor about this so not sure whether it’s linked to my endo or not x

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Oh no 😢 I'm sorry but thank you for doing what you are doing I would of been a nurse but cant deal with blood or sick 😂😂 oooh it must be I was unsure because I had a headache and dizzyness and extreme thrist I thought it might diabetes I keep losing weight so thinking about potential stuff and what I should tell my doctor 🤔 Xx

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It is a sign of diabetes so you should get it checked just to be safe. I have a headache near enough everyday and have been given migraine tablets but I’d rather not take them as they make me drowsy. Chronic fatigue is also a symptom of endo so it might just be this disease I wouldn’t get too worried and stressed thinking about diabetes but I would go and get checked if I was you xx

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I'm being tested for gastroparesis and crohns so next time I visit the doctor I will mention it 🤔 Oh no that sounds awful 😢 Xx

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I was just going to suggest getting the gp to do a fasting blood sugar test and also to check for anaemia. Just to make sure. I have chronic fatigue too from endo, it’s just horrible. I find paracetamol sometimes helps. My days are always fuelled by caffeine and I have an unhealthy relationship with sugar, using it to boost my energy - does anyone else suffering with chronic fatigue do that? Hope you have some better days soon x

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I've been checked for anaemia which came back negative it confused me cause I had the anaemia symptoms 😭 I will mention it 🤔 Tbh I dont have sugar for energy but sweet things are my favourite thing in the world and I've read endo could cause a sugar addiction because everyone goes for chocolate on their period 😂 X

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Yes I experience extreme fatigue. I follow a lady on Instagram who has Endometriosis and her Dr suggested Vitamin D so I have started taking these to see if they help. I get the dizziness as well and headaches behind the eyes, bad aches in my right leg and right arm. I have also changed my diet, there’s an app called The Endometriosis Diet, there’s a lot you have to cut out but I feel better already!

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Ooh I might mention it to my doctor 🤔 I did have my blood taken but I dont think my vitamin d was tested 🤔 I've removed gluten out of my diet and cut down on red meat and dairy but not trying to change my diet too much because I may have gastparesis or crohns as well so until thats diagnosed and I know what I need to do I'm not cutting other stuff out 🤔

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Hey there deary. How are you doing? I am really sorry to hear about you... It must suck to feel like that often. I wish I could help you somehow... However all I can offer is pretty much an advise. Have you tried multivitamins shots? Not shots like vaccines... They are called multivitamin shots here in Italy! It's just a pill that dissolves in water. Multivitamins are great in such cases. I think that even people with no health complications can take them. It can help you in more than one way. Like it will keep you hydrated while giving you energy!

Remember to stay away from energy drinks. They might seem appealing at this stage but trust me they ain't! They'll do you harm.

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I'm a bit better now 😮 Hmmm I might look into that 🤔 I do take multi vitamins but they might not be strong enough 😮 I've never actually had an energy drink so I will stay away 😂

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That's some great news. I am glad that you are feeling okay. Slowly but surely you will be as healthy as you've been before. Or at least I hope so... Well if you are feeling better no need for stronger medication. I just thought that what you were taking wasn't enough. Usually a single vitamin might not be enough. You need to take everything at once... But the again, since you are feeling better no need. Don't fix something that isn't broke I say. Energy drinks are basically caffeine on steroids. They have a million side effects. Super wise of you to stay away from them. Anyway, glad to talk to you! God bless you dear. Hope you get well pretty quickly!

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Today I was drowsy again but I've had an ear ache and sore throat so I might be starting with something 😂 For a year I havent been healthy I've lost 17kg but hopefully when they find what else is wrong with me I will be healthy again 😂 But thank you 😊

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Ear ache and soar throat kind of gives it away... I think you cached a cold. With enough tea, it will be gone pretty soon. Also it feels like I crossed my line... I am really sorry dear. I didn't intend to remind you of what you went through... I am really sorry if my comment made you feel bad. I was just trying to help.

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Hmm it maybe 😮 Aww its fine I found it amusing even when I feel better I'm still losing weight 😂

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I found women specific vitamins made things so much better. This time last week I could barely make the end of a day without a crippling headache and now since taking them I feel like I have a load more energy like I can't even describe how much better I feel, waking up feeling refreshed and having my evenings back . Not sure how long it will last but it's worth it, even if I have to alternate months on and off for them to work

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Oooh thats sounds amazing 😮 What are they called? 😮

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Yes :( some days it is so crippling i cannot even work. Have not found a cure, BUT with that said, I did have a much better 3 months a few years back when i was struggling with extreme stress and lost 20pounds in a few weeks because i could not eat for a month (only liquids). Somehow, this unintended fast gave me extreme energy for the following 3 months! I had all the energy in the world, which i have never in my life experienced before. After 3 months of normal eating it started crushing down again. I have wondered about what the reason behind this was, and have come to belive that i killed off some kind of yeast/fungi/bacteria with the fast, which i slowly built up again returning to my normal ways. I have endo and EDS and others, so feeling energetic has never been familiar to me. I read somewhere that endo and systemic yeast overgrowth can actually go hand in hand. I am trying to duplicate the situation in a healthier way now to see if there is any truth. Hard though when you are exausted from morning till night.

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Oooh thats interesting 🤔 I wouldnt be able to fast though I get really really bad hunger pains 😮 Unsure if they are diabetes or not so I really dont wanna attempt a fast 😂 But I can see where you are coming from 😮

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I totally understand! I am also trying a different approach this time around (cannot afford to lose all that weight) mainly a ”yeast-killing-diet” (no sugars at all or glutenious grain, or yeast), but am not far enough to advice :) i am at the point where i will try ANYTHING. Get your sugar levels checked and check into it if you are at the same point of frustration as me :) cant hurt cannit...

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Once I've found out whats wrong with me even if its not diabetes it maybe crohns or gastroparesis I will have to change my diet accordingly so thank you for that diet to look into 🤔 I will struggle with the no sugar side 😂😂😂

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Yep same here 😂

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Oh my god 😂 Did they fob you off with ibs years ago as well 😂 I've had to lose 17kg for them to listen to me 😂

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Yes, IBS is so easy to blame so they don’t have to investigate further. And since the problem has been on for years, they just said ”hey but you’ve had this for so long, it’s just your quality”. Now finally they are looking into it! 😁 we’ll get there, stay strong 💪

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Oh and they find it easy to blame it on mental health as well I got asked if I was bulmic and was then diagnosed with anxiety and ibs 😂 I'm happy they are finally listening to us 😊 We will get there and soon I hope I feel like mines getting worse again 😤

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I have constant nausea and fatigue at the moment! I feel your pain gal! Keep strong xo

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Hahaha my life for the past year has been that 😂 I feel ya too xo

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Are you on any drugs? The thirst could be related to that or your dehydrated. Could be kidney infection? Is your urine clear and light? If it continues doctors visit perhaps? Exhaustion/ headache can be linked to it as well. But Endo does have some weird unexpected symptoms. x

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I'm on anti acids atm because the doctor thinks I might have hpolyri or gastparesis or a stomach ulcer as well as endo but I think I either have crohns or diabetes (family members have them and I've lost 17kg over a year) 😮 I'm going to go to the doctors on monday I was just unsure if extreme thirst was endo 😮 My urine is clear though so dont think its a kidney infection 🤔 Thank you though x

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Hello Abi _97, yes I do most days.

Unfortunately haven't found anything yet that reduces it or makes it go away, this includes vitamins/supplements, strong painkillers,etc. I did get some blood tests done just before Xmas to rule out any other causes such as anemia, low iron levels, thyroid issues,etc. but results came back all clear.

Since the doctors I have encountered and am currently dealing with (both NHS & private route) simply do not understand or don't really care (either or both!), I have resorted on my own to add extra vitamins to supplement my diet (given that I also cannot eat meat and other food produce that are good for helping obtain energy). So latest I am trialling are Vitamin B Complex, Vitamin D, Coenzyme Q10 & L-Glutamine. The latter apparently is supposed to help alleviate IBS (which is what doctors think I have).

There are many days when by body literally starts to shut down by 2-3pm and most of the time upon arriving home back from work, I have to go straight to bed.

Yes, I have fallen asleep while sat on the toilet, while taking a bath, reading books, in the cinema,etc..

It's a total nuisance, specially since I used to be quite an active person.

In terms of thirst, I usually drink a lot of water, but as extra measure have added a water bottle to my bedside table.

I'd be grateful for any tips from anyone on this forum.

P.S: Berocca is wasted on me (as does the contrary, it makes me really drowsy), none of the "over the counter liquids" such as: Feroglobin Plus, Metatone, Spatone work either, nor do Guarana tablets.

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Oh no thats sounds awful 😭 I know how you feel I never used to be active but now I dont wanna be active even more since I'm so tired and have developed exercise asthma 😂 I might look into how the different vitamins work and see which is best 🤔 From personal experince if you are dealing with daily nausea and stomach pain dont let them fob you off with ibs a year ago the doctor I saw asked if I was bulmic because in a few months I had lost 6kg then they diagnosed me with ibs and anxiety skip ahead to a year later I have lost 17kg and never have a long break from stomach pain 😢

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Hi, I was feeling exactly the same and read giving up certain things in your diet may help. I’ve given up red meat, caffeine, alcohol and gluten. I appreciate this is not for everyone and is quite tough but I found it has helped no end. It may not work for everyone but you could give it a try

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Thank you I have given up on gluten never drank alcohol and only have the occassional tea and red meat 😮 Diets dont seem to help me as much as I hope I wish they did 😢

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when I get extreme fatigue due to pain I take Ginseng and that seems to help, so if you have had medical tests and find it is not thyroid or anaemia only then I would look at herbal supplements like ginseng. I have B12 injections but I find towards the last two weeks I get exhausted to the point I cannot sleep and often it is because the pain fatigue I take ginseng and then once I have had the B12 injection then I come off it and so it is not continuous and of course it is quite expensive to get the ginseng root.

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Thank you for that tip I will look into them 🤔

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Sorry for jumping into your conversation. I also struggle with extreme fatigue and was wondering did your B12 blood test come back normal? Because mine did and I was wondering if you were getting the injections as a boost for energy?

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Hi Purple001, I had struggled with fatigue for years and used natural products such as ginseng, ginger root and lots of unhealthy sugar. It was not until I had a hysterectomy and still had pain, that a gastroentrolgist whilst still at the hospital did a test and he discovered that I was I needed B12 injections and up until then all the tests the GP did were normal. I often find maybe just in my mind that when I have had a blood test at the hospital it will often show low in folic acid or haemoglobin yet when I have a blood test at the GP surgery it always comes back normal - maybe because it takes time to get it to the lab not sure?. I was then given a B12 injection every week for four weeks to get my B12 to the right level and then every 8 weeks and then progressed to 12 weeks but I found by 8th week I was feeling very low and tired and everything took a lot of effort. I then asked my Gp if I could have the injection every eight weeks and he said no but can have it every ten weeks. So for two weeks in between I do take the ginseng try and walk a lot more to get exercise to give me energy, , but end up craving for sugar to get through the day and finally as soon as I have my B12 I feel a little queasy for the first couple of hours but then I get the spring in my step and I cannot even stand to look at a bar of choc or any sweet stuff. I started a diary and found this repeated.

The blood test is pretty good, my gastro found that I was just not absorbing the vitamins and minerals and that is why I have injections, I do know a lot of people can take B12 supplements. I even tried the B Complex drops under the tongue but they did not work either.

The other thing I did try was the Jute Mallow I bought it as dry herb and used it in curried only like half a teaspoon but found that yes it gave me a little bit of energy but only for like a few hours so not sure if that is really what it was or I imagined it.

Maybe worth asking for a repeat of blood tests but again there could be so many other reasons why you feel so tired. I can takes lots of supplements but nothing helps until I have the B12 injection.

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Hi Xindy, thanks so much for the detailed reply. I had a blood test done a few years ago before I was diagnosed with endo (was diagnosed in october 2017) and I was very low in B12 and needed the injections so I had one a week for four weeks aswell but I was never offered to continue every 12 weeks because my levels looked ok in blood tests.

I've suffered with fatigue for the last 3 and a half years and was diagnosed with chronic fatigue but I haven't found much to help it... So I thought the b12 injections might be worth trying but if my tests came back normal I doubt my gp will give them to me? I tried ginseng before around exams but didn't find it to help me much but might try it again. I'll look into some of the things you sent. Thanks again!

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Sorry one last thing, if you don't mind me asking how did your gastro find you weren't absorbing vitamins and minerals? I am currently seeing a gastro and I think I may also have this issue

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That is ok you ask away, no need to apologise we only learn by talking and asking. The gastro looked inside my tummy and small bowel and found if I remember correctly some valve that was not working, this is now going back to 1996 but I have had B12 injections since. I am sure if you go back to the GP he may give you B12 supplement or injections if your blood tests are borderline. Have you had your thyroid checked, I was also diagnosed with underactive thyroid and have 100mg per day and I know when that is not enough as I start to feel tired and cannot think straight and of course put on weight. You know Purple001, start writing a diary of your day to day activities and I am sure you will find the answer to your fatigue, if it is B12, you will start to get very dry scaly skin, and what I call brain fog, start to lose memory and lose appetite. But the real test obviously is a blood test, I had a friend who had to go to an endocrinologist private because she was piling on weight and all the blood tests seemed normal but she found that she had to have some infusion not sure what it was. Because you have been B12 deficient in the past it could be that you have changed your diet maybe not having enough carbs or could even be folic acid causing the fatigue, difficult to say as sometimes you can have what I call pain fatigue, I recently (January 2017) started to get my right arm hurt and tried to exercise it, thinking I must have slept funny, not realising that I was making it worse, turned out that after six months of sleepless nights and lots of painkillers, I had not only got anaemic but had sub cranial impingement, which mean I had to have an injection. In other words sometimes you could have something going on in your life that you think is ok but is taking up all your energy in thought and this can make you exhausted. This is why I have diary so I can see what makes it worse and if anything makes it better. It is not easy to tell the medical profession that you just do not feel well and have no idea why as they have no idea till they can match the symptoms. First of all do a seven day diary, i.e. what you do daily, what you eat, what you drink and what exercise you do. Do this over seven days and you will find your answer, if you find nothing helps then get some more blood tests. I remember going to the GP and he said why can you not walk straight and a few days later I was in hospital with emergency hysterectomy. I had collapsed at work thinking I have been to see my Dr and everything is fine.

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Thank you so much for all the information. I've had an endoscopy and colonoscopy so I assume they would have picked up if I wasn't absorbing nutrients during them? I have had loads of blood tests and think thyroid was included but it was a good while back so I might ask for some repeat tests to see if anything has changed! It's so difficult to pinpoint what causes the fatigue since it's a symptom of so many different health conditions. I guess it's just a case of managing it and finding something that works, which I have yet to find... I'll definitely try the diary and see how it goes! Yes I definitely think we know our own bodies better sometimes, I had appendicitis and it went undiagnosed on two hospital admissions when I knew all along I had it. Thanks so much for all your help! I hope you're doing ok xx

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just something else to consider, I have had a sub total cystoplasty in 2002, and have been on antibiotic a day to prevent Urine infection. Six months ago I had a sub acute bowel obstruction and I managed this conservatively i.e.stop eating solds and have clear fluids for 23 days and finally it cleared, after this I was very tired and blamed it on aftermath of not being able to eat. after another month I was still exhausted so much so that I would fall asleep talking to my daughter on the phone . I went to the doctor had my B12 went on folic acid, took multivitamins, had the usual pelvic burning pain but not like the urine infection symtoms, Urine dipstick showed infection and blood in the urine but the culture did not show any infection. I gave up a really good job because I could not think due to fatigue. I started a diary and found that my urine output was not nearly as much as I was drinking. I drink 2 litres of measured clear H2o luke warm not cold. I also noticed that my taste was not good, I also had fishy smelly urine. Well it turned out to be another urine infection without symptoms and once I had taken the antibiotics for three days I started to feel better, within a couple of weeks of getting clear of infection I was able to hold a conversation and missed work, thankfully they accepted me back. Like most of us on this forum I wish and pray that a cure will be found for these unknown conditions that take forever to give us relief.

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Dear Purple001 just remember it takes time but you will get to the problem. Please do keep in touch and if I remember anything else that has helped me over the years I will certainly let you know.

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Hi I'm so sorry for such a late reply! So sorry to hear all you have been through it sounds awful, I'm so glad to hear you've found something that works for you and are doing much better. Thanks so much for all your help I'll definitely take your advice on board.

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