Need advice

I'm new to support groups but I don't seem to be able to talk to family with out getting upset or frustrated.

I was diagnosed in February of last year, since then I have lost my job as a support worker, was refuse benefits, and have now lost my flat and had to move in with the mother-in-law.

I have spoken to my doctor but I seem to be getting anywhere with them. I watch what I eat and drink, I excersise when I have the energy and I keep on top of my pain relief. My family don't understand and say that it's all in my head and that if I lost weight I wouldn't be in pain anymore. I'm trying my best to shift the weight but it doesn't want to budge. I'm in pain all the time, I'm tired and depressed and have no money or luck on my side. Can anyone help me, maybe I'm doing something wrong?

30 Replies

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  • This is the first group I've been in too. It's so much easier to talk to people who understand. Family gets sick of hearing about it anyway. I wish they could understand what the pain is like. But lets face it, we wouldn't understand if we didn't experience it either. Please try to get into a rheumatologist, or even a chiropractor. I don't know what I would do without my chiropractor. I'm sure I wouldn't be walking and working if it weren't for him. Hang in there!

  • Been to the rheumatologist, was told I had fibro and that was about it. No further help apart from exercise and keep up with meds. I've seen a physio which crippled me but was discharged when I wasn't showing improvement. I've heard positive things from people about the chiropractor. Are they costly?

  • Hi Becky, it sounds like you have been through the mill a bit recently. I can relate to everything you say, as can many others in the group, I am sure. I don't have a magic wand, or even any solutions for you I'm afraid.

    It would be easy to say 'things will get better' but there is no guarantee of that so I won't give you false hope. What I will say is this is a wonderful community of people who will understand the difficulties you face and will listen when you need to vent or simply let it all out.

    Re your weight, I am totally with you on that one and although I am losing weight it is very slowly, partly because I often sabotage it by eating too much of things I know are not great but they make me feel better, even for just a short while. I do try to get to my local pool 2-3 times a week and I simply walk up and down as walking on land without support is too sore and leaves me totally overwhelmed with pain and exhaustion, whereas in the pool I am not in pain and not much more tired than I would have been anyway. I hope that helps a little. Take care, Linda.

  • I'm overwhelmed by all the kindness and support I've recieved after only being on this site for a few hours!

    I do enjoy swimming, so once I get a bit of extra pennies I think I may give that a go. I'll try anything at the minute. I just want to have at least one good day, just a little break from the pain so I can recharge and tackle it with a tiny bit of strength.

  • I just wanted to mention the site benefits and work, it may help with benefits applications. Sometimes it's just about the points system. Maybe would be worth applying again. Hope things start to look up for you soon x

  • On this site? Sorry if this is a silly question

  • Hi Becky, I dont know if you have been onto our mother site yet. There is a lot of info there including, symptoms and Benefits.

    The link is. fibroaction.org

    The site mentioned earlier is not part of this site, though i have heard people say that it helpful. benefitsandwork.co.uk Is the link to their site.

    I tend to read up on benefits here and use CAB for help and advice.

    Welcome to our group and glad that you are finding it helpful. :P :P

    Hugs sue

  • Hi Becky464

    I am so sorry to read that you are suffering in this way, and I genuinely hope that you can find some resolution and relief to these issues. It is so difficult when you are in pain and fatigued to be able to change your situation, I understand this very well.

    I was wondering what medications your were taking? As some of them have weight gain as a side effect, such as Pregabalin. It may be worth discussing your drugs with your GP or Medical Specialist to see if you are experiencing any such side effects? I want to sincerely wish you all the best of luck.

    All my hopes and dreams for you

    Ken

  • Hi Ken,

    Thank you for your post.

    I'm currently taking 50mg of amitriptyline (one before bed) and then 30mg of codine along side paracetamol.

    Thanks

  • As far as I am aware, Amitriptyline has a sedative component included but nothing that adds to weight gain. I am taking Pregabalin and I have put on a few pounds as a result.

    Good luck

    Ken

  • Yeah it's meant to make you really sleepy, but as its nearly half 2 in the morning that part have never affected me (which is a shame lol I could do with some beauty sleep)

  • Yep like now i'm feeling so tired but can't sleep and it's 04.30 now

  • Hi Becky464

    You have come to the right place for help and advice and especially if you want to have a 'rant'.

    I have only been a member since about October and have only actually placed a couple of posts but the response i have had has been amazing, everyone is lovely on here and the advice you get is from 'self experience' and not from a book.

    i dont suffer from Fybro, i suffer from Chronic pain in my back and i am having a problem with my stomach at the moment. i also do not get a lot of help from my GP and i also struggle to get my family to understand my pain. I am not sure if they 'think it is in my head' or they just 'dont understand it' so get irritated with me. i know my hubby does but i think that it is him getting more upset that he cant help me more than anything.

    Im sorry i can really help you with any advice about Fibro and the meds that you could take but all i do know is that you are in the right place for help and advice, just chatting to people who understand you helps you to feel better.

    I was feeling pretty desperate on friday night and put a post up about Disc replacement and i have had such an overwhelming response that i feel quite humbled and it has really 'cheered me up' to know that there are others out there who understand what i am going through. i got some amazing advice as well as a few tips which will hopefully make my life a little easier.

    what i am trying to say is stick with us and you will always have someone to chat too :-)

    take care and i hope you get some practical help soon

    diane

    x

  • Thank you so much!

    I'm so sorry to here about your pain and I can relate to family not understanding. Although my mum suffers with Fibro she has been doing so in silence. My dad doesn't really understand and turns his noise up if my mum or I complain we are in pain or if we are discussing meds. But even though my mum has fibro I don't really feel I can talk to her about it either. Guess my family don't really do well with talking about things. I'm luck that my husband is supportive although gets fustrated at times as I'm slow at doing silly tasks around the house, must be hard to remember someone isn't well when you can't physically see the pain they are in.

    I'm guess a good rant and hopefully some advice is what I'm here for. I really appreciate all the well wishes :) I don't feel so alone now

  • Aww Becky ( my daughters called Rebecca we call her Bec :-) ) you sound as low as me at the moment. It is so hard when you have no one you can really off load too. I find it really difficult to talk to my family, my hubby just gets upset and I try not to say too much in front of my 2 'kids' ( 24 and 21 lol) cos I don't want to worry them to much. They both ask me all the time " how you feeling mum" and I reply - fine, but I'm not really!!! They have had to do so much for me and I rely on them so much sometimes it actually makes me feel guilty and sad that I am like this but at the end of the day that is what family is for isn't it to help the ones you love when they need it.

    Don't forget stay in touch it is a wonderful place for help and advice especially if you are down and have no one to chat too

    Take care and get some sleep :-)

    Xxx

  • My is spelt Rebekah😊 (mum wanted to be awkward lol)

    My mum has fibro too, and I still will hold all the shopping bags when we are out and about regardless of how much pain I'm in because I want to help my mum.

    Don't feel guilty about having to rely on you kids for some help and support, it's their was of saying thanks for looking after us now let's us look after you. That's how I feel when it comes to my mum anyway.

    Although my mum has fibro to she never talks to us about it. i feel I can't talk to her thinking she is probably in more pain than me and I'm just making mountains out of mole hills. Then I have my dad who tuts each time either one of us take meds. So it's awkward to say anything.

    I also worry about talking to my husband as he says he feels useless and is upset I'm in pain. So I stay silence and pretend everything is ok. But recently it's got worse and I had to talk/vent to someone. Thank god for randomly finding this site!! I feel a little lighter already

  • Hi Becky464 I can understand where you are coming from. I was diagnosed in March 14 and although I have been to Rheumatology I have never seen the same consultant twice and have not really been given much help on how to cope with it. I have also lost my job through medical dismissal and I am waiting to hear about benefits but I know how hard it is to get them so I dont hold out much hope. I do get DLA (for osteoarthritis in my knees) which took 2 years of fighting for but that runs out in June and the DWP have already sent the renewal form but I cant cope with that and fibro at the moment and CAB in my area were useless. I am waiting for an appointment for pain clinic at the moment which I requested from my GP. He was a bit reluctant but I ended up crying in pain in front of him. He also referred me to sleep clinic where they discovered I also have sleep apnea. Bit unreal really as I dont sleep that well anyway! I am lucky as my other half does try to understand but he has suffered with his back for 20 years (he cant get benefits either). Could you ask your GP for referral to pain clinic? Ive heard they help you with coping mechanisms so I am hoping this will work for me. Sorry dont have the answers but I just wanted to let you know I understand. Gentle hugs Joolz.x

  • Forgot to say I have put loads of weight on in the last 3 years and I am so fed up with health professionals telling me if I lose weight I will feel better. I probably would but I eat healthily (and a dietician has said so) and I do aqca once a week as this is the only exercise I can do (until I can no longer afford it) and my TSH for thyroid is high and GP wont do anything about it because he says it is in normal range (even though it isnt) and I know that a lot of symptoms of hypothyroid are similar symptoms to fibro including weight gain. Sorry I am going on a bit but get fed up with no one listening. take care. Joolz.x

  • Keep pushing and make yourself heard You know your body so you know what it's not right. Hope you get somewhere

    X

  • Hi Becky,

    So sorry that you seem to be stuck in between a rock & a hard place!

    We have all been there & visit it more often than we'd like, I have suffered Fibro since about 1994, diagnosed in 2000 had to take redundancy from work in 2002 aged only 42, I have been unable to work since! I was on a host of medication, I decided to wean myself off medication as I felt I was not getting too much relief & felt that I was suffering more because of the toxins I was puting into my system! I have an underactive thyroid which weight is a symptom & makes it really hard to lose it as difficult to exercise but, since stopping meds & joining a private gym all family gave me money for birthday & xmas only 3 months apart & I saved what I could myself unti the March & joined, that is when I improved albeit minimally to begin with, but what a difference it has made to my life, at first I walked in the pool, taught myself to swim, being in the water supports muscles & joints giving temporary pain relief, I now do 3 aqua aerobic classes a week, just at my own pace, lack of sleep a big problem but after aqua I go home straight to bed & get a good restorative sleep for 2-3 hours, over time it has helped me cope with day to day living, the strongest thing I take for pain now & only on my worst days is paracetamol it works for me, we all have different pain thresholds, I hope this helps you to know you're not alone! I also have pernicious anaemia which I need B12 jags every 8 weeks which gives me an energy boost! Off to GP now for Jag, sorry for long comment, if you're still here & not fallen asleep lol I wish you the very best of luck coping with Fibro, love & hugs to you Becky take care ♡♡♡xxx

  • Hi,

    I'm 26 and I feel like my life and be taken from me. I'm on amitriplyine 50mg, codine 30mg and paracetamol every day.

    I feel no benefit at all.

    Due a meds review so I'll be bring it up then.

    Fibro is horrible. And it's really knocked me on my butt! So much has happened since, just need a little positive.

    I'm tired now (although never tired enough to actually sleep)

    X

  • I think there is a link for an email address to send you the guides from benefits and work. On the fibroaction website if you look in benefits x

  • Hi Becky Amitriptyline will make you put on weight most quacks just fob you off about it as they get a bonus for prescribing quite a lot of meds like that plus to be honest i don't think many even know what they are prescribing you with effects etc more "that will do approach"?

    I was on it put weight on knew or found out about from another place i use which has good med knowledge etc anyway asked quack about it she said no no can't see that! yet the chemist straight away said this will make you up weight on!

    what it does in men for instance is screw your hormones up and metabolism it's what put my Testosterone very low as i had a total imbalance i also got heart palpitations and many other things it also add's to bladder problems and a whole list of things varies between each person it could also be part of the reason i have a pituitary tumor they found i have?.

    It also causes Gynomastia in males i guess by messing hormones with lowering T if anyone wants to look google it on the Gynomastia site it's about the top problem causing med! so don't just take my word for it.

    The reason i got it confirmed about T problems is a friend was taking he had prostate problems was worried as thought he was getting as his dad is very ill from that and had palpitations also and many other things and started having weight problems and he works out every day eats very well too but then had a medical they found he had low T!

    I do lot's and lot's of medical type research even my doctor have now say's i have info that he don't get/see.

    Did speak to someone that runs a public/private clinic for fibro person has it themselves and they said Ami don't work only for very short time then body gets used to it then you get all the side effects without the help there advice which was what i was doing already was to vary the amount day to day.

    Fibro and it's family work in an hormonal way back door approach not like normal pain through front door as i say as if you break a bone etc take pain meds and dealt with but fibro don't let you get that relief.

    But with medications there are no "free" meds all of what you take have many other side effects and problems not always apparent for quite a while though.

    I myself don't take any apart from one thing i tried and it worked and it's something i could use if i needed to.

    But what i do do is sleep plenty as much as i can i go to bed when i feel i need to which could be anytime and get up when ready as many times i wake up but just can't feel that key to fire me up.

    sometimes i wake up really early can't sleep might get up for while then after a while just have to go back to bed or problems start as for one i will feel very cold can't control that as it will mess my breathing up too.

    Find something that you enjoy doing cycling is good for fibro as non weight bearing i like a potter around when i feel upto it have a few routes that i can easily get home if need to as my fibro gives me really bad IBS and I bladder so have to keep on top of that all the time but if im sensible can lessen it so can get out a bit.

    But my best advice for anyone is to find out what works for them as there is "no one size fits all"

    If anyone needs things to hush up yappy family/people that are saying it's in your head blah blah well you know the types look up Counting my spoons julia is on face book to anyone can join

    In the USA and Australia they are soo far ahead of the UK in Fibro research many years

    But always happy to help if you need any this is first time ive log in since early last year? but read your post and thought had to reply.

    Do take care

  • Thank you!!

    You have been very insightful and I will defiantly be talk to to my doctor about my meds!! And I'll be will doing my research before hand to so they can't fob me off!!

    Thank you for your help!!!

  • your very welcome.

  • Hi Becky, I have just read your posts and wanted to give you a big, gentle, hug and to let you know I understand how you feel. I have had weight problems my whole life and suffered with 'helpful' hints and comments from my family. When I left home I distanced myself from them, especially when I met and married my Hubby. He has been the saving of my life - almost literally at one low point. I now have the confidence to face the world as who I am. I'm sorry that you, and your mum, are not getting the support you need and deserve. Your family need to read some of the fact sheets about fibro, and they need to realise that it's not in either of your heads and it's nothing to do with being overweight! Whenever I am chatting with my Dad these days, I can tell when he's been talking to one of my aunts about me - he says things like, 'are you sure you wouldn't be feeling so bad with this fibro thingy if you don't lose some weight...' I hope you and your mum find some solace soon, and I hope things start looking better for you and your hubby, good luck and gentle hugs, Julie xxxxxx

  • I'm glad you too have such a lovong and supportive husband. I too am bless with having such an amazing man in my life. He helps me so much and is my reason for having strength.

  • Fibro and weight are not related, if they were then I wouldn't have it as I'm a 12/14, it's a cop out those who don't have it saying about our weight, but of course if they had it, the world would end...

    my sister used to think the same, that I wasn't trying hard enough until one day I went mad and couldnt hold back..i told her I was trying 100 times harder than everyone else, that I wake everyday feeling like I've been run over, and that's only after getting to sleep at 5am, I haven't slept through in 6 yrs.

    I don't go out, this isn't a life, I also have spinal issues too, anyway she saw how I felt and ever since has been an absolute rock, she even took me to my pip the other day...she always now asks how I feel and how my pain is...

    I don't think they understand what chronic pain feels like, to not have the energy to stand up or hold a cup..keep telling them though, they will get it eventually.....

    Keep going, and rest wherever possible..

  • It is so difficult to try and get anyone to understand. I feel sometime when I am talking to the doctors that they are either not really listening or are waiting to catch me out.

    I've lost so much in the past year (job, flat, independence) that I just nod along with what people say as I just don't have the strength to argue with them.

    I love my family but they do make me laught/cry with some of the crazy things they suggest.

  • In the USA fibro is classed as an illness now because of what it does to you.

    Julia from counting my spoons had a good summing up of it "it's like living with a nagging child 24/7"

    Many just say/think it's a pain thing! no it isn't it effects anything nerve or muscle and it's like living with a roulette wheel as you never know which number it's going to land on today.

    As along with the raynauds i wake up sweating or shivering in the night rarely ever sleep like a normal person if i get tired i become very cold and can't shift it like other day just went back to bed and was freezing cold in bed just could not get warm.It effects your eyesight with the muscles and nerves being weakened so either slow to respond or eye imbalance.ive lost most of my sense of smell sometimes it's better as get sinus problems along with they say asthma but the pumps don't work and get loads of rubbish coming up.

    Muscles get tight as loose there stretchiness/elasticity and many get flat feet and lot's of feet/hand pains

    Plus the pain in base of spine i never know why they don't add that to signs/pressure point test as when was in hospital as could hardly breath while back and nurse dealing with me said his niece had fibro like me thought had MS she had really bad pains in coccyx like me so a lot of these things are generic but never picked up/joined together.

    But the biggest things is that over here they never check your hormones properly.

    Read Dr John Lowe and Mercola's article on the thyroid as it's not that the thyroid is wrong/not working but it's whats round it and how it inter faces with rest of your body.

    bit like going to paint the house have all the bits but can't get the lids of the paint tins!

    but what they have found is people with Fibro are missing/have certain hormones wrong and that is what needs looking into/working on.

    the trouble with meds is that they start a chain and you end up taking a box full a day because you have gone full circle as most are to deal with the problems the others have caused but another things is that a lot of the meds do actually stay in your body stored in the fat because of the make of the med.

    Heres one for you as an EG! did you know that when they bury bodies that they don't decompose like they should! you know why? It's because of all the preservatives in the food it builds up in our bodies and stays there.

    one reason why i never eat bread like kingsmill types try to steer well clear of preservatives/Artificial sweetners and rarely eat things from Deli like hams/bacon and never eat sausages unless proper quality farm type as have a farmers market that does good ones.

    Another thing you know those polystyrene cups and i guess boxes to but more cups that have like a wax coating that builds up inside you as don't pass through you there was someone that only drank from them all the time and had to go into hospital to have a ball of it removed from his stomach!

    So these days you have to watch what you eat and drink very carefully

    One to steer well clear of with fibro well for any reason really is cokes/cola's/Dr peppers etc as that drains your calcium/vit D as toxic to your stomach as a acid.

    the artificial sweetners lock the calcium into the food so you can't absorb it so you become deficient one of the reason for increase in rickets and arthritis.

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