Feeling lost and upset

Hello my fibro chums,

I'm sorry to post a miserable blog but I'm really struggling at the moment and need some kind words.

My fibro was always very mild and I could work full time and even swim a few times a week. I used to even be able to go to the gym!

In this last year I have had a considerable amount of family and sometimes work stress. I think this has triggered my recent flare up. I've been in this flare up for about 5 months but it is not getting better, in fact I feel worse every week.

I cut my hours down and have started working from home a lot more. I've also switched to nortriptylene (which I've written about recently.) I'm anaemic and have low levels of vitamin d so I am taking tablets for that.

I'm trying to do everything that I should to help myself get better. I am experiencing a lot of stiffness and pain in my feet, my legs feel like they are being crushed or squeezed all the time and they feel weak and wobbly now most days. This has affected my ability to walk a lot.

I have daily brain fog, serious fatigue, headaches and daily nausea plus dizziness.

I've been trying really hard to keep positive and look after my fiancé and cat as well as giving emotional support to friends and family. I don't want to become so self involved I push them away.

But I'm really frightened I'm going to get worse; that I won't be able to work again fully; that we'll struggle without the money I bring in. I'm also worried if I stay like this that I won't be fit enough to start a family. This idea is very upsetting.

Work have been understanding so far, but they don't understand what fibro is and it's tough trying to educate them. I feel they think once my new meds kick in it will cure me. They tend to ask if I'm better on a daily basis, as if I have a cold. 'Are you feelin better (yet)' I probably make the mistake of telling them what they want to hear to keep them happy and keep my job secure.

I'm sorry this is such as long post. I usually try to keep mine short and sweet to help those who are tired with brain fog trying to read!

I hope you are all having good days.

Lots of hugs to you,

Zosie xoxoxo

16 Replies

  • Morning Dear Zosie,

    Firstly a gently hug a cuppa - of tea coffee what ever you fancy- okay now sit down. I am so sorry Fibro has caught up with you. I too used to swim and do all ssorts . I had a beautiful shop and at this time of year it was so lovely people came from far and wide for my Christmas decorations. It was hard to give up but I had to accept that I could not do it any more. The more stressed the worse it gets. We all have this to cope with and there is no easy answer accept when you are feeling bad try and rest relax it will ease off but it takes time, Have you a good friend who you talk with that can help enormously or PM me if you need a chat.

    Hope I have soothed you a little but hey next time can my cup of tea be Hot please :) Smiling is a great relief as is being silly do join the panto crew tomorrow xxgins

  • *hugs* for you, I'm sorry you're feeling so bad right now. When I was at work, I gave the headteachers some pages I'd photocopied out of a book to explain fibro to them. I'm not sure how much they appreciated the info but I felt that at least I'd done my best to explain things. Can't think what else to say right now (damn fog!)

  • You sound like I did Zosie, I have had to reduce my hours at work and now I am getting worse again and even like you I push myself and tell bosses im ok Im not!, im sure like me you ware yourself out and end up falling asleep when you do stop, it is hard but we do need to say to ourselves when I get to this point I will have to give work up, I know like me you don't want to do that but our body with Fibro and other things will mean, we have to.

    Hope your flare goes soon :)

    All the best Cowsrock x

  • Good morning zoisie,I haven't been on here for a day and yours is the first post I've read and I had to reply to you.My heart goes out to you as a fellow fibro friend who has been experiencing a long time in flare up myself.You shouldn't apologise for your post being long or miserable,in fact it's not that long and your not miserable but all that you are experiencing is hard and Iam so in awe of you that you can work in a flare and be such a great support to your family and friends on here.Obviously being anaemic and low in vitamin d is going to make you feel very tired and unwell so maybe it's just going to take a bit of time for them to kick in.You say that you have had a lot of stress,are those stressful things still present in your life or is it your flare that is causing all your stress now?Let me also reassure you about the not being fit enough to start a family.I became pregnant 5 years ago and yes it was a struggle,and I had no support as well as my hubby at the time was an active alcoholic but I did it! My support I have now is from social services as I have no friends and family helping me.So let me reassure you that it is possible and if you can get as much help as possible from people around you then that would make it easier on yourself.But I understand that ideally it would be easier on yourself if you could be as well as possible before starting a family.Your flare will not last forever though so Iam sure that you will get better days back again soon.How long have you been taking the new antidepressant for now?You sound like such a lovely and caring and giving person and maybe it's time for some help yourself.How much help and support do you get yourself?I used to work as a nurse in a hospice and could no longer work due to ill health so I had to leave my job which was hard as I've always worked as a nurse and I was the only breadwinner of my family.I did get better a year later and tried to work in a school as a health officer but only lasted 3 months and that was 7 years ago now.Its been a great loss not being able to work and provide for my boys but Iam hoping that one day I will be well enough again to maybe do a little bit of some type of work,but not nursing as I couldn't manage that.And now I have lost my train of thought as fibro fog is so bad :( so I will have to finish my post as Iam really struggling :( so Iam sending you lots and lots of wonderful healing and soft cuddly thoughts and I really do hope that you get some relief from your symptoms soon xxx

  • Morning Zosie

    Its ok to get things off your chest here as there are many of us that will listen to you and I'm sorry about your flare up.

    Stress is a nasty illness that a lot of people do not recognise to start with but when you have a condition like ours which gets severely affected by it its even worse. You are right about telling people what they want to hear rather than the truth but like you say will they listen if you do tell them the truth?

    From what you have written I am not surprised that you are stressed with all those worries on your shoulders and I give you big soft fluffie cuddles ((((ZOSIE))))

    I mirror gins by saying get a cuppa and find somewhere comfortable and relax......... breathe deeply...........and again :)

    It is normal to grieve the loss of independence and although it hurts it is an important process in order for us to move on and become stronger as a result. It took so long for me to get a proper diagnosis that I'd already lost all that but I've managed to pull myself up in order to carry on. Changes have to happen and if you are concerned about your health detiorating please see your GP and discuss what you have here with us if for nothing else but peace of mind.

    Remember that when under stress you need to be having two half hour relaxation sessions a day at least to help your body repair and heal and to regain some energy and strength. Guided imagery is a good technique to use Zosie and if you check my posts there are a couple in there you might like to try. Another good form of therapy is talking to someone I couldn't survive without my listening ear she's helped me so much :)

    Anyhoo! like you say its difficult to read when there's so much so apologies for that Zosie :O and I'll leave by mirroring gins again by saying please join in the panto fun tomorrow for the smiles and giggles :)

    Always here to have a cuppa and a chat if you'd like to

    positive and healing fluffies heading your way :)

    :) xxxzebxxx :)

  • Hi dear Zosie, I'm so sorry that you are having such a rough time, and you have every right to come here and have a rant - you know we will all understand :-) I agree totally with what everyone else has said the one thing I would ask though is have you been referred to a pain management team ? They can be very helpful firstly with getting your meds right, but also some run courses to try and give us good coping mechanisms to handle fibro and also how to explain what we are going through to others. That may prove useful particularly to do with your work situation.

    I won't write more at the moment dear Zosie, as I know it can be hard to read long messages, but do feel free to message me if you need a shoulder or an ear !

    Sending lots of positive healing vibes your way and giving you a very rarified Foggy hug (((Zosie )))

    Foggy x

  • Hi everyone, thanks for your support. I had a call with occ health this morning who are recommending more/ total home working but I'm feeling so bad I've made a doctors appointment for Monday. I'm going to ask him to sign me off for a week or two.

    I've not heard of pain management clinics. What are they?

    I've been crying since I woke up at 6 this morning. I can't seem to stop. Has anyone found starting new meds can do that?


  • Hi Zosie so sorry you having such a bad time, When I started get bed flares I cried a lot, I think it was from frustration and also trying to come to terms with an illness I didn't understand and also I felt I had lost some of my independence and sometimes I didn't know why I cried I just did, I hope this will pass quickly for you

    I agree with what ever one else has said, speak to your GP on Monday about a referral to a pain clinic.

    There are around 300 pain clinics in the UK. Most are in hospitals and have teams of staff from different medical areas, including occupational therapists, psychologists, doctors, nurses and physiotherapists. They all work together to help people with pain.

    Pain clinics vary but usually offer a variety of treatments aimed at relieving long term pain, such as painkilling drugs; injections; hypnotherapy and acupuncture.

    You will need to be referred to a pain clinic by your GP or hospital consultant.

    Pain management programmes

    Pain management programmes are a series of sessions, for groups of 6-8, aimed at teaching you how to live with your pain. Instead of treating your pain, you learn to cope with it and, research shows, can expect to enjoy a better quality of life, sleep and mobility afterwards.

    Some hospital pain clinics offer pain management programmes, and some are held within GP surgeries.

    As with pain clinics, you will need a referral to join a pain management programme from a GP or hospital specialist.

    Hope this helps

    Sending you lots of gentle hugs

    Mazz xxxx

  • Hi there Zosie, I too mirror everything that gins and zeb have written, I too have been there, quite few years ago mind, worrying isn't going to alter our complaint it won't make it go away so the best thing todo is to go with the flow and accept it, everything works it self out, I'm sure something will turn up if you have to give up work, it usually does, your well being is far more important, I think our meds are to blame for the way we feel sometimes, but it's a vicsouse circle if we don't take meds we are in so much pain and our body can't cope with the pain and then extremely high blood pressure kicks in, this I know as it happened to me, and was explained to me by the hosp when I had to go in for this reason, you are a very loving thoughtful person Zosie so start saving some of that for your self, when u have to rest you rest, pace yourself I'm sure money wise things will work out they usually do, we are all here for you Zosie, don't ever apologise for moaning or ranting on, like gins you can pm me if would like to talk, take great care Zosie you are in my thoughts, and sending you a huge soft gentle hug.....((((((((((Zosie)))))))) ......Dee xxx

  • Thank you for explaining that Mazz.

    I have arranged some counselling sessions as I think I need to talk this through with someone. I've had so much going on this year with my family. I didn't realise how upset I still am about it until I spoke to the counselling service this morning for a referral and had an initial consultation. It all came pouring out.

    Talking to a trained counsellor is very different to talking to friends or family. They are much more analytical and really get to the underlying feeling but respectfully and without judgement. If anyone reading this has been contemplating it, go for it. If you don't like it you can always stop.

    When I go I the docs I'll ask about pain clinics too.

    You have all been so sweet and your hugs and kind words mean a lot to me. Thank you for taking the time to answer my post.


  • No one is going to remember how clean your house was but they will remember how

    they felt when they were around you...so let some things go...do what you have to do..and maybe a sister or a friend can help you do once a month cleaning or something like that...

    Make every calorie count big time...eat the highest proteins you can find and then take your medicines with some fruit..or something citrusy, acidity like a few gulps of orange juice so

    it all gets absorbed well..Take your Vitamin D two hours apart from your iron..Did you

    have your B12 checked as well? B12 deficiency robs you of sleep, energy, and concentration...

    keep with the counseling..it will help for you to carve time out for yourself. I wish that I could

    zip over to help you out a little..I feel a lot of guilt because outside of some back pain and shoulder pain which is mostly mild, I don't have much that the rest of you have just yet...

    Give yourself a break..it's okay to say that you need to take today to just think and make decisions..xxxx Karen

  • Hey Karen,

    I've let go of housework a while ago! I think my bathrooms haven't been cleaned in more than two weeks!

    My b12 was healthy as was my feratin (the level was 34) but my haemoglobin was a bit low at 11.8 which I think is weird if my iron, b12 and folate are all healthy...can anyone explain how that works to me??

    I've been taking my iron with the vitamin d...I didn't realise they couldn't be mixed - why is that? I know you and any others on here are medically trained so I appreciate your insights :)

    Don't feel guilty Karen...I joined the site in Aug and rarely posted as I didn't think I was 'bad' enough compared to some people...maybe like you I worried I would be a phoney...but we are not. Everyone's pain is valid and everyone has the space on this forum to share and care. I love to see how many times you answer people's blogs...it takes energy to do that and shows you have a big heart xoxoxo

  • hi, my heart goes out to you, may I suggest that you show the post you have written to the people closest to you, they will perhaps begin to have a better understanding of how you feel and how this awful illness affects you and how hard you are working to stop it affecting your relationships with the people closest to you. perhaps it may also help to let them read the replies you have had. I could not manage your life so I really respect you but please be careful things don't start to fall down around you.

    Please look after yourself xxxxxxxxxxxxx

  • Thank you Pennie, that's a great idea :)

    I haven't seen you post on here before, are you new? :)

  • Hi zoisie,how are you feeling today?xxx

  • Morning Haribo,

    I feel a bit drained after yesterday's roller coaster of emotions. But I feel better now that I have taken some steps to help myself. I think taking a week or two off work will really help.

    Thanks for thinking of me. How are you doing today?


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