Fed up & fibro?

Good afternoon to everyone, I am really sorry in advance for this post but I just needed a bit of understanding from somewhere. I don't know why I am like this its not like me, I am emotional full of pain in my ankles and feet because I have overdone it and its making me really down. The story goes - I have been really busy this week trying to get food in, presents etc & I was invited to go to Manchester to a works Christmas event starting at the Art Gallery I caught the train and walked to the gallery & was walking all afternoon. I knew I was tired before I went and then the following day supermarket etc by the time I had finished shopping I could hardly walk and I am still very bad today. I have been diagnosed with Fibromyalgia, Osteoarthritis of the Knees and Hashimoto's thyroid issues. But my ankles have never felt like this they are burning and aching even when I am sat down.

It is the feeling of hopelessness of everything I try to do something gets me whether its blood pressure, eye problems, wonky blood results, knee pain, fatigue or something else that is getting to me. I was always so very active and trying to get so much done in a day and now it is like I am an old lady (54) as I have to say no to things all the time. I am so sorry for having a rant and moan just so emotional and there never seems anyone who completely understands. My partner is fabulous but I live just with my son, who is not really that helpful or understanding of it. You feel that people think you are a hypochondriac when you say you are not well again and can't do something that is the worst feeling.

Castlepoint

32 Replies

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  • I am sure a lot of the members will empathise with your experience trying not to let people down when really your health should stop you. On the understanding I am quite relieved when there is not complete understanding because the only complete understanding comes from the same experiences which I would not wish on anyone.

    Wishing you peace, pain relief and some joy of your own.

  • You are most certainly not alone, I often come to the forum just to browse through, everyone understands, sometimes you have to put your needs first. xx

  • Thankyou xxx

  • Oh Bless you!! I soooo understand too! I'm also 54 going on 80!!! I was very active, and could not cram any more into a day than I did. But now a couple of hours of shopping in my buggy, with my daughter to help. Now laid up in bed in agony!! So, you come on and have a rant or moan, you have to lift the pressure cooker lid off.

    Take care and hope the day gets better for you. (((Gentle hugs)))

  • Aww thankyou Lizzyyear! It is lovely that I can have the knowledge that there are others in the same boat, not that I wish it on anyone though! You are so kind

    Xxxx

  • Hi I'm a similar age and feel the same even an hr out in scooter and I'm worn out now.

    I'm struggling finding sitting g down things to occupy me and keep me sane lol I've done loads of craft things now fed up with all of them.

    everywhere hurts or conks out my hands etc I wrote some Christmas cards and couldn't do anymore. I've tried to pace but it's so frustrating.

    My tree is up ... hooray

    it took me 3 days pacing myself

    Put few baubles then sat or lay down.

    What an old cronk I try to laugh but very sad inside.

    You're definitely not on your own with this

    Twinks x

  • I am lucky in that i do have an understanding family, but feel guilty that my hubby has to do so much with his own heath problems.

    It was for that reason i decided to leave my wheelchair at home, being battery it weighs a ton and i hate to see him struggle with it.

    So i toddled round the market and then lidle. Spent the afternoon sleeping in the bath

    the pain has eased but my left leg is still jumping around as though it has fleas.

    Ill go and tidy the kitchen and start on tea and hope it settles.

    Welcome to the forum so pleased to meet you.

    Hugs sue xx

  • Thankyou Sue & I hope you are feeling better soon too xx

  • Rant away and moan as much as you like it is better out than in. I think this time of year is stressful for everyone even if they are well but when you have this type of illness you can do without the extra pressures that come with the so called festive season. Pacing tends to go out of the window because all the events seem to come on top of one another so of course we do too much and then have to suffer for it. It is difficult for the more able bodied to understand I meet with a group of old school friends so we are all the same age and they are all remarkably fit and I can see very puzzled expressions on their faces when I explain I can't join them on some outings as I know I will only spoil it as I will not be able to keep up the pace. I try now to just pick out the ones I am capable of or really would like to go to and say no to the others as in the end I won;t enjoy any of them if i say yes to everything.

    I cut every corner I can at Christmas so it doesn't become too much of a burden but still find myself beating myself up that I cannot do what I used to do but we are all human but sometimes I think we forget that. I think it is harder if you have always been the type of person who is the "doer" in a relationship and has been capable of multitasking as an Olympic sport which I was. I am a bit like the useless partner in the three legged race that we use to do as kids.

    Try and be gentle with yourself and get as much rest as you can. A nice warm bath by candlelight with some epsom salts and some nice music and a glass of wine if drugs will allow might make you feel more relaxed and might ease the pain. Soft hugs for now.x

  • Thankyou so much rosewine, you have put into perspective my situation and yours too. It is so reassuring to know you are all out there & are trying to cope in the same or similar ways. I am really grateful for your support. Xxx

  • hi castle point,

    i quite understand your frustration with this. the problem is symptoms of fibromyalgia are very varied and any number of symptoms can come and go univited at anytime. The trick is to pace yourself. Dont try to do too much. try to be patient with yourself. You may feel quite restless at times but in pain/discomfort too, this can be exceptionally frustrating. be kind to yourself, slow down and take time for you. if you dont you will burn yourself out and crash. i too used to be very active and sporty, but ive had to learn to slow down, you could also delgate some chores to your son or partner to help you out.

  • Thankyou Jules12 - what you advise is always what I try to do but sometimes life gets in the way & you try to be "normal" for once. Then it comes back to bite you! I try so hard to ease back but it's a difficult one when you have always been very active. I am worried about my work next year as I am self employed & I can't push myself too hard but I need to work to live as I live on my own with my son. Thankyou so much for

    Your advice xx

  • Please do not apologise, it is what we are here for, and I can genuinely relate to what you have written! I get like this so much of the time now and it is horrid and quite frightening. I sincerely hope that you have a wonderful Christmas and can get to do at least some of the things that you really want to do.

    All my hopes and dreams for you

    Ken

  • Sorry you feel so bad, i cracked it this year, i have sat for hours in front of TV brousing the internet and did all my gifts shopping,, it was like Christmas for me opening them all as they arrived, will,do,same for food shop this week, i enjoyed it as no ques or exhaustion/pain, might help you in future. Have a lovely Christmas.

  • 2 minutes agoCastlepoint

    Thankyou for your kind reply, I think present shopping on the net is great if you know what you want, but if you're struggling with ideas I find it harder to get inspiration! I think you are right about food shopping as I do it all the time for my mum who is blind & 92. I think it's so hard trying to juggle looking after mum, work & my own stuff + trying to take it easy lol!

  • Hi there. I also know exactly what you are going through. I am 54 and get the feeling of is this what my life has become. I have been off work quite a while and feel I am letting everyone down. I feel so guilty but every time I try to do more I suffer for it. This site at least makes us realise that we are not on our own and we are not hypercondriacs. I have planned ahead as far as possible to try and make Christmas day doable. Fingers crossed that we start to feel different soon xx

  • Thankyou for your kind reply, I think present shopping on the net is great if you know what you want, but if you're struggling with ideas I find it harder to get inspiration! I think you are right about food shopping as I do it all the time for my mum who is blind & 92. I think it's so hard trying to juggle looking after mum, work & my own stuff + trying to take it easy lol!

    Wishing you a lovely Christmas & a Happy & Healthy New Year xx

  • So sorry I replied to you with the wrong reply for your response! Thankyou very much for your words of support & I truly understand you feelings of letting people down. Because we don't have really visible illness people think you are just making excuses, but here on this site we know that others understand our feelings and capabilities. I hope that your Christmas goes smoothly and that you have a peaceful & Happy New Year xx

  • You know what, after 20 years with this, and reckoning myself to be an expert on pacing etc by now - I STILL get days like these, so please don't apologise! Its really hard to stay positive and "glass half full" all of the time, and you're allowed to feel "half empty" some of the time. Just don't ever stay there because that really drags you down.

    I often feel very alone with this illness - I rarely bother my GP, but when I do go he's brilliant, but most of the time there's nobody whose job it is to support me (tried everything in the pain clinic armoury to no avail) and that's really hard. Times like these this forum is a lifesaver because everybody here understands and knows about down days.

    So think of yourself as a member of this very exclusive club, a place you can always come for love and understanding. And have the happiest Christmas you possibly can - if you've got love in your life you've got everything.

  • Aww thankyou Artyrosie, your response has brought tears to my eyes, what a lovely supportive reply to my bad day yesterday. I am the same as you always trying to be upbeat and positive as well as keeping my elderly mum the same. As she has had so many health issues over her life (92) I now think that she has had fibro all her life but never diagnosed. I had a bad blip last year when everything got to me & I was not working for 6 months with everything. Resigned from my job and now work for myself but struggling with health & earning enough to live on. But on the whole feel a lot more in control.

    Just for you to say that there is support out there is so kind & thoughtful & I too hopefully can support others out there. I too hope that you have a lovely Christmas and a Healthy & Happy New Year xx

    Castlepoint

  • Castle point, you are definitely not alone in your experiences! This is such a busy time of year and I have tried to fit in the Xmas school plays and Xmas fairs so the wee ones were not disappointed (I love going to see them), then shopping had to be done which couldn't be done online as I usually try to do. then my husband had a minor accident with his push bike and hurt his back which put him off work for a few days. What did I do? Tried to do so many things I know I'm not really able to do, nor am I supposed to do as per the consultants instructions! But he was lying on the floor so who else was going to help?

    Anyway-the result? Joints all protesting and interestingly my feet are so sore I could hardly walk, with burning pain in feet and ankles. That was the unrest in thing I picked up in your post. I can't get any explanation for this pain or any way to relieve it, unless someone out there has a suggestion-if so, please help! I've tried warm water, pain creams etc ( with hubby having to apply cream as I can't reach my feet!) the only exercise I can do is swim but yesterday it was hard to do even that as my hip is getting sorer and moving my leg to swim was really sore. Fibro sucks!

    Sorry if I have hijacked your post and turned it into a rant of my own, but it's how I feel tonight!

    I hope you have a reasonably restful Xmas and don't overdo things -as if any of us would ever do that, ha ha! Xo

  • Thankyou Kerryjess I hope that you have a suitably festive and peaceful Christmas & a very hopeful & healthy new year xx

  • Hi Castlepoint,

    There really is no need to apologise, we all need to sound off from time to time. I am positive by nature and can identify totally with the thoughts and feelings you express. I think I actually went through a time of mourning for the life I used to have. Like you, I was active, juggling work and my two boys that I was bringing up single handed. I'm now 50 and have had to give up my work as I can no longer keep up physically due to the pain and fatigue. I think it would take a saint to remain positive 100% of the time. Let's face it, chronic pain is relentless and the reason I'm not sleeping now, 1.40am, is because my body is screaming with pain as I did my shopping at 7.30pm. I try to pace but certain tasks just have to be done and I had a willing volunteer in my eldest son who did all the lifting, bag packing etc for me. I've taken 19 minutes to type the last couple of sentences as my hands are also painful, I touch type so it's minimal movement really but still need to rest them after a few words. That said, I'm happy as the freezer, fridge and cupboards are now stocked and I have chosen things that will save me preparation time. Corner cutting is allowed, as is having a good moan to folk who understand :-)

    I hope that you feel better soon and can be as well as possible in time for a very Happy Christmas. Take good care of yourself and rest often.

    Gentle hugs, Ginny

  • Thankyou Ginny, you are right it helps so much to know there are others to talk to and we can support each other take care & happy Christmas & a peaceful New Year to you xxxx

  • You're welcome Castlepoint. I have found such support on this site in the short time I've been here. The psychological impact of any chronic pain condition is enormous and we often feel quite alone when the pain levels are high. I for one am aware of the strain it puts on my loved ones as they feel helpless to help me. I try to get on with it as much as possible but I go pale when the pain starts to build so they see it in my face and tell me to sit down or take over whatever it is that I'm doing. It takes time for them to adjust to our limitations too. It has been some journey but as usual I see the positives and know that the relationship I have with my mother and eldest son has gone to a whole other level. I have to communicate on a whole other level as they worry if they know something's wrong and I don't tell them. My partner also had fibromyalgia but reports that his isn't as bad, pain wise, as mine. It was a bitter-sweet thing I experienced when he got his diagnosis as I was so sorry that he would experience the pain and fatigue but knew that we would be able to identify with each other so much better as our empathy is 100%. I am lucky to have someone so close to me that is kind and never judgemental. He has never once criticised me if I have not been able to do the dishes or attend to other tasks in my home. He will come round to visit and after greeting me will go and see if there's anything I've not done that he feels up to doing. Having put those thoughts into words I realise how much he loves me as he will come round after work and doing his own chores and always have a smile even if there are things I have not done here. An angel amongst men. I have apologised in the past and he brushes it off telling me that it's not my fault and that I'm not well. That makes me feel amazing as the depth of caring is immense. I suppose I compare it to my youngest sons attitude, he has to be asked to do jobs around the house and his response if that of a teenager, a mumbled ok that sounds more like some sort of Neanderthal grunt and, at times, the rolling of the eyes. I get the feeling that he resents me or perhaps my disabilities as 'the old me' used to do so much without even a second thought....I didn't appreciate it at the time but am happy that I've experienced a time when my body didn't limit me in any way. Some aren't that fortunate.

    Oh, and the 'old me' would have started off this communication by wishing you and yours a very Happy Christmas. I seemed to have got carried away on a stream of thought and analysis and am aware that I'm smiling as I type. To know how much I'm loved and cared for by my nearest and dearest gives me such a good feeling. Even the attitude of my youngest son, although stressful at times, is coming from a sense of loss. I have noticed that many of his peer group are experiencing a similar need to rebel so if it wasn't me it would be someone or something else. I'm sure his attitude will fizzle out eventually, I often remind myself that he chose me to be narky with as he knows that my love is unconditional. I have told him that I don't like his behaviour at times but I will always love him.

    I am going to go and make some sausage rolls and fruit tartlets now as I didn't have the energy last night. I've cheated again here and am using, for the first time, shop bought pastry. Having naturally cool hands I have always made decent pastry but now even the action of rubbing in the fat to the flour generates such high pain levels that it's not worth it when I want to enjoy today. My partners folks are cooking dinner for us, they know that he's busy with work and that I'm limited and tire quickly. They really are so sweet and always have a warm welcome when we visit. They are both in their seventies and live life to the full, wonderful people.

    Take good care and enjoy the festivities. If you're struggling then delegate and save your energy for the fun things :-) Difficult I know when you're the one that is used to doing but it can be learnt. I think that the key is not to feel guilty that others are doing jobs. I cooked a rather large ham last night but having lifted it into the pan initially, realised that it was going to cause me too much pain to lift it again. I waited until my eldest came round and got him to follow my verbal instructions on the preparation and cooking of the ham so he did all the donkey work. When my boyfriend arrived he was able to get it out once cooked, my son had left by then. I find the thought I had rather funny, I thought that I have just cooked a ham remotely ha ha ha...without the use of a safety net, whilst perched on my perching stool in the kitchen. Humour often sees me through :-)

    Best get on with my baking or the hungry hoards will be waking and will want space to prepare breakfast only to find it filled with baking debris. I wish you wellness and delight this Christmas, Ginny

  • Loved your response and became enthralled with your plans for christmas! I can totally relate with your remote organisation - me and my youngest son have done this today with the addition of my eldest son loading the dishwasher whilst me & my youngest taking lunch to my 92 year old mum 20 miles away. It has been a day of military organisation & now I am really glad to be off duty! Not been able to sleep too well for the last few days as wanting everything to go right. Glad that the pressure is off & now I can relax & enjoy the break. I still have all the pans/ oven trays etc in the sink. But hey ho tomorrow will be the time lol!

    Take care to enjoy this time & thankyou for your lovely response x

    Castlepoint

  • It's a pleasure Castlepoint, I find it so therapeutic to put things into words and find common ground with other people. It's remarkable how many people have similar experiences and views and even more remarkable to find those with similar circumstances and frustrations. I love your reference to your day being one of 'military organisation', it is beautifully descriptive and one I can identify with. Sadly my youngest is still rebelling and there is dissension in the ranks, to the point that my eldest is not wanting to be in his brothers company. I know it will pass, eventually, but whilst his 17 yr old hormones are up it is proving a wee bit testing on the already fragile nerves.

    I compliment you on your organisation, it sounds as though you thought of everything and have more than earned your rest and relaxation. Dishes, oven trays and pans can wait, nobody died of an unwashed pot or a dusty mantle-piece....I have it on good authority that dull women have immaculate houses...we could never be called dull! hee hee. I hope you've been able to have a better sleep now the pressure is off and that you've fully enjoyed the festivities.

    Take good care and continue enjoying yourself,

    Ginny x

  • Aww thankyou Ginny, what a lovely reply you are so kind and thoughtful. I can relate to your family predicament as I too have 2 sons, who have always been quite distant from one another but - as you say it will pass! My sons are 25 & 23 & get on reasonably well now & sort of help each other out! My eldest is still at home, my youngest lives with his girlfriend so it is easier. Sometimes it takes the tiniest push from me to make them realise that they need to look out for each other as they have never been overly communicative with each other lol! (Boys!!!!!)

    I love you analogy of the dirty dishes!

    You have a lovely festive time too and I guess you need some TLC too!

    Take care Castlepoint x

  • Thanks for your supportive reply, there's real empathy in your words. As you say Boys!!!!!!! They were no trouble when they were younger but since testosterone kicked in the youngest has been so argumentative. My eldest is loving being independent although I still bale him out when he mismanages his budget. He prefers to visit when his brother isn't in and has told me that I'm getting what he used to have to endure when he lived at home. I know that the younger one is manipulative and can be sneaky but had no idea that he made his brothers life so stressful. I asked why he hadn't told me before and he said that he thought it was his problem. He is a real star and so kind hearted, bless him. He was protecting me from stress as he knows it aggravates the fibro.

    All these things work out in the end but for now I'm having to ride out the storm. My boyfriend is a great support and provides TLC in barrow loads. We help each other out and laugh lots. He seems to know how I am before I do, sounds weird but it's true. I am learning how to handle stress better and realise that some of it is self-created. I can decide what I will or won't give attention to and much of the time I can let things go that I have no control or say in. I used to be a person that completed all goals by the end of any given day. Now I have to plan less and cut myself more slack. I have accepted that how I was is not how I can be today, that doesn't mean I'm useless or defeatist. I am realistic and will pace my activities so that I can have the best quality of life possible. I am limited but that's ok as I am improving all the time :-)

    Enjoy your weekend and be kind to yourself,

    Ginny x

  • Hi there well Christmas night and haven't signed on for a few days and saw your post, you are not alone the way you describe your ankles i to get this and I'm 59 going on 90 well thats what it feels like.....

    Trouble is we all tend to push ourselves to much I was about to say at this time of year but lets be honest we do it to ourselves much more often than not, although we know the key is to space jobs with rest periods, trouble is my brain doesn't get it, it goes into overdrive when there is lots to do and forgets my body can't keep up. Just to say take care, rest up and remember not every day is the same gentle hugs :-)) sue

  • Thankyou Sue,

    The comments about your body not being able to keep up with your brain is soooo true!!! You are also right about every day we have to push ourselves somehow but it's even worse at this time of year. Because I look after my mum & she had no carer yesterday added to everything too- she wouldn't leave her house (20) miles away so I made the lunch then took mums to her. Came home opened prezzies a few glasses of wine & zzzzzz!!Bed! I hope you had a lovely day and gentle hugs to you too & thankyou so much for responding to my post.

    Castlepoint

  • Hi I too have to care for Mum she is 89 still in her own home but 50 mile away from us so its usually approx 4 phone calls a day LOL, my daughter bless her does the local things like helping with housework. although sadly she herself has been diagnosed with Fibro a couple of weeks ago. As for me Xmas day went quiet husband cooked lunch he's a chef by trade so that was nice till I got to the washing up......... All i had to do was make the trifle and wash up, oh and listen to Mum having a moan about xmas but all in all yes a lovely day thanks take care Sue x

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