Hello im New to the site

11 minutes agoRow73

Hi I've just been told they think I have fibromyalgia too so I've tests and assessments ahead of me. I also suffer with agoraphobia so thankfully they are doing it all at home, it's been the worse couple years being in constant pain and now ove the last couple months I'm having major memory issues, I've even set fire to bedding that was on the cooker that i always do when taking out the washing machine but i forgot to turn it off it has made me very upset and worried ive started romput up check lists to remind me to do things i never had a problem before and I'm scared about the future if it's going to be worse or not will I forget good memories or will I forget people, all this we think was triggered by an accident I had a couple years ago falling down my pub stairs and fractured my tail bone my doctor feels its caused a trigger to other problems so i decided to join here to be able to talk about it with other sufferes I do keep myself shut away as much as possible I'm embarrassed of who I am becasue I was so different outgoing fun hard working and always well groomed now imstruggle to get dressedmmost days

Does anyone else have these problems I feel so alone right now I dont tell my family everything because I dont want them to worry but i know im leting them down because I can't do all the thing I used to do for them all

29 Replies

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  • I definitely have days where it's a struggle to get dressed and look okay to leave the house. Just the thought of getting showered and dressed and all ready to go out sounds like too much to do and I stay in lounging clothes or jammies as long as possible. I hope no one comes to the door but usually they do so I make sure i'm decent even though I'm not dressed for going anywhere. I don't shower every day anymore. I make sure I don't get dirty every day so I don't need to shower.

    I haven't put any bedding in a cooker yet. I'll stick to putting it in the washing machine. So...you're not alone. I face each day and do the best I can with what God gives me. I just lost my husband to cancer and I have so many things to decide but I have lots of help right now. I'm kind of numb but I know the reality will penetrate when all of the people aren't around and then I'll really feel the loneliness.

    So we both will be letting our families down by missing a birthday here or there and not doing things for others but we will do the best we can. Let's make sure we see our Drs. when we're supposed to so we can be the best functioning that we can. We both need to be monitored for depression and going to the right Dr. for that is important for us. If we do that, we should improve over time and become more normal and participate more in family activities just like we'd like to, don't you think? Best wishes to you and your good health!

  • THANKYOU for the reply

    Do u suffer with agoraphobia as well as fibro I think now that im going to be getting the help i need and not gonna just be given strong painkiller to try and dull the pain which it does to a small degree but not anywhere near as much as it did a couple of years ago things will start to get better and be more Bareable and maybe i can start to accept what I have and understand it

    im so sorry to hear about your loss i have lost very close family to cancer I do hope that you have all the support u need xxx and now we have this site,to be able to support each other which is good

    I can't get in and out my bath so the assessment at home I'm having should help me get the equipment and help i need my headaches are getting alot worse these days too ive not suffered as much as now with those and nothing seems to get rid of it completely, but I'm so glad I now have some answers to what has been wrong with me all this time. my Dr has put me forward for so much help I'm hoping it will make a huge difference to my daily life i feel very restricted atm, I think now I'm doing a memory book and keeping a diary it should help me not forget so much

    I do hope if you feel lonely you will contact any of us on here for a little support its not easy feeling so alone I struggle with loneliness all the time so i am hoping talking on her will help me too

    Take care of yourself and I hope tomorrow morning won't be a painful one xx

  • Hi to you both, SueSz, and Row73,

    welcome to our friendly, caring and sharing forum.

    Reading through both of your posts, I felt such empathy for both of you, and you both have shown that even in the face of adversity, there is still that spark of courage to move forward to hopefully better times. Which I sincerely hope won't take too long in coming.

    This is really a great forum for meeting people who truly understand "just where your at" be it happy, sad, in pain, or feeling a bit better.

    Here is a link to our mother site, fmauk.org where you will find lots of info about Fibro and lots of other interesting stuff.

    Since it's the end of rather a long and tiring day, I will finish off by wishing you both better times ahead, and to reassure you that you've come to the right place to meet people who really understand what it's like to live with Fibromyalgia.

    Take care.

    GP. 💕

  • Hi SueSz,

    I'm so sorry for your loss, it will be very hard to deal wit the loss emotionally just now, but more so as you said ,when all your supoort just now starts trailing away, big hugs & love 💜 xx

  • Thank you so much.

  • Reach out to those that have said " if you need anything", they really mean it, just don't know what to do . Ask to go to lunch, movie, etc. if you have a hobby, join groups . Stay as busy as you can .

  • Hi SueSz

    I am so genuinely sorry to read that you have just lost your husband and I would like to offer you my deepest and sincerest condolences.

    All my hopes and dreams for you

    Ken x

  • Thank you very much.

  • Life with Fibro is tough but many others suffer more.

    Having friends and family to support you is necessary!

  • Hello and welcome to the forum. As I read your post with a few exceptions I would have thought I was reading my journal! The agoraphobia just happened to me in the past 2 yrs.It can cause problems as I'm already depressed if I could bring myself to go out it would help..I truly believe it.but I can't not even with meds. for it.I go ONLY when I have to and hate it then.ITake care and know you are not alone .Peck😊

  • I used to be so outgoing and would hardly ever be at home but after my fall and having the injury then in the same month I lost my first granddaughter on the day she was born and then a few months later I lost my job and home that went with that job I do think alot of the agoraphobia and depression came from that I ended up burying my granddaughter then living in my car or a caravan it was so much to try and handle at once I stayed strong for my beautiful daughter for many many months and when she finally a year later became pregnant again she seemed to be able to focus on other things and slowly became the young woman she was before. I think it was then it all seemed to hit me and I very quickly shut myself away from everything my back kept getting worse and before I'm knew it i had so much pain all over my body along with so many other issues thst just kept coming one by one. I now have a beautiful grandson and my oldest son and partner are expecting their first son in April, I dont get to see them as much as I used to because I live a little way from them and they don't get to be able to visit due to having their own busy lives, the agoraphobia means I miss alot and they all are so understanding about that. I'm blessed to have such wonderful children and I want to beat this but it's just so hard to do I try to arrange to leave the house and the nerves kick in I shake I get so anxious and sometimes I do actually vomit with the fear of stepping out thst door. .. I think they understand so well and they always say to me don't punish yourself so much mum we come to you we have the video chats everyday we talk on the phone, we know your there for us always

    But i do feel i let them down I could be such a better mum and nana if only I could fight harder but the fibro now makes me so tired and worn out so often i dont think ive told them about the fibro because I don't want them to feel like they have to make so much time out of their own young busy lives to care for me i want them to enjoy life not spend it looking after mum all the time it would make me so unhappy

  • Row welcome to this Site. I do not know about acrophobia! But I have had Fibromyalgia & Spinal problems for 24 years. All I know is that I feel Wonderful Support from this Site. Also enjoying Sharing my thoughts & sharing Jokes etc. All lifts are Spirits & is really beneficial to All of Us. Will enjoying chatting more again. But sending you gentle Hugs do Take Care. Jan. XX

  • Hi Row 73, welcome to the site, you will get amazing information & support on here. I'm so sorry your having these difficulties just now, my advice is tell the family as you will need the emotional, physical help & support, fortunately I've not done anything that could be a danger to myself like putting washing on a hot cooker, you need to let people aware that's happened as it could happen again, i also suggest you get a new routine where you don't put washing on the cooker whether it's on or off, i know you have your agrophobia but try with a family member even to just cross the door walk to the gate & back a few times a week then build up a little distance, the fresh air will help you in your general health aswell as your mental health remember lack of oxygen affects memory, wishing you the very best & improved health 💜 xx

  • Thanks honor I think I'm going to try stepping outside my gate a little xx

  • Row73, Good for you, it will make a big difference to you & will give you such an emotional uplift you'll want to make it a daily routine Go Row73 Go lol, I'll be behind you supporting your every step take care Love H xx

  • Hi Row73

    I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I am so genuinely sorry to read of how you are suffering and struggling and I sincerely hope that you can find the answers that you are looking for.

    I was wondering how you felt about counselling? As your GP may be able to give you a referral for this? It is possible that a counsellor could come to your home to start off with? I want to genuinely wish you all the best of luck, and please take care of yourself.

    All my hopes and dreams for you

    Ken

    PS. I also wanted to say that if you lock your post to the forum you are more likely to get more replies. I have pasted you a link below all about locking posts:

    healthunlocked.com/fibromya...

  • THANKYOU not sure what it means to lock your post but I'll go on the link now x

  • Row73,

    No, I don't have agoraphobia. I'm fortunate. I have GAD and take benzos which means my memory is affected somewhat like yours. I can't remember all kinds of things. I'm glad you're making records of things to help your memory.

    I'm sorry to hear about your headaches and pain not getting under control. I'm glad you're getting answers and that you'll be getting help through your Dr. acting for you. I hope you get lots of changes that make your life flow more smoothly. I also hope you try to get outside a little bit here and there for some fresh air. Just what you can tolerate.

    It saddens me to hear you struggle with loneliness. At least you can come here to contact other people. I may have the same problem down the road, but I hope not.

    I wish you the very best in health and wellness and I'll remember you in my prayers.

  • SueSz, can I ask what GAD is? sorry can't work out what it could possibly be xx

  • Morning Honor.

    I have just found what GAD means. It stands for Generalised Anxiety Disorder.

    Hows you today, Wellish i hope. :)

  • Good afternoon Mayrose, Thanks for that, I hate not kniwing abbreviations, I am as good as it gets thanks for asking, how are you? I got my B12 jag this morning so a wee energy boost so catch up on a bit of housework today, still having bother with benefit appeal, had it on 16th feb it was adjourned for further medical evidence, so I go back 12th April, I'm appealing decision that Atos declared me fit for work! Could di without the stress of it all, but hey ho it happens to us all xx

  • Thanks suesz,

    I hope your feeling well today and how are you coping with things xx

  • I've been coping very well because I've had tremendous support from family, neighbors and friends. My oldest son and his wife leave tomorrow and I'm trying to not let that affect me too much. But it's scary. Having people around provides a secure feeling and I have to learn how to cope without them all around. I'll still have 2 sons around to varying degrees so I should be okay for awhile. Thank you for asking.

    How are you doing now? Where is your pain level? Are you still struggling to get up and dressed each day?

  • Im having more days in my lounge wear than i am getting dressed because i struggle getting my trousers off and then new ones on again especially when I have the days were just touching my skin is so painful my inner thighs have been the worst lately as with my upper arms near my shoulders trying to get dressed causes me so much discomfort I stay in my lounge clothes but it also makes me feel down because the days i can get dressed and maybe even put my hair up and a little make-up I feel so much better in myself but i find the pain killers just don't take the pain away completely which gets so depressing I think sometimes why am I bothering to take any tablets when they don't seem to be helping ya know xx

    How are you doing today i hope its a good day for you I say a little prayer for u when I pray for my grandson and my children and my little granddaughter in heaven i ask for u to have a good day xxx

  • I'm so sorry to hear how just touching those certain areas of your skin causes such pain. Can you get your Dr. to try some other type of drug to relieve the pain? I think it's well worth a search, if you haven't already, to try all kinds of pain relievers until something really works well. Meanwhile, I don't blame you a bit if you stay in lounge wear. That sounds like the best choice when you're having such pain. It makes good sense.

    Today is a good day. I so appreciate your prayers! They are the best gift of all...a request to our all powerful and loving God! Nothing is better than that, so I thank you and am enjoying the results! I'll include your children and grandson when I pray for you now that I know about them.

    It seems that I've done so much grieving prior to my husband's death that I don't have much to grieve about right now. I hope this remains true, but only time will tell.

  • You should tell your family, they need to know! You need a support system . It will help them understand even more why you are not able to participate in different activities. 😘

  • I'm so sorry to read your post but you are not alone I found this site so helpful and we understand your daily struggles . Like you I was a lively outgoing person but I certainly not that person anymore. I have to work so my day consists of getting up going to work hating every moment of that feeling so tired I can't function properly coming home having dinner going to bed x5 days a week . I've lost most of my friends and sit indoors on my own most nights fibro had taken away my spirit and my energy !!!!

    I have to say having to work has forced me to get out I have to get dressed and face the world and sometimes it is a blessing don't give in ... Don't let it beat you I know sometimes it is impossible to fight back but fight we all still have it in us and there is a world out there frightening as it maybe but I know from experience sitting indoors doing nothing is not going to help you mentally or physically . My consultant stressed to me with fibro you have to keep going and that's what I'd like to stress to all my fibro sufferers don't give in X

  • I think if I didn't have the agoraphobia I would be trying to get out and about alot more but it does restrict my life i just can't seem to beat it at the moment but when I do and I will I will definitely get back to working doing what I love and has been my passion for many years hairdressing and beauty I keep loooking at a new botox and derma filler course I'd love to be able to get on with i hate myself for having the agoraphobia I really do

  • It was so warming to be able to read all of your posts thankyou so much everyone I feel today like I can finally talk to someone and they understand what is happening to me xxx I'm so very grateful to you all its made a very painful fibro day a little less depressing and I've not had that small lift in a long time I'm glad I joined

    THANKYOU everyone

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