Do any of you seem to have deteriorated, the longer you have fibro. As I seem so much worse now than I did a year ago?

Hi fellow fibro friends,

I was just wondering if any of you have kept deteriorating with your fibro. I am just so surprised how much worse I am than a year ago. I know some of it is down to a cold winter, but really am quite stund at how I am deteriorating. And this evening, I have had the most serious hit of fatigue I have ever had. Even too exhausted to sleep. Really has quite scared me.

Would love to hear other peoples views and experiences.

Thank you so much for reading this post.

Kind and gentle hugs to you all.

29 Replies

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  • I feel I am a lot worse than 12 months ago as you say weather don't help but I have had horrendous pain and cramp almost all the time and the swelling in my ankle feet and fingers is much worse everyday my fingers are stiff and swollen so I understand what your saying you get worse as time goes on x

  • Hi Lizzyear

    I sincerely hope that you are feeling as well as you possibly can be? I am so sorry to read that you have been suffering with your Fibro in this way and I sincerely hope that you can find some resolution and relief to your current issues.

    I think most of us have suffered more during this horrid weather. However, I always think if we start to have more pain, and more often, then we should always go and discuss this with our GP's. It is the only way to keep them up to speed with how our Fibro is going and maybe they can offer you some different medication?

    If all of us, when the weather changes and we start to feel ill more often, all rang our GP's over a few days. They would then have a data base to look back upon and think that there is something going off for all of us Fibro sufferers. They make start to listen to us more? Who knows? When people ring them on mass relating to a virus or a bug, then these things stand out. Hopefully we can do the same with our Fibro?

    I have pasted the FibroAction website link below in case you need any information from the site.

    fibroaction.org

    Please keep us all up to date with how you get on.

    All my hopes and dreams for you

    Ken x

  • Hi Ken,

    Congrats on becoming a Volunteer! I am under a lovely sympathetic and very knowledgeable GP, who is aware of how I am and is very involved in getting the correct meds. But even with all her help, I know I am definitely deteriorating. Thank you for you advice and comments.

    I hope you are feeling as well as you can be today.

  • Hi, I have deteriorated a lot since diagnosis 2 1/2 yrs ago and often wonder when/ if it will stop getting worse. For now I seem to have reached a level which seems to be "stable" for me and hope that this is now as bad as it gets, but each time a new flare comes, it is scary and wonder how much I will recover from it.

    Im afraid I don't know if it keeps getting worse or if it ever improves again, especially as we are all different in our experiences of Fibro, but you are not alone.

    Sending gentle hugs xxx

  • Hi, I have had fibromyalgia for over ten years now and I have continued to deteriorate more and more each passing year. I am currently on 11 different medications. I believe the key is moderation. For example I can seam to manage only one major task a day. Like if I have a doctors appt. I can do that but not the Doctor appt. and grocery shopping in the same day. I take a nap every afternoon...or at least try to. As I"m sure you know it is difficult for us to get sleep. It is difficult to try and limit the amount of work we do each day as life is most often very demanding on our bodies. I am 51 and my husband is in his mid 60"s and just does cart wheels around me. I don't know if you know this or if it will even help you but it"s worth a try. There is a medication that is specificly for fibro called Savella and is FDA approved for the treatment of fibro, where as Lyrica was orininally ment for the treatment of the "pins and needles" pain in the feet of diabetics. Lyrica causes weight gain and Savella does not. Lyrica is also now classified as a narcotic, how they came up with that is beyond me. Savella is not a narcotic. So any way, in my experiance with fibro it does not get any better as time goes by. We just have to learn that we can not continue to push ourselves and must take several time outs during the day and rest. Gentle hugs to you fibro friend, I pray you find some comfort in any fashion you can.

  • Thank you for taking the trouble to reply to my post. I have never heard of that medication, but will certainly look into it. I hope you have as good a day as you can.

  • Thank you for your reply. It's so helpful to hear other peoples experiences. I hope you have one of your goods day today. Gentle hugs.

  • Hi there I've deteriorated since I first had this but I think to my self it started when I was eleven and I'm now seventy two, so to be expected, each time I've had. Flare up it has gotten worse, but I say to myself there's nowt I can do about it except as ken says keep doctor up to speed with what's going on, so I take one day at a time and tell myself at least it isn't anything terminal like cancer, and for that I thank my lucky stars and the man above.... Sorry to hear you are feeling down, wishing you better sending you. Gentle hug and a handful of sunshine....Dee xx

  • Lovely advice Dee :) xx

  • Hi cookie,

    Thank you for your comments. I must agree I use that comment.

    'at least it's not terminal' a lot, when I can see my family are worried about me and the pain I am in. I am usually very positive, I just wondered if other people were experiencing things similar to me. It makes me sad that anyone else is going through the same, but, also comforting hearing the different coping mechanisms we all use. Thank you for gentle hugs and loving the sunshine!! :-))

  • Hi I agree with every one I have deteriorated over the years. I used to flare but I don't any longer. I used to have bad days and then maybe 1 or 2 good days. I am now in constant pain and just have bad days and worse days now :o(

  • Hi gracesgrandma,

    Sorry you are having such a bad time :-(

    Hopefully as the warmer weather comes you may get some respite from the pain. I assume from your name you are a grandma, don't you find the grandchildren bring much joy and happiness to your day. Brings me a bit of sunshine, even when it's not sunny!! And lots of laughter too!!

    Take care and hope today is one of your lesser pain days.:-))

  • Hi Lizzyear the Grandchildren help a lot. My son, his wife and their 2 children all live with me that said I wouldn't have it any other way. Today for some reason my body has decided to attack itself with hives. I haven't had them for over 20 years and as I have reduced my life in every capacity to cope with the Fibro, Agoraphobia and all the other delightful things that come along with those I cannot work out what has triggered them and am swelling up nicely as the day continues and trying to not lose total control. Apart from that all is good :o) lol. Hope you are having a better day than me xx

  • My worse time was 4 years after I had the first symptoms. Lowest point was my 5 year old son having to help me from bed to the bathroom as I could not get there on my own. when he was 10 I felt well enough to kick a football round the garden with him, he still remembers that day 16 years later. Poor kids did not have a 'normal' childhood but after having the condition for nearly 30 years it does come and go.

  • I don't know how long I've had fibro for because all they could say was a long time :o

    I have deteriorated a lot this last 3 years but I put it down to lack of physical therapies such as hydrotherapy and physiotherapy. I was unfortunate to be told years ago that they couldn't give such treatments in case they caused me damage as they didn't know what they were treating :( I believe this lack of treatment has caused most of my deterioration and am now having to use a wheelchair when I go out. We're all different and respond differently to everything so I can't say why or what would be the reason for anyone deteriorating as in my opinion there are a great number of factors to take into consideration.

    Have you expressed this concern with your GP at all? as it is important to keep your GP up to date. For instance a medication may need changing or the dosage altered, which only your GP can do. Your GP may be able to get you some help through further diagnostics or therapies.

    I wish you well and send some fluffies to help you regain some strength :)

    :) xxxsianxxx :)

  • Hi Everyone, now I am slightly worried. I am at a stage were the pain is manageable without medication other than Duloxetine but have only had this for about 3 - 4 years and only medicated since November last. I have a couple of good days and nights then 5 or 6 bad days and nights. Reading the comments from you all it looks like I can only get worse. If you don't mind I think I may just pretend that it won't happen to me and I will be the exception rather than the rule :) I hope you all have good days rather than bad and can keep smiling... Susan :)

  • Bless you susan :)

    There is nothing to suggest that what is happening to others will happen to you hunny but I can most certainly see your point!! :o

    We are all different and handle it differently, for instance, I have severe hyper-mobility alongside my fibro which causes a lot of issues too so its not just the fibro at work. Plus 20 yrs of managing pain, anxiety and depression without a diagnosis and all of which are contributing factors ;)

    I advocate positivity and relaxation methods to help keep things balanced and it sounds to me like you have embraced the positivity. Smiling is fantastic like laughing and I send you smiling giggling fluffies to help you spread the positive smiles :)

    :) xxxsianxxx :)

  • Thank you Sian, Smiling giggling fluffies are most welcome, especially after a bad night :) If there is 1 thing my life has taught me is to try where possible to stay positive, never give up and if all that fails laugh then bury your head :) How can I go wrong! You are also very right, no 2 people are the same and thank goodness.I am fairly new to the site and have found the advice and the funnies very educational, useful and probably why it works so well in keeping us all uplifted. So again many thanks ... Sending back a very warm hug Susan :) :)

  • Hey Lizzyear I no how you feel I was diagnosed with fibro 6 months ago my tablets dosage have increased from 10ml to 20 ml now I'm on 25 amitriptylines and 500 ml of naproxen and 10 ml codine phosphate plus other meds how are you coping? :-) Ros warm hugs

  • Hi Vixen49,

    I also seem to take an array of meds. I am on 40mg of Nortriptoleyne and Gaberpentin 300mg I take 3 of those tablets three times a day, plus paracetamol and tramadol and also Meptid. Scary how as before I had fibro I hated taking a tablet for anything!! I do hope you are having a better day today. I do feel we are quite similar in our fibro.Take care and thank you for replying to my post Ros.

  • hi there to all who suffer with fribro I hv found ta my pain is getting worst to it seems to be gettingalot f me to handle with its gone into most parts of my body even in the soles of my feet which makes it difficult to walk I myself hv to walk with a stick now even hv got a wheelchair incase I need it sleep well its about 2 hours tas it duc the pain is unbearable im on 50ml amitriptyline and strong painkillers to help with it its hard to cope duc smtimes how are u coping today glo100

  • After 20 years with this condition I can definitely say that I am gradually getting worse. My husband says that he sees year on year that I can do less than the year before. Now that might just be getting old, but there's no doubt there does seem to be a slow decline. I just deal with it since there's no alternative!

  • Yes, yes, yes!! I definitely feel my fibro has got worse. I get tired a lot quicker and I can't stand for very long without fear of falling! XX

  • Yea I defo am getting worse the longer I have it, does get u down, but u have to try to keep going though, each &every1 is different, but we all can relate to the pain which is a help, I find the cold weather the worse tbh, I'm a heat demon tbh, I'd do well in a super hot country, think if it was possible like win the lotto, I'd defo immigrate & hopefully this fibro would ease/maybe disappear how gr8 wud that be, ohhh sounds soo good, mmmm 3 2 1. Bk in the room again, yes it all how we cope/deal with this disease that matters, tbh, I've been prescribed a lot of different pain Meds through last few yrs & I really don't think anything helps it only takin it super easys, abit like a turtle pace, try not to stress of things beyond your control, keep talkin & keep ur family close. Hugs to all, sorry went on a bit of a ramble there hehehe:-) xx

  • I know that i have deteriorated over the last 14 years, but bearing that in mind, i also know that i will improve as the weather improves. I am able to do more in summer and do not feel as isolated as i am just now. Also i improve the more physio and exercise i am capable of doing, the less i move the worse my body gets re pain and stiffness. But, everyone is different, and i have had athritis since childhood which obviously has to be taken into account. Im sure over the next few months things will start to improve for you Lizzyear, good luck .

  • Definitely yes, and of course we are getting older and less able to cope with these things, but as you say it's not terminal just a pain in the a...e. Literally

  • Hi there im new to this site a reply to lizzie ive had fms for four yrs now I did work full time but had so much time of work that they finished me on medical grounds im on esa and last year I got Dla aswell but it wasnt easy my fms has gradually got worse where now I walk with a stick and I can oniy do that for 10mins very slowly because the muscles in my ankles become so painfull they sieze up fatigue hot sweats heart palpatations pain on sitting and standing to name just a few .

  • That's an awesome way to think about things Dee(cookie72)...I am the same, just get on with what I can and 'oh well' to what I can't...I have just adjusted my life to include things I can do and don't attempt the things I know for a fact I can't (so as not to heighten the depressive nature of this beast we have)...BUT getting back to the question asked by Lizzyear....yes I am progressively getting worse every year and especially after every flare up. Unfortunately it seems there isn't a good answer for your question but at least you know your not alone...gentle hugs Caz x

  • Thank you all so much for your posts, they made interesting, inspiring comments. Sorry I haven't replied individually, just haven't had the energy. But I really do appreciate the effort you guys have made to answer my post.

    Gentle hugs to you all. X

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