New here and just wanted to say Hello and that it is a relief to read other peoples stories are similar to myself and that it isn’t in my head and I’m not on my own.
Does it get any easier? I thought i was coping with it all ok last month and pacing myself etc but this past week it feels like I have been wiped out and feeling extremely low and so exhausted. Still trying to get the professionals to confirm as they all say what i am experiencing is all part of Fibro so deal with it! How can i deal with it if they wont actually confirm it?!
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Peanut585
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Hello and welcome. The wonderful people on here are full of great advice and support. We all try to helo each other the best we can. I found just having people on here who understand what im going through a great help. Listen to your body and rest lots when it needs it. Take one day at a time. Xxx
Thank you, yes I can see that as reading through the posts and knowing others are going through or gone through similar to myself has gotten me through yesterday. Just wish work were understanding! I think for me it is trying to adjust from be able to plan things such as adventure holiday like I did in the past to not being able to clean the house gets to me such as this week it’s been a complete wipe out for me and I managed two days in work yesterday letter yesterday saying need to discuss the situation with me on Monday! So stressed about that now which won’t be helping the already bad week!
welcome, its a learning curve both for you and the doc's, and stress is something that really wont help you, something we all need to avoid, and easier said than done most times, but im sure you will get lots of great info/support here, and dont be scared of asking anything you may feel silly, we have all done it, and been glad to find out " im not losing my marbles"
Thank you jimborck, and I certainly agree with your comment about glad to find out ‘I’m not losing my marbles’ as I have certainly felt like that a lot! How long have you had Fibro? Or how long was it for you to get confirmation of it?
issues started about 8yrs ago, (but have other things as well) fibro confirmned about 2yrs back, it was a case of ruiling out somethings before getting diagnosed, have you seen rheumotology ? well worth getting an appointment with them
Yes I’ve seen rheumatologist and she said it sounds like Fibro and when I asked her to confirm that she said oh no I don’t like to label people! Gave me leaflets about Fibro and referred me to pain clinic where I attended pain management seminars been waiting for their physiotherapist appointment which has come through but I have to wait until August. Having issues with work and trying to explain to them when the professionals won’t confirm it is a losing battle and stressing me out! I called the doctors again Friday saying that something had to be done either confirm it or tell me what is wrong so they referring me a Fibro clinic
seeing rheumotology is a good thing, and they were right not to label you, as its a disease, fibro is such a tough thing to diagnose, its not like just getting a blood test, its a few things combined, pain management is a good step, it will help you manage daily life, somethings work well for some but not all, its finding out what works for you, stress is something you really need to try and avoid, while at clinic, see if they will give you a sick note/ sign you off for a period of time for work
Thank you for your reply and rheumatologist signed me back to my GP because she said there was nothing she could do as all the bloods and x rays i have had and she requested more too came back as normal and she said that unless there was an issue with any of the repeats that she requested then nothing more she can do. Yes the pain clinic management seminars were helping and trying to adjust life and way of thinking i think will take time. I was thinking that I may need to get back in touch with my GP so i think i may do that in the morning before work. It just frustrates me when they all keep saying yes it is all part of Fibro so deal with it but then no one will actually confirm that is what is wrong. So Friday i called my GP and explained that i am exhausted all the time and the pains are getting to me and all i keep getting told my the other doctors at my surgery is that it is part of Fibro so deal with it when no one will confirm it. So can someone please either confirm that is what i have or look into it more and find out what is wrong. So he now said that there is a Fibro clinic that he will refer me too. Sometimes it feels like the professionals are really interested in helping and would only go further when i kick off! I am that exhausted that i am on the sofa with 9month puppy lying next to me sleeping as she seems to be learning that there are days where i cant play and she just sleeps next to me then and my husband has gone out for work to do something and i have no idea when he will be back in and he has left the tv on his formula racing channel and i cant even motivate myself to get the remote to change the channel!
Sorry for the long ranting email. Sometimes i find it easier to do this way than in person as my husband tried to understand but i know he cant fully as he isn’t experiencing the exhaustion and the pains. He wont even cuddle me now unless i ask as he knows that hurts me sometimes too!
it's tough on our other halves as well, they can feel useless, as they dont know what to do to support us, nor want to hurt us, and dont really understand whats happening to their loved ones..
see what the clinic advises, maybe a change in meds will help, as im told, little steps will bring you a long way,
Thank you. Will see how the physio appointment in August goes and see what the referral to the Fibro clinic come through with whenever that happens. Hugs
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