?diagnosis

HI and happy new year.

I haven't yet been 'labelled' as having fibro, I'm still having tests to eliminate other illnesses but it has been mentioned more than once.

Looking at symptoms, I am akin to most symptoms but don't 'flare' I am in constant pain in my feet and legs which don't seem to want to walk or stand. My neck shoulders and arms are weak and painful, my right elbow just ceases up. I wake in the night with aching either in my ribs, lower back or pelvis and am just exhausted having a shower.

I'very been reading about exercise but I can't even hoover so not sure i would be able to do any of it advised.

Just wondered if this is a familiar pattern. Any advise is appreciated as I am off sick from work at the moment and am struggling to see me ever returning.

Many thanks x

15 Replies

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  • Hi Julieanne45 and welcome to our friendly fibro forum where you can get advice, support, help and information. Have you seen our Mother Site fmauk.org ?

    Here you will find a wealth of information including guides and links.

    If you look to the right in Related Posts you will see you are not alone in waiting for a "proper" diagnosis.

    Getting a fibro diagnosis often takes time and many tests to eliminate other conditions and unfortunately, even within this community, many members differ in their symptoms so it is not easy.

    If you loook to the right in blue under Pinned Posts you will see instructions on how to get the best out of this site. Hope to see you around the forum.

    X

  • Thank you x

    I am struggling to find the link under pinned posts. Is this maybe because I am using my mobilr not a computer to view the site? X

  • Hi Julieanne45 welcome to our friendly site can I just ask why you say "labelled" with fibromyalgia that's the 1st time I have seen this word used were fibro is diagnosed or awaiting to be diagnosed I can understand were you say you in pain as I can't hoover either also taking a shower a quick one can now take me a hour even longer drying hair etc I've been advised on this site and by gp to pace myself in truth I find that very hard to do until I've done to much and I tell myself off for not pacing myself I suppose it will come in time I hope you get the results from your test and you can then get the help you need I wish you good luck for 2017 and send you gentle hugs

    Bam xx

  • Thank you Bambansnan.

    I used 'labelled' because that's what my neurologist said. His words were 'I don't want you labelled as having fibromyalgia if there is another cause for your symptoms ' I hope it hasn't caused anyou offence x

    I have had problems with my head for 4 years now which has been diagnosed as a cerebellar tonsillar decent. The pains in my body started 2 years ago and they aren't sure if they are linked or seperate conditions. I was referred, eventually, to a rheumatologist/pain clinic back in September but as there are no appointments I cannot get seen.

    So frustrating as it looks like i'my going to lose my job now too although there's no wayI could work at the moment anyway.

    Do you work? X

  • Hi Julieanne45 it was just a word I hadn't used or certainly not off my gp etc I'm gutted you are going through so much answer to your question I've been off work on the sick since April 15 I'm now going through the process of being finished up but that's another story I can't understand why you can't get seen have they told you this is there a long waiting list they can't leave you like this have you been back to gp or chased up the hospital for appointment this is your next step good luck with everything

  • Thank you for your reply Bambansnan. I have been to my GP to see if he could expedite it but he said he couldn't.

    My neurologist said he thought most of my body pains were down to the gabapentine. , I was on 1200mg tds, he actually started me on these for my body pains but he told me i'd got to stop them to be sure. I've had no pain relief now since just before Xmas and go back see him on the 17th January. So my GP said untill then he won't expedite it.

    Hope you go on ok regards work. It's so hard, the added pressure of trying to get to work and claiming sick . X

  • Hi there, it's interesting you say this about the gabapentin as I'm wondering whether gabapentin has caused a spike in my symptoms. I was putting it down to environmental causes but yesterday realised the dates of me starting to take it and then the date of my dosage being increased from 900 to 1200 mg roughly correspond with me feeling much much worse. Perhaps there's some truth in it after all. I too am awaiting to be seen by a rheumatologist and I don't think my GP has even made the referral yet so I'll be back in to speak to him again this week. I also had the talk from a pain specialist about not wanting me to be labelled. it was very frustrating to say the least! I do hope you get some answers soon x

  • Thank you miss _em I have to say i've been worse since stopping the gabadentin but it does sound too coincidental for your symptoms to of gotten worse since the increase. It was suggested to me that I just reduce mine down to the 900mgs tds as apparently you can plateau then go in to side effect mode. I hope you get your dosage sorted. X

  • Labelled, what a horrible term to use from medical professionals. πŸ€•πŸ€’πŸ˜΄πŸ˜± πŸ‘©πŸ»β€βš•οΈπŸ‘¨πŸ»β€βš•οΈπŸ’ŠπŸ’‰πŸ›ŒπŸ’”

  • I agree Robbie138 stigmatised it's wrong in my eyes

    Love bam xxx

  • Hi Julieanne45 welcome to our wonderful forum ☺ I'm sure you will come to find the forum invaluable in chatting to others who are going through the same experience as you, talking to others at different stages of their lives with Fibro and learning from their experiences.

    It does help with the whole process and I wish I had found the site years ago. I have had Fibro for nearly 30 yrs and I'm still learning about it, like we all are.

    I have Fibromyalgia and Polymyalgia/Arthritis and I'm in constant pain, although it is sometimes worse than others. Everyone is different and there are stages of Fibromyalgia, everyone manages pain differently and it is very hard to say what is normal or not with fibromyalgia. Maybe a good idea to keep a diary of your pain & how it's effecting you each day, then you can show Rheumatologist if you get a referal.

    I look forward to chatting with you on the forum

    Peace, luv n light

    Jan x

  • Thank you janet28. I'm already loving the fact that I can talk to people who understand and have the same symptoms and problems as me. I'm sure I will find it a real help in the future.

    You sound like you have more than enough going on. You have pain from so many origins

    Thank you again

    Julie x

  • Hi Julieanne45

    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 your are suffering and struggling and I sincerely hope that you can find some resolution and relief to these issues.

    My personal experience of Fibro is daily pain, fatigue, poor mobility and occasional brain fog. It is quite debilitating and exhausting to say the least. I get over all pain, and not just restricted to a few areas, so it can travel and spread all over my body.

    I want to genuinely wish you all the best of luck my friend, and please take care of yourself.

    All my hopes and dreams for you

    Ken

  • Thank you TheAuthor

    You have more or less summed up my symptoms in you reply.

    Life is so hard with this illness and no one understands unless they have it. I get people telling me they can be fine for months then in bed for a few weeks but mine is constant, others say oh i've got that but they're carrying on with life as normal. This is what got me querying if I could actually have this but since reading on here how everyone is different I think I most probably have.

    Many thanks

    Julie

  • Good luck my friend.

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