Hello from the Isle of Man

Hello everyone!

My name is JoJo and I have been a member of the NRAS forum for about 18 months but now I'm being told I have Fibromyalgia not RA, so I thought I'd better pop over here!

Still not entirely convinced that I have just Fibro by itself (although goodness knows that's hard enough to deal with). My symptoms started nearly 4 years ago now and was confined to my hands for the first two years, being stiff, swollen and painful. Then it went to my tailbone and I found sitting at work and typing damn near impossible. Then whatever it is I have just swept through my body like a wildfire! Now I can hardly walk any distance at all, even with a stick, I am constantly tired beyond belief. Cannot remember simple things, names or sometimes just random words escape me, so frustrating! I think the only part of me that doesn't hurt is my nose, oh and my eyelashes! Lol

I live on the Isle of Man which is a beautiful place but not so great when you need a specialist as I have been seen by a constant stream of different Rheumys, each one with a different opinion and diagnosis. One even told me I just had tennis elbow!

Anyway just wanted to say 'Hello' and hope everyone is not in too much pain today :-)

JoJo x

31 Replies

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  • Hi Lilac_lion

    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 sorry to read that you have also been diagnosed with Fibro, as it is an horrid illness at the best of times!

    I have pasted you a link below to our mother site, FibroAction, that has loads of useful Fibro information on it:

    fibroaction.org

    I genuinely look forward to bumping into you around the site, and we are a very friendly bunch on here, so please feel free to ask anything that you want?

    I have Arthritis as well as Fibro, and I have Spondilitis and Costachonditris, so it is always worth discussing things with your GP if you have any doubts whether it has to be one or the other?

    All my hopes and dreams for you

    Ken x

  • Many thanks Ken and pleased to meet you too! :-)

    Thank you for the link too, everything I know I about Fibro I have gleaned from the internet as neither my GP or Rheumatology Dept. have provided me with any literature. (I think each assume the other will!) So another (reliable) online source is very welcome to me.

  • Check out hypermobility syndrome just in case it's that. I had to diagnose myself, then get it agreed by a consultant. It's relatively unknown and often misdiagnosed.

  • Thanks rowantree, I'll look into that. I have heard of it but know very little about it.

  • Hi JoJo, am the same as you. Doc thinks I have RA yet my rheumatologist is drawing more to Fibromyalgia. I get my results a week Saturday. Am too in both forums which I haven't long joined. All confusing at the mo and in a lot of pain. We have family in the Isle of Man, lovely place xx

  • Hi Corsav7, it is a bit of a nightmare isn't it? Yes my GP was convinced it was RA but the rheumy's always ummed and ahhed over it until this last one (they're always locums, rarely get to see the head honcho) decided it was Fibro. My dad and several of his siblings had RA so there is a strong family history of it. To be honest I'm at the stage now where I don't care what it's called I just want some decent treatment and to start to feel better!

    The Isle of Man is a beautiful place to live but the medical facilities are somewhat lacking unfortunately, but I guess we can't have it all :-) x x

  • Hi JoJo, have you had any test such as MRI? What about blood tests such as ESR and CRP? Last questions, have you taken any DMARDs or anything for fibromyalgia?

  • Hello! Yes I had MRI's on my hands and my head (to rule out MS) there's no sign of joint damage which is a very good thing. My ESR and CRP are constantly raised but that's all I've been told, I have never been given actual numbers for them, which is annoying as I know a lot of people do have the numbers given to them. No DMARDS as such, I was on Celebrex as any other NSAIDS gave me terrible stomach problems but I have started to react to the Celebrex too now so they have taken it off me. I am now on Omeprazole, for stomach protection and Pregabalin for the Fibro. I also have co-codamal for pain relief. Have noticed a significant rise in joint pain since stopping the the Celebrex though.

  • If I were you, I would be chasing the actual numbers for ESR and CRP. They shouldn't be raised just for nothing! Even at 50 it shouldn't be raised. Asked to see different GP and have your blood explained to you and ask for numbers!!

  • Thanks for that, I will ask next time. I get the distinct impression that even though it's my body, blood test results etc. are none of my business!

    The last (locum) consultant I saw (who was quite dismissive) said my inflammatory markers were raised because I was fat. I tried to explain to him that I'd put on 3 stone due to a course of Prednisone and my severe lack of mobility and that my markers were raised consistently for 2 years prior to that, but he wasn't interested. So frustrating when they won't listen to you because they've already made their mind up what the problem is.

    Is there anywhere online I can check my CRP and ESR against when I get the numbers?

    Thanks, JoJo

  • Yes, you should find plenty of information on this on the web! I'll leave it to you to research it because there is plenty of information.

  • Hi Jojo.

    I remember saying the same thing to the girls (loosely termed, as we are all over 50) I work with when they had asked me where I was sore. It is easier to say where you are not sore! You have got to laugh :)

    Just for the record, I had tennis elbow as well and apparently it was caused by me! The doc told me it was because I was using my arm differently to compensate for my hands or trying to protect my hands and I was probably making small adjustments without even realising it :)

    Any way, welcome to the forum. I find it a fantastic place for information and a good old giggle, hope you do too :)

  • Ah yes I'll be turning 50 next month but I still refer to my friends as 'girls'! :-) Thanks for the lovely welcome! Maybe the tennis elbow diagnosis wasn't so crazy after all? :-\

  • Hi Jojo :)

    Welcome to our friendly fibro forum, you have come to right place for information, support and advice about Fibromyalgia :)

    It is possible to have both RA and Fibro as I'm sure many members will tell you that they don't just have Fibromyalgia for instance I have Hypermobility syndrome (from birth), Fibromyalgia, Chronic Fatigue sydrome, Chronic Anxiety Disorder/Depression to name a few :)

    I can see that my fellow volunteer Ken has give you the link to our Mother site so I would like to give you some other links to our pinned posts, which you can find by clicking on the 'All posts' button in the top left of your screen and they are on the top right of your screen :)

    One of our pinned posts FAQ - I'm newly diagnosed, where can I get information on Fibro please? may be useful as it contains two useful links to sections of our Mother site.

    healthunlocked.com/fibroact...

    Another is FAQ - I have symptoms of Fibro, how is it diagnosed? I think this gives some links to useful information too :)

    healthunlocked.com/fibroact...

    I hope I haven't bombarded you with too much info Jojo and hope that you find the answers that you are looking for. There is always someone listening here so don't be afraid to ask any Q's, join in with the posts whether it be for a moan or a giggle. Together we try to make the fibro journey easier :)

    Wishing you wellness and sending soft healing fluffie hugs :)

    :) xxxsianxxx :)

  • Thank you Sian! Ooh no you haven't bombarded me at all, I am anxious to know as much as I can so I can hopefully understand it and try and manage it as best I can. Although some days I just want to hide under the duvet and cry!

    Fluffie hugs gratefully received too :-)

    JoJo x

  • Hi Jojo, i was diagnosed with RA aged 14, years spent with docs thinking athritis was raging thru my body,about 5 years ago diagnosed with fibro am now 50. Funny, i used to say the only bits that dont hurt are my bum and my nose! Last year my tailbone joined in too, then this year i managed to whack my nose on a cupboard door and it never went back to normal, so i cant even claim that now! Will have to nick your line about eyelashes now. I also have the exhaustion and confusion, cant remember the simplest of things, i get lost on most journeys as i forget what turnings too take. But, i spend a bit of time everyday now consciously relaxing, using relaxation cds, deep breathing or progressive muscle relaxation cds at bed time which help me to stay calm and relaxed which makes it easier to deal with it all.

    Have you had your vit d levels checked as this is quite likely to be too low with fibro and causes more pain and restless legs at nighttime. Really nice to meet you, if you have any questions please feel free to private message me , best wishes,

    Sharon

  • Hi Sharon, thanks for the warm welcome! My problems started off with my hands being stiff and sore for a couple of years and then it went into my tailbone. I couldn't sit at my desk and I couldn't type for more than a couple of minutes before I needed to go run my hands under the hot water tap in the Ladies. Very aware that I was spending more time in the Ladies than at my desk, I admitted defeat one lunchtime in October 2012 and went home, crying all the way because my hands hurt so much to drive and the handbrake was a killer. Within a few weeks whatever I have, had swept through me and affected every part of me. Finally after a year off work, I was 'Medically discharged'. In a strange way it was almost a relief as my job was in Anti Fraud at a bank and I needed to be meticulous and accurate at all times and with my foggy head I stood no chance!

    I've thought about relaxation CDs from time to time but never actually bought any. It certainly sounds like a good idea! The pregabalin mainly keeps my restless legs under control (but not always). Pretty sure I have sleep apnoea as well as sometimes I wake up choking and gasping for breath. Horrid sensation!

    I did have my Vit. D levels checked earlier this year and yes they were low. Was given a two week supply of tablets on prescription and told to buy future supplies online.

    Please feel free to use the eyelashes line anytime! :-)

    JoJo x

  • Hi,

    I have a mental health diagnosis but want to focus on my main problem. After 6 years of feeling like I am permanently cycling up a hill with a hangover I had my bloods tested and I am in a category worse than insufficient vitamin d , I am medically deficient. I am on prescription vitamin d but no change. I have recently read the symptoms of fibromyalgia and I'd say 90% of them apply to me. Am about to tell my doctor this. It is frustrating to constantly be the only one researching how I feel, but anyway. I don't know about fibromyalgia much, am not confident my doctor will be or will be able to help. Not sure how this platform can help me but any advice/guidance would be welcome.

  • lilac_lion,

    may people with fibro have been found to have many additional illnesses in addition to fibro. some are chronic fatigue bulging discs,thyriod,adrenal insufficiency, vit. d problems, hypotension,ibs, chronic fatigue,and the list goes on and on. have you been tested for any of the above? it helps to be able to know the "why"'s when you are experiencing pain unlike all the types of fibro pain. best of luck.

  • Hi Nadine

    Yes I've had IBS for as long as I can remember and I did slip and rupture a disc about ten years ago. I also have two vertebrae that have fused together at the base of my neck. I was diagnosed with Vitamin D deficiency earlier this year.

    I've had terrible fatigue also for about 10 years too. Sometimes I used to fall asleep at my desk at work!

  • Hi Bluebell!

    Thanks for the advice :-) Everyone has been so welcoming and helpful, it's lovely.

    JoJo x

  • Hiya i too live in the iom & for the last year have been to neurologist (privately as my sister passed away in august aged 42 & i had similar symptoms so was concerned i had demyleination too.. Was advised ok on that front) orthopaedics & trauma, rheumatology, pain management (privately who diagnosed fibro), endo, opththamologist & orthoptist all of whom said i need to have another mri & need to see neurologist unfortunately i think all of them thought the other had referred me & i've heard nothing :( it is a nightmare over here! But yes very beautiful :)

    Hope you get answers soon xx

  • Hi Manx1 good to meet a fellow Manx resident on here!

    Golly yes I had to go private to see the neurologist too. Apparently she only comes over once a month and the nhs waiting list for her is horrendously long!

    Although I've been told by my GP that the Pain Management clinic waiting list is even longer at 2 years long? Unbelievable.

    I do find there is very little communication between all the various clinics and departments at Nobles, it is very frustrating having to repeat your symptoms and problems over and over again because they don't know why you're there or who referred you.

    Hope you get your new MRI scan sorted soon and that you have some firm news and treatment too.

    All the best,

    JoJo x x

  • Terrible isnt it i was hospitalised with low cortisol in march in the end i was discharged with no medication or info & endo took me off 25mg of levo saying nothing wrong with thyroid? After 4 days of not seeing anyone i was told by the consultant that it was because it was the weekend & if he was to get a plumber in it would cost £75 an hr! I said we were talking about people not taps... His response... 'Your government cant afford us if you have a problem you should write to your mhk!' Xx

  • Oh my goodness that's shocking and yet sadly, I am not surprised! The MHK's are useless anyway when you do write to them.

    In May last year I was taken to A&E with a suspected stroke, thankfully it wasn't but I was told that it was my arthritis flaring and compressing the nerves in my neck and shoulders making my face go numb. I was told to make an emergency appointment the next day with Rheumatology. Well I tried, my goodness I tried, but was told I could not be seen for 10 weeks, then on the day of the appointment, I had a phone call just two hours before cancelling it. When I eventually was seen (another 5 weeks along) the Rheumy just shook his head and said he could see no sign of inflammation! Hardly surprising after 15 weeks and a full course of Prednisone! Nobles needs a serious shake up!

  • hi lillac_lion

    welcome to the site i have read all the comments we do all have various other illnesses as well as fibro & lots have to really fight to get diagnosed have to wonder if some of the gps & rheumys should be really doing the jobs i am lucky i cannot complain about mine.sending you lavener fuffiesxx lilian

  • Thanks for the welcome Lilian! :-) x x

  • So sorry sweetheart!!! Sounds like Fibro to me. It is such a hard disease to deal with. It moves around your body and like you said fatigue is horrible. Then at times you feel as though you are going crazy because you can't remember the simplest of things or keep your train of thought. Do you have a pain clinic where you live? That saved me. I still have pain and all the rest but it has made life bearable. Hope this helps. xxxx Mitzi

  • Hi Mitzi,

    I've been told there is a two to two and a half year waiting list to see our local Pain Clinic! Sounds unbelievable to me but my GP said it is pointless putting me on the list as by the time I am seen I will know more about managing my own pain than they will. I'm not sure if that will be the case but who knows? Have felt very much in the dark about Fibro until joining this forum. It is weirdly comforting that I can talk to others with the same pain and issues as me xx

  • Well, that wait is crazy. If your gp can help you great, but if not I'd get on the list. You may want to anyway as so much can and does change in that amount of time, believe me. Some doctors are okay with giving pain med's, others not so much. The Fibro does get worse but with the right doctor and med's you can get by so it's not unbearable. Hope you get some relief soon sweetheart!!!! xxx Mitzi

  • Hello Lilac_Lion

    2 years since your post so apologies for that. hope you are feeling better. I note you are on the IOM and as I am looking for assistance for my husband I wonder if you had found anyone of help in this beautiful island

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