My fibromyalgia journey

[Raddi1]

Was diagnosed with fibromyalgia in October 2021 then a neurologist diagnosed me with FND at around the same time anyone have this double diagnosis.I was very I’ll from 2020 waiting on surgery which was delayed due to the pandemic in and out of hospital from December 2021 very unwell and very scared caught covid February 2021 was in a covid hub for 48hrs as my symptoms were not the normal respiratory symptoms.had my first surgery March then second surgery April, never fully recovered doctors kept saying was covid then surgery my persistence was what got my condition diagnosed my health is very poor and I struggle mentally as I deal with these conditions went from a fit healthy woman who worked loved live and my family, joining this site has been helping me connect to other sufferers which is a lifeline and positive experience in this journey whish I had found it sooner

[Hazel_Angelstar Administrator FMA UK Staff]

Hi and a warm welcome to the forums. You can find general information on fibromyalgia at our website fmauk.org and our patient information booklets at fmauk.org/publications

[Raddi1 in reply to Hazel_Angelstar]

Thanks

[Darceydoris]

Hi Raddi1 I also feel the same it's very isolating. I was so glad when I found this chat as I feel people who don't have fibromyalgia have no idea what's it like. I was very fit and active and loved my job until about 4 years ago when I started to feel unwell. I have to pace myself all the time I want to do so much but know I can't. Most of the time I feel like my body does not belong to me but every now and again I get a short period where it feels different more like the old me. Does this happen to anyone else x

[PinMartin]

Hi,I also got diagnosed with fibromyalgia and fnd within 15 months of each other,can’t help thinking they’re linked somehow.Sorry you went through such a hard time. I’ve had an enormous amount of stress as well these last 6 years though not as dramatic as your experiences. Also had m.e for 22 years and a couple of autoimmune problems.It gets very confusing.Pain seems to trigger the fnd and my neurologist has asked physio and a psychologist to have a look at me. No idea if it will help! Anyway,you are not alone.Hope things improve for you. I have to pace all the time as well. Good luck 🌞

[fredsmummy]

Hello! Yes I have diagnosis of both too, they both seem to be brain signal type disorders although display different symptoms and overlap symptoms . I have both from each group probably as you do!Can sympathise with you completely on the change, the depression that comes along with it is real 😩 we’re all here to support x

[Patdoyle in reply to fredsmummy]

Hi what are the symptoms of FND. I get some weird symptoms and am now waiting to see a neurologist

[fredsmummy in reply to Patdoyle]

Hi Pat, for me personally I suffer with non epileptic seizures, the initial one they thought had been a mini stroke. But I get lots of twitches , jerking, disassociation, weakness of the limbs . Also when I was first diagnosed I had out of nowhere an episode of tics , jaw protusion and my seizures were then regular. Thankfully now hardly ever

[ALKT in reply to fredsmummy]

ticks or muscle jerks can be a side effect of many meds especially those that have an effect on seretonin an psychotropic meds should of been checked as a possible cause.

[fredsmummy in reply to ALKT]

No , I wasn’t on any medication at the time of diagnosis

[fredsmummy in reply to Patdoyle]

Here’s a link rarediseases.org/rare-disea...

[Loobyloo1966]

HiI like you have had both FND and Fibromyalgia diagnosed 2021 in a short time frame following 3 surgeries within 6 months in 2020.

I have at last got an appointment to meet up face to face with FND clinic in Birmingham in August. Apparently they will then refer me to the most appropriate support. I have had physio in the meantime to deal with balance as I trip over my own feet and my neck back and shoulders stop my every day living. My life has since turned on its head, I had my own business, travelled length and breadth of the Country and now can’t even put my shoes on let alone have the energy to walk anywhere.

I am tremendously lucky to have a loving caring husband who tells me daily he loves me unconditionally and is my rock. It doesn’t stop the guilt and frustration. Keep in touch I’ll let you know if the FND clinic comes up with anything. As for FM it’s pacing yourself and knowing when to rest up if you can. The exhaustion is awful. I think there is a definite link between FM and FND but there’s not much about it. Anyone got any clues??

[Raddi1 in reply to Loobyloo1966]

Hi thanks for your response I am still under my neurologist who has been outstanding I have physiotherapy and occupational therapy waiting on an psychiatrist appointment as trauma and viral infections can be a main trigger for these conditions ie ptsd look forward to hearing how you get on at the FND clinic my neurologist has stated to me either one can trigger the other I had a lot going on covid/surgery so don’t know what link they contributed to as they are both nerve system related maybe an overload god sound like a robot 🤣

[Loobyloo1966 in reply to Raddi1]

Hi If you don’t mind me asking What do Occupational Health support with?😊

[Raddi1 in reply to Loobyloo1966]

Their support includes taking therapy mindfulness help with the anxiety and depression side all over support really my next step was an psychologist who has referred me for a social care referral and I am now waiting on an psychiatrist appointment it sound overwhelming all of the above but definitely has helped guide me through this journey and has been life saving at times like you I have a fab hubby and family but feel this can affect them to so this added support takes away some off the stress from them also you need support outside of family 😍

[Cotswolds25121]

Hello Raddi1, apologies before I begin as this isn’t only to you but as lots of people do the same. Can I ask that when explaining diagnoses it would be helpful if instead of using the for example FND it would be easier for others to understand what this is if it was put in full. I know it’s easy to Google nowadays what it is but it just makes it easier for others to understand.Just a thought 🤔I remember being on training years ago and the man leading the training was using the shortened version all through the morning and being new I did not have the faintest idea what he was meaning until I told my colleague at lunchtime and he discreetly pointed out there were new people who may not understand the terminology. Many thanks

[Raddi1 in reply to Cotswolds25121]

Yes totally FND is a functional cognitive disorder will be aware of this in any future posts

[Cotswolds25121 in reply to Raddi1]

Hi Raddi, thank you very much and for replying so quickly 😁I appreciate that. Enjoy your day 🤗

[dippystuff]

I also have Fibro and FND, and it's truly been debilitating for me too.

I went from being a slim and very energetic and active A&E nurse, to being a very overweight (due to drugs ) and very inactive nurse who is sat at a desk running a clinic.

It's all happened within the last 6 years, ever since I had my second mastoidectomy operation.

Every day/week/month I got a bit worse and a bit worse. GP was great and sent me to Rheumatologist, who diagnosed me with Fibro and FND.

So, I've ended up changing my job several times through redeployment due to my declining health/abilities, gained another person in weight, lost all my social activities and hobbies as unable to do them, and I am now in danger of losing the job I have as my manager doesn't like that I 'won't participate in team building days and be a fully committed team member' ! (She doesn't like that my union rep is involved and supporting me either ! ) I also have to use a wheelchair for distances longer than 60-100 feet, use a walking stick on my 'bad' days at work, and have home adaptations galore from OT !

😂

In 6 years, my whole life has changed beyond my wildest imaginings. Thank heavens I married a wonderful man who supports me 100% (and also does all the housework/cooking/laundry/shopping etc, because I can no longer do anything except work and rest without starting a flare up !) and that my kids are adults now (though still at home).

Lots of others on this site haven't had the relatively quick 'deterioration' in their health that I have been unlucky enough to have, but some have had it far worse too .

It's unpredictable, and individual, so make the most of the 'good' days, and be patient and kind to yourself on the 'bad' ones. Just post here whenever you want a rant, or have a question, or are simply feeling 'alone' because your family and friends don't understand what it's like.

[Raddi1 in reply to dippystuff]

Thanks sorry to here about your journey a friend once said to me she didn’t know how I do it,I said I didn’t have a choice that’s what this illness takes from you your choices on how you can live your live but I always look at myself as a survivor and strong woman reading the posts from other sufferers of this illness genuinely feels like a big hug knowing there is people like you that respond with kindness and support so thank you

[Fibrofog]

I feel for you I really do. I too have been in and out of hospital for a while. And I too am so thankful for this site.It's just so nice to talk to someone who knows what you ate going through, so you don't feel so alone xx