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Aibu ... To hide my diagnosis and almost feel ashamed

(68 Posts)
Grannycuddles Sun 13-May-18 23:40:35

After reading an earlier post about how a lady gets abuse off people (generally older generation) over her mobility scooter... It made me think...
My situation... I've, fairly recently , been diagnosed with fibromyalgia. It all started 12yrs ago, gradually getting worse until about 4yrs ago... Not even 40 at this point, I had a bit if a cry as I was moving like I'd expect to move when I was hitting 90 (no offence intended to spritely 90+ folk) and had alot of aches and pain.. so went to the doctors who referred me to a rheumatologist..long story cut shortish after LOTS of tests scans xrays ect I've got a "diagnosis " at 1st I was, phew... I'm not going mad, it's all real. But, apart from immediate family, I'm trying to keep it quiet as I do feel that people think its a made up illness, not really a "real" disability ect. Been a month now and my emotions are very irratic and I don't know how to feel... I know It's very real.. And don't mean to upset anyone else with fibromyalgia but I do feel if people know they'll just think its all in my head or something. 1st post ever so please be gentle with me ❤

grannyactivist Sun 13-May-18 23:45:25

Just off to bed, but didn't want to 'read and run', so a brief response: There are other grans on here with fibromyalgia and a few of us with Polymyalgia rheumatica, so don't expect anything other than kindly support. smile

Grannycuddles Sun 13-May-18 23:54:52

Thank you @grannyactivist

hildajenniJ Mon 14-May-18 00:10:49

No need to hide it. My DD has fibromyalgia, and has just been diagnosed with rheumatoid arthritis. She is just 35. People are understanding, once they realise how disabling it can be.

paddyann Mon 14-May-18 00:58:56

My daughter isn't 40 yet and she has fibro plus multiple other things .She was as fit as a flea all her life until she had her last baby.She ran her own business and a pub with her husband and now spends most of her time in her bed.Tell people ,unless sufferers are honest about it people will continue to think of it as a "made up in your head" illness.Remember ME in the 80's the so called yuppie flu ? Now of course its recognised as a serious condition that affects many .We need fibro sufferes to stand up and be counted now so they can get the help and support they need

agnurse Mon 14-May-18 04:11:05

Fibromyalgia is absolutely a real disease and there is documented evidence that people with the disease have changes in levels of neurotransmitters. You have nothing to be ashamed of. Sadly the erratic moods could well be part of the disease as well.

TwiceAsNice Mon 14-May-18 06:37:15

IT is not in your head it is a real debilitating disease. I worked as a therapist in the NHS and saw many patients with Fibromyalgia often because the illness made them depressed. Please make sure you have adaquate pain relief from the beginning often you can be referred to a pain clinic by your GP to get it right. Also many people find hydrotherapy helpful in a lot of areas you can be referred for this also by your GP.

sodapop Mon 14-May-18 06:40:03

Sorry to hear about your health problems Grannycuddles I hope you have some treatment which will help. I don't understand why you think people will think your condition is made up. Take a broader view of this and think how you can help with research and help other sufferers if you talk about your fibromyalgia and maybe do a bit of fund raising. Good luck.

DanniRae Mon 14-May-18 08:09:29

Please don't feel you have to keep your condition quiet. My sister-in-law had Fibromyalgia so I know it's real. I think she was on anti depressants - maybe you need to ask about having them too??
I am sending you my best wishes x

cornergran Mon 14-May-18 08:23:12

Please don’t feel you must hide your diagnosis grannycuddles. I think I understand a little of your feelings as I was diagnosed with this debilitating illness at 42. I have found that understanding has now improved, people have heard of it even if they don’t understand it. You’ve done nothing to cause this, it isn’t your fault. Do some research. Consider treatment options to help manage symptoms which tend to fluctuate. I was very lucky on diagnosis as I had a very supportive employer. I’m still lucky I guess as I can do most things I want to do if I adapt how I do them. It’s early days for you, the diagnosis takes some getting used to. Sometimes CBT can help with adjustment and negative thoughts. Be kind to yourself, do as much as you can that you enjoy, it’s so important that life isn’t just full of things you think you ‘should’ do. If it helps ever them pm me, happy to listen at any time.

Panache Mon 14-May-18 08:39:01

Such a real disease,well documented and indeed very sadly suffered by far too many people..........and yes from quite an early age.

You really have no need to keep this a secret and hide it away from Joe Public.Just act naturally and share it with those closest and then forget all about this fear you hold ........quite irrationally BTW.......within.

Learn all about it and just make the best life you can knowing and dealing with your limitations,and please be assured all those people that matter will be kind,understanding and down right sympathetic.

I wish you all the very best grannycuddles.

Teetime Mon 14-May-18 08:45:50

grannycuddles I'm sorry to hear of your health problems but they really aren't your fault so please don't feel guilty. You have an official diagnosis and hopefully the correct treatment for a clinical condition. It takes a while to get used to the idea that you have a long term condition. You join many people on here including me living with something similar. whilst we don't want to burden other people with tales of our symptoms we do want them to be understanding about our limitations so kits best to discuss it openly and frankly to your nearest and dearest and not mind about anyone else its not their business anyway. Good luck and I hope you can get settled on some medication and enjoy life. You have a long term condition don't let it have you. smile

Nanabilly Mon 14-May-18 10:44:49

I have fibromyalgia too and I can understand why you are asking if you should keep it secret but you will not be doing yourself any favours if you do that. Your loved ones should be understanding of you having bad spells and being unable to do much not to wonder what is wrong and possibly think you are being unsociable or unfriendly or just plain lazy. Telling them will enable them to understand why you can't do certain things at times. When I was newly diagnosed I remember Nick Clegg doing an interview on the tv about getting lots of people off benefits and back to work and he said "people with back problems and fibromyalgia for instance"
It was then that I realised that it's a very misunderstood condition and needs money and research spent on it.

Luckygirl Mon 14-May-18 11:03:24

Gosh - I don't remember Clegg saying that! Definitely out of order.

The trouble is that fibromyalgia and ME can be helped with antidepressants and people make the assumption that this means it is a mental health problem - but even if it were, that is not reason to dismiss it!!!

There is no need to feel uncomfortable about your diagnosis from the point of view of others knowing about it. If they do not understand then that is their problem and not yours.

I do hope that you will respond to treatment and feel a bit more comfortable soon.

Squiffy Mon 14-May-18 11:15:16

I've come to the conclusion that it's better to mention fibro and ME, if for no other reason than to spread the word IYSWIM!

People who know you and how active you used to be can then realise the change that's happened and learn from your experience.

I'm still amazed that people I've come across have absolutely no idea about the either condition, despite the fact that there are so many people affected by them. I've frequently been told that they've heard of them, but know nothing about them.

Then, they are the ones who are amazed once they learn just how debilitating both conditions are!

humptydumpty Mon 14-May-18 12:15:38

Is there a support group locally that you can join?

paddyann Mon 14-May-18 13:31:55

if you're on Facebook there are a lot of support pages

Dontaskme Mon 14-May-18 14:08:04

grannycuddles I don't normally tell people. Not for any reason, just I don't think its necessary to talk about illnesses. I also have chronic arthritis and fibro often goes hand in hand apparently.

It IS very real as other people have said, but I do find that many people don't take it seriously and that includes my AC and my H. He's not my DH on this subject, just H!.
A lot of people seem to have been diagnosed recently which, I think, is possibly why some are a bit dismissive, as someone else said rather like ME in the 80's.

I was given antidepressants and some tablets that I can't remember the name of, but they're usually for epilepsy.

There is a support group in my town who meet once a month, so maybe have a look for one near you.

Its not in your head of course, and if anyone implies ask if they know the facts or print some stuff off the internet and hand to them.

Chin up and don't worry about talking about it.

agnurse Mon 14-May-18 15:30:30


Would it be pregabalin (Lyrica) or gabapentin (Neurontin) that you're taking? You're correct, these are usually prescribed for epilepsy but they are also helpful in treating nerve pain. I've seen them used frequently for chronic nerve pain.

Dontaskme Mon 14-May-18 15:48:56

Google is a wonderful thing - had I put in epilepsy drug used for fibromyalgia I would have found the answer too, and looked as though I knew what I was talking about

Grannycuddles Mon 14-May-18 21:29:31

Thank you all for your replies and support xxxx @paddyann ... Mind also started after the birth of my last child, she's 12 now! I think I need to do some research so I'm "Armed " with facts if needed. I really do appreciate all your responses. ❤❤

Grannycuddles Mon 14-May-18 21:30:06

Mine, not mind. sorry

Brigidsdaughter Tue 15-May-18 09:58:16

Hi Grannycuddles. I have Hashimoto's and low platelets - also autoimmune diseases - so I know what you mean about others not 'getting' it. My Endo says its because its invisible unlike a broken arm.
I joined Health Unlocked. There are groups for all conditions including one for Fibromyalgia and well worth joining. ♥️

grannygranby Tue 15-May-18 10:01:16

Yes and don’t forget that antidepressants are prescribed because of their effect on the nerves and the skin and not because of depression. It frustrated me so much that my mum who had chronic very painful shingles refused to take them as she thought it was implying it was all in her mind. There is a lot of prejudice against anti depressant but the ssri inhibitors can really help in physical nerve disorders.

Cabbie21 Tue 15-May-18 10:02:18

It does often seem to be the case that people suffering with fibromyalgia in particular find they are not taken seriously by those who do assessments on behalf of the DWP for PIP and ESA. The condition can indeed be debilitating. I do think that talking about it will help to dispel the myth that it is a made up condition.