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

Grannycuddles, many of us on here have chronic health problems and 'suffer in silence' with debilitating, painful and/or 'invisible' conditions - I'm sure you will find plenty of support and understanding. People can be strange - when I first got ill, a few people I had thought of as close friends thought I was just getting lazy and drifted away, whereas others were brilliant and very helpful. Your diagnosis is nothing to be ashamed of and the more you can learn about it, the better able you will be to educate anyone that is not initially supportive. I hope those around you are kind to you and that you are not suffering excess pain or stress through not wanting to ask for help etc - if there are things you can no longer do or find difficult, you might be surprised at how willing people are to help. Gransnetters are always here if there is anything you need to talk about, or have a rant etc - there's good and bad everywhere but I'd say most are decent people and will only want to offer moral support. I hope today is a better day for you

I was diagnosed with Rheumatoid Arthritis a few years ago and have really struggled to find any affective remedy. I’m on high dose pain killers and other prescription medications, but didn’t receive my Fibromyalgia diagnosis until late last year - along with even more medication!

I can’t keep it to myself - I need walking aids and am heading towards a scooter . But I do have a wonderfully supportive family - and an inate stubbornness which won’t allow me to give in to either condition - on any other but my worse days.

I wish you luck with managing your illness - for what it’s worth, it is actually acknowledged by DWP and others as being ‘real’.

My daughter was recently diagnosed with fibromyalgia after many years of receiving lots of different diagnoses. She now attends a fibromyalgia clinic and has appointments with physiotherapist, psychologist, pain clinic and counsellor. She says that a new prescription has helped a little with the pain but has caused weight gain. There are days when she cannot get out of bed in the morning because of the pain and finds quite ordinary tasks extremely stressful. Other days she feels quite well.
It is not a disease I would wish on anyone but, it does seem that it is becoming more recognised as a very debilitating illness,, not just ‘something in the mind’.
Grannycuddles, do tell people. I think people may be more understanding than you expect. Any who make the remarks quoted on here, dismissing the seriousness, need educating but, don’t let their comments get to you.

My daughter is a fibro sufferer and I find it very sad that the people who are most unsympathetic are her own brother and sister. They rarely see her and are unaware of the number of times she's had to cancel appointments etc.
If she makes a superhuman effort and it coincides with one of her rare 'good days' she can get herself to an important occasion e.g. their weddings. She's then faced with remarks like
"See, you can do it if you really want to!"
Never mind that she'll probably have to spend the next 3 days in bed recovering!
In some cases it's 'Damned if you do and damned if you don't!'

I am lucky enough to have Polymyalgia and have recently been told by specialist that I have fibromyalgia as well.
Am on 25 tablets a day plus 6 suppliments... I have had to give up my job teaching art and selling my paintings at shows and markets every week..In the end I couldnt walk around the room helping my students and cant hold a brush to paint myself any longer.. I can't walk , have to use a rollator or I fall over...
The steroids and other meds have caused me a huge weight gain which isnt helping, but with little activity losing weight is almost impossible ..
I expected to be looking after my husband in later years when I married my dear hubby 17 years ago, as hes 13 years older than me, now its him looking me..has to help me shower, dress and do the chores in house.. The polymyalgia started when I was just 49 ...
You just have to try and keep cheerful, hard though it is.. sending gentle hugs to everyone who has this awful pain xx

One of the issues with fibro and ME is the fact that they are fluctuating conditions. On a 'good' day a person can appear to be quite normal (for want of a better word!), but people don't realise that for every normal day there have been several bad days.

Also, the payback after any exertion, however small, can be horrendous - either pain with fibro, or total and utter fatigue with ME.

Do a Barbara Windsor - let people know so they can be understanding. I don't know anyone who has fibromyalgia but I have heard about it a lot, I am sure most people will be sympathetic and take it seriously.

DWP etc have a vested interest in not taking it seriously - I think most other people will.

I have fibro and other issues to, so completely understand where you are coming from. You certainly find out who your friends are. Mine came to a head after a fall on the ice in 2010. Had back problems since I was 16. I get why you think you are being judged or misunderstood at times. Gentle hugs x

Grannycuddles Quick message as I have to go, sorry.. I'm so sorry about what you are going through.
You are not to feel ashamed, please! I do understand! I am disabled, wheelchair user, live alone, Fibromyalgia, M.E. Arthritis and Back Injuries. When Fibromyalgia was diagnosed by Hospital Consultant, I was sent back to GP for medication, and GP said on reading diagnosis "What good is this to me? It doesn't mean anything."
That left me mentally scarred ever since. I have never been able to manage at home and have to keep lying down in pain. Plus my sciatic nerve trouble is getting worse. No one seems to realise how difficult it makes one's life.
Yet:-
Remember you are not alone! There are many of us suffering with it! Please do not despair. I am so sorry you are feeling upset, I do understand. We will all help each other. Please remember, you are not alone. Sending lots of love, L

I do sympathise with you over your diagnosis and feel quite sorry for people who have this type of illness. I may be wrong but I believe it was widely recognised in the USA long before it was recognised here in the UK. I was diagnosed with an auto - immune condition last year, and for quite a while thought I had the same condition that you have. Mine is different to yours but does have some similarities of symptoms. Part of the problem is ignorance on the part of some people who make quick judgements on what they perceive .... without realising that there are many symptoms and also good days when you can do much more than others. Stress can make things worse and cause flare ups. Sometimes you just have to ignore the ignorant people and hope that they are never unfortunate to have this themselves.

I have erythromelalgia and I understand 100% how you feel but at lease it is now generally accepted that Fibromyalgia is real and research is happening. Erythromelalgia is unfortunately more rare. Many people in my online support group have Fibro too.

I suppose I tend to keep quiet like you because of the funny looks and the fact that the condition when described makes me sound like a fantasist, even among my more distant family members. We shouldn’t be hiding it I know but it is hard.

I was diagnosed 6 years ago, and I do tell people, but 1 stupid women said "Oh thats psychological, which felt insulting.
I put mine down to overwork, and years of constant high stress, so I'm fully aware that mind and body work together.
Tablets for me don't work. I try to lead as stress free a life as possible, which can be isolating and easier for me as I live alone.
I did have councilling as I was referred from The living with pain clinic, and I gelled with the lovely lady, who helped me to overcome a lifetime of abuse. She also taught me meditation, self care and self respect.
Make sure you have time out for yourself x

eebeew do you take anti depressants and the blocker ones? Or will the pregabalin help with depression too? Xx

I'll have a look at that, thanks brigidsdaughter xxx I've been given a low dose of pregabalin, which has helped lots with my sleeping, but not a great deal with pains... And not at all with the stiffness. I just don't seem to beable to get going sometimes grannygranby cabbie21.. I've got a form for pip here, my sister in law said to get one for help , but I'm not sure I'll get anything as like so many of you, my pain lessens and increases on any given day! I don't need a scooter, and if I am having a flare up I can still dress, albeit slowly and stiffly. The only thing I can't do is fasten my bra.. So I got a pull on on for emergencies ?. I'm not "constantly" disabled .. Although I'm never "normal" or completely ok. I feel like crying just thinking about the stress of it all atm ?

As grannygranby says anti depressants can be used for fibromyalgia. But
those used for pain are the older tricyclics not the modern SSRIs. The dose is smaller than for depression. They should probably stop calling these older ones antidepressants as they not used for depression any more. I have been taking them for years and they do help with chronic pain.

My daughter has Fibromyalgia and she spent the last 6 weeks of her first pregnancy on crutches. They lived in a flat up 3 flights of stairs, you can imagine the pain she went through. I didn't realise some people think it's a made up condition - it certainly isn't. Don't hide it, although I imagine you don't need people fussing over you, they need to take it into consideration. Thinking of you xxx.

I am fortunate enough not to have this debilitating condition, but would urge you to talk about it. Just tell people. most people have at least heard of it and know it is a real condition. Looks like there's plenty of good advice and encouragement on here.

My DD has fibromyalgia, she has had a difficult couple of years and then a diagnosis.Also a newly retired friend who is very distressed as he wanted to do so many activities now that he has, at last got the time, after a very busy life.
Deep massage can help, and painkillers and managing your life differently but it is a hard thing to get used to especially when you are only just considered to be middle aged.
My sympathies to all who are living with this.

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.

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.

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. ♥️

Mine, not mind. sorry

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. ❤❤

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

Dontaskme

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.