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

jacig the spoon theory is good, I tried it out today.. But can't work out how many spoons I am using... I do know that I've had a busy day and have used some of tomorrow's spoons too though ? and I have to go to work in the morning ?. It's hard pacing yourself when you've got a growing family and alot to do ?lynneB59 sounds rough for your son, at least my girls are all getting older and more capable now. And are very good at helping with the housework that really sets me back. Hope these antidepressants keep working for him. Xxx

My eldest son has constant aches and pains, depression, feelings of exhaustion. He has been like this for 10 years or more. He had x-rays, blood tests, scans, etc., which all came back normal. Finally, after various illnesses were ruled out, he's been told he's probably got Fibromyalgia. He is on antidepressants (the 4th type he's tried, which seem to suit him now), and strong prescription-only painkillers.

My son has to work full-time (10 hours a day, over 4 days, plus 90 mins each way on buses)so that he can pay for his children(he doesn't live with them), his rent, bills, etc.

I think some people dismiss Fibromyalgia as being "in the mind", but the physical pain is real. It can be very debilitating, and a couple of years ago, he was so bad with it, he had 3 months off sick from work (his employers are a huge company and they look after their staff very well), but he can't keep doing that.

When my son sees his children (6yrs and 3yrs) at weekends, he chases them around, swings them about, does all the rough and tumble stuff.... and then he's in lots of pain for days afterwards.

I have fibro, and it is hard to explain to people who don't know. I was told to goggle " the Spoon Theory" it is a visual way to help in understanding. Hope this helps

Squiffy. Thank you, when she rang after she received the letter and said the person answering was very sympathetic and helpful. He warned her that 90% of appeals fail at the first hurdle so to be prepared to have to go to tribunal. She now has to register at the job centre before she can get a sick certificate but, she says, she can hardly truthfully say she is available for work when she has hospital visits at least once a week, sometimes more.
I cannot get my head around the fact that she has evidence from several professionals including the neurologist and GP but that is ignored by someone with a tick list!
She worked full-time for over 25 years before she had to give up because of her illness so is hardly a scrounger.

Thank you Grannycuddles, but I have to confess that, when the ESA period expired after two years, I didn't have the bottle to go through it all again and ended up using my savings for the two years until my pension kicked in. I hated 'giving in', but I just didn't have the strength to go through it all again. I know I was lucky to have savings to do that, but in many ways I regret it - not only have my savings plunged, but it feels as though the system won! It shouldn't have to be like that

squiffy well done for your perseverance xxxxx

I'm wondering whether to even try for it, I've got the forms and the proof from the he docs but not sure it's worth the stress. tweedle that's terrible about your daughter . And she sounds like she's worse than me, why do we need to be at deaths door 24/7 to get any help... It seems so unfair xx love to you all xx

Tweedle I'm so sorry to hear about your DD's experience. All too common, I'm afraid. I went through the same and appealed. I failed the appeal and so went to Tribunal. I was terrified!! The Tribunal doctor and judge were so understanding that I was amazed. I was granted ESA and it only took them about ten minutes after the assessment to make their decision, so I was informed on the spot.

The stress is awful and is the last thing you need when you're unwell. Unfortunately, the system doesn't cope well with fluctuating conditions. Make sure that your DD emphasises on all forms etc how she is on her worst days.

Having posted yesterday about my daughter’s fibromyalgia, just an update. She went for an assessment for benefits a few weeks ago. Last year, the assessor seemed to understand the problem as she had a family member with the condition. Very different this year! She got the results of the assessment yesterday and was given no points at all although her condition has worsened since last time. Apparently, she has no problems because she can “use a mobile phone and put her glasses and coat on”. The assessor said in her report that she travelled alone to the assessment (her partner took her), that she could bathe herself (her daughter or partner helps) and that she looked “well kept”.
She will appeal but could do without the stress.

Thank you everyone for your comments and support, and understanding. you've all made me feel a bit more comfortable with this xxx

I have every sympathy Grannycuddles do tell people about your illness, it is nothing to keep quiet about. I know someone recommended some magnetic pads to put on your back etc from Boots. I got them for my Polymyalgia and they helped. Do ask in the shop about them.

Chinesecrested join the club. The good news for us is that PMR usually burns itself out after a couple of years, however some people have it longer and others for a shorter time. I stop taking steroids this week after two years. I can remember saying to my DH ‘even my fingers ache’.

GrammaH, a GP I knew a bit back told me that there was an injection you can have for the pain of costochondritis if it got really bad. I had it for years. It has subsided but never gone away completely, which I think it can.

Anyway, maybe you should ask your GP about the injection.

No, I sympathise with you in a big way - I know it’s very real - I know a lot of people with this. Be kind to yourself and take care, do what the doctor says; they understand this condition very well and I wish you the very best.x

Ironically Chinesecrested I did feel "creamy" at times with fibro: as if I was so weak/tired that my muscles were made of cream/jelly

Creaky not creamy!

I've got a polymyalgia, which is excruciatingly painful, and debilitating. Luckily, though, it's responsive to medication. The pain level goes down from being literally unable to get out of bed in the morning (it takes 15 mins to sit up and another 15 to stand) to just being creamy in the mornings and evenings. It's controllable but I don't know that it ever goes away. I'd rather have that than fibromyalgia though, which sounds horrendous

& I never said that anything about it was "easy" GrammaH

Just explaining why a fibromyalgia diagnosis is a double edged sword.

& that not all diagnosises are a diagnosis of a set disease, some, like this, are umbrella terms for a set of symptoms after other known causes are ruled out. I believe it is called a "differential diagnosis". As opposed for a set thing that you can test for.

I have been diagnosed with it in the past, yes. Not currently no.

In my case it was triggered by a combination between childbirth and an undiagnosed illness at the same time. Took about 3 years to build back up to "normal" & a full recovery.

Easier said than done notanan. Do you suffer with it?

The difficulty is that fibromyalgia is not A disease, singular. It is an umbrella term for a collection of symptoms.

So it CAN by psychological. It can be hormonal. It can be over stimulation of nervous systems due to trauma or other illness or childbirth or other stresses on the body... the reasons behind it are varied. It can develop after over reliance on pain killers (in other people, pain relief is the solution). It can have lifestyle causes (and cures)

While it is a "diagnosis" its also unhelpful to think of it as such because each individual needs to figure out their own triggers and solutions.

It does not need to equal a progressive deteriation, unfortunately for some a "diagnosis" resigns them to such and it becomes a self fullfilling prophecy. For others a diagnosis is a spring board to recovery.

A good approach for many = dont over do it on your good days but DO push yourself on your bad days.

As an holistic therapist, I can say that fibromyalgia certainly seems to be on the increase. We have much to learn. I think it would help you-and others -if you said what your diagnosis is, if it seems appropriate at the time. There will be some people that will be disrespectful-so you can let them go out of your life-and others who will be supportive. Tai chi, by the way, has been shown to be very helpful for this condition.

Oh dear, poor you, I can really sympathise as I was diagnosed last autumn with both Fibro and costochondritis, the latter of which is by far the worst and I'm in constant pain. I've tried all sorts of painkillers even tramadol but I don't find my GPS very helpful. I have a lot of help from the Fibro group on Facebook and have learnt most about the diseases from the internet. I definitely think you should let everyone important to you know what's going in as on some days I have to cry off arrangements as I just don't want to get out of bed. You will undoubtedly find the people that matter will be kind and understanding. Good luck

It is the same as any illness you need to let people know you need support or they will be none the wiser and not know you are ill and need a bit of help. There is no need to feel ashamed because illness can hit any of us at any time. Work out what makes you feel a bit better and how much help you need and then make sure you ask. I hope you learn to deal with the pain and do try not to let it stop you getting out even if you have to go in a wheelchair at times when it is bad.

People wouldn't feel ashamed of a chicken pox diagnosis so why be ashamed of one for fibromyalgia? Illness is illness, unwellness is unwellness.

I hope you feel better about the diagnosis soon, grannycuddles. I find a vague "I'm a bit low on energy right now" is useful.

mcem Your description of your DD's other unsympathetic siblings' remarks rang such a loud and true bell with me that I am actually in tears! This has happened to me so often! Mostly by people at my church! Also my adult children, for whom, when I was looking after them, I had to do some incredibly difficult things because of their Covert Narcissist father who was cruel to me and who never gave me a penny, not even towards the children's needs. They just think, with my illness, I need to try harder. It's "Go out for a walk, the fresh air will do you good." I can't get to the front door.... I tried to explain and foolishly said to one of them that if ever she were ill maybe she would realise what it was like. Her reply? "I shall never be ill like that"! I think she is like her father.