how do we know? : hi! I’m 66, have had... - Fibromyalgia Acti...

Fibromyalgia Action UK

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how do we know?

Eggcustard12 profile image
8 Replies

hi! I’m 66, have had a bad back for 20 years or more with other painful symptoms : swollen tight hands feet, shoulders , that burn possibly waking me up in morning.

Pain does not go away in back levels of pain go up and down. Good day bays. Some days I can’t stand up and back goes into spasm . Meaning I’m in bed possibly 4 days or more.

Had mri nothing on that! Waiting now 2 years for rheumatologist appt at hospital .

My doctor thinks it’s fibromyalgia I need to know what I have so I can take appropriate care of myself. I also care for my husband with Alzeimers . I cannot take strong pain killers as need faculties about me for him.

Is it time to apply for attendance allowance to help someone assist me?

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Eggcustard12 profile image
Eggcustard12
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8 Replies
Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff

You can contact our benefits team for advice on whether to apply for attendance allowance

FMA UK benefits helpline information leaflet
Evonne02 profile image
Evonne02

You need social services to pull their finger out and help. You need looking after. If you keep refusing medication your health issues will just get worse, so please listen to your gp or consultant. It doesn't make sense that you want to be a martyr just so you can care physically and emotionally for your husband. It's just not logical abd will result in you being hospitalised and your husband put into a home whilst you're gone.

If you don't want social services involved then go to aged uk or another service as you can only carry on like this for so long. You should also be applying for Pip for yourself as your health issues sound awful and are probably a lot worse than you've divulged on this platform.

All the best 😍

Eggcustard12 profile image
Eggcustard12 in reply to Evonne02

evonne02, thank you, I can’t get pip as I’m 67 soon. Had SS assessment and they offered respite for me but husband won’t accept. I thought if I could get attendance allowance , I could pay someone to help me. Not sure whether I would get it as still have no name for illness .

Evonne02 profile image
Evonne02 in reply to Eggcustard12

If you've not received pension or retirement age you can apply for it around 6 months before that date. No doubt, and typical of SS not to give due diligence to those in need, and to help properly so clients are not continuously coming back for help. I'm afraid it's up to you about the respite as one day you'll find you just cannot do it. It's like an employer not giving the employee any of their holiday entitlement. Doesn't he think you deserve a rest, a little time to heal or get help for your own health issues? Are you thinking you cannot have a needed operation, hospital appointment, or treatment due to this situation you find yourself in? It's all defeating the objective & youll need to put yourself and your health first, otherwise you cannot help him.

Age UK can set up daily help and a befriending service etc, so you can get help and heal. SS & your Gp can look at the local proscribing service to give help with your husbands needs as well as your health/medical & mental health needs too.

If you want to you can speak to your local CAB (in person or online), or your local MP, One Stop Centre, etc.

You don't need a name for your illness if you haven't been diagnosed as yet. All they need to know is how your symptoms affect your mobility, your ability to complete daily activities, how far you can walk, your pain and where it is, your ability to get from A to B alone or with help, how it affects your sleep. Unfortunately, you'll probably find, once diagnosed , that what you do for your husband is exacerbating or the cause of your pains, stiffness, etc. Apologies for being the beater of bad news as this happened to me when I worked in the care field.

I'm curious to know if SS assessed you and your husband but didnt do so for aids and adaptations for you and your home. No day centre referral for either of you? Did you get anything to help get you out of your bed? Mine is called a bed strap.

I just wish you all the best so badly and hope you get help asap 😍

Eggcustard12 profile image
Eggcustard12 in reply to Evonne02

No health equipment offered. Thank you for all your valid info. Will be on phone tomorrow .

Evonne02 profile image
Evonne02 in reply to Eggcustard12

Tell them you need an OT assessment for yourself and for your husband too. All the best 😍

Eggcustard12 profile image
Eggcustard12 in reply to Evonne02

What’s O T

Evonne02 profile image
Evonne02 in reply to Eggcustard12

Occupational therapist. Maybe his gp can do this for you both individually. 🤔 x

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