HELP my Mum please!

[EmmaA40]

My Mum is going through an extremely tough & painful time. She's 68 & her GP, after countless appointments & prescription changes & test, has told her she may have fibromyalgia. However, she is now being referred to the pain clinic & being tested for polymyalgia rheumatic. She's in constant daily pain & would really appreciate someone to talk to or meet a group near her hometown of Havant, who's going through the same or similar. She also as rheumatoid arthritis & pernicious anemia! Can someone local please help, or anyone advise the best meds. Obviously we're all different so what works for 1, may not for another, but any help or advice anyone can give would be greatly appreciated. Thank you!

[Sorebones]

What a thoughtful daughter you are. I'm too far away to be of any practical help, but there will be someone on the forum who will know what may be of use to you. Your mum has been through what many of us have through, bounced from pillar to post, test after test.... It feels never ending. The pain is difficult to live with, but in that aspect there are things that you can do to make her life easier. Firstly have a really good heart to heart with your mum and find out what she needs (apart from a support group etc as you've done that one). She may need more help than she's letting on. Things like housework, cooking, washing and ironing etc and see if you can ease that for her.

But you're on the right track. Knowing that you are there for her is the biggest help you can give her. I hope you get some more helpful advice 🐸

[EmmaA40 in reply to Sorebones]

Thank you for your kind reply. I have printed everyone's thoughtful comments & will pass them to Mum, who will in turn pen a reply to you all which I will type for her next week. I live miles away from her & work full time, have a young son so feel a bit useless but at least I'm trying to get her the support she needs & doing what I can I suppose. Thank you x

[Sorebones in reply to EmmaA40]

I think you are going over and above hunny!! I haven't read all the other answers yet so not sure if someone has mentioned it, but if you do a search on fmuk night the search bar on this page then they list all the support groups. You will be a lot more tech savvy than me, but try various searches. You might get some ideas from it.

It is very difficult when you're so far away. Our daughter is 4.5 hours away by car. She's expecting twins and I'm not close enough to be of any use to help her when they're born. So, it works both ways lol. Please don't worry too much about your mum. She wouldn't want you to feel upset. She loves you 🐸

[Greenpeace]

Hi EmmaA40 ,

I'm sorry to hear that your Mum is going through such an awful time, and suffering with lots of pain. She is very lucky to have you looking out for her.

I'm so happy to read that she has been referred to the Pain Clinic as they can hopefully help her with appropriate medication to suit her needs. In the meantime, her results for the other tests that she is having will hopefully be through and may also shed some light as to why she is suffering so much.

I know that you want to really help your Mum right now, but we are not Medics on this forum, and it's not a good idea to suggest what pills another person should take. If I could suggest that she take what has been prescribed for her in the meantime, until she gets her appointment with the Pain Clinic. That would be the best way forward.

If you would like to take a look at our mother site, fmauk.org/ you will find lots of evidence based info on Fibro. You will also be able to find out about support groups on there.

We are all a friendly bunch on here, and maybe your Mum might like to join us if she feels up to it. There is always someone around, day and night to have a chat with, and share some lighthearted humour.

Take care.

GP. 😊

[EmmaA40 in reply to Greenpeace]

Thank you for your kind reply. I have printed everyone's thoughtful comments & will pass them to Mum, who will in turn pen a reply to you all which I will type for her next week. I live miles away from her & work full time, have a young son so feel a bit useless but at least I'm trying to get her the support she needs & doing what I can I suppose. Thank you x

[Rose54]

Hi

I am 62 and have PMR their is no test for PMR they can only go on the inflammation in your blood .Not everyone has high inflammation showing in blood test ,but they can still have PMR.

It can only be treated by steroids and will hopefully burn itself out over some years.

It due to inflammation in the blood vessels ,normally causing pain in arms shoulders ,buttocks and legs .

Your body becomes intolerant of exercise so you need to pace yourself and rest due to extreme fatigue.

If your Mum is diagnosed with PMR their is a site on Healthcare Unlocked if it is indeed Fibro their is this wonderfull site.

Good Luck

Rose

[EmmaA40 in reply to Rose54]

Thank you for your kind reply. I have printed everyone's thoughtful comments & will pass them to Mum, who will in turn pen a reply to you all which I will type for her next week. I live miles away from her & work full time, have a young son so feel a bit useless but at least I'm trying to get her the support she needs & doing what I can I suppose. Thank you x

[TheAuthor]

Hi EmmaA40

I am so genuinely sorry to read this and I sincerely hope that your mum is feeling as well as she possibly can be today? I have pasted you below a link to the FMA UK support group directory, so hopefully this will be useful in meeting other sufferers:

fmauk.org/contactsmenu/supp...

There is a Polymyalgia Rheumatica and Giant Cell Arteritis UK (PMRGCAuk) forum on HealthUnlocked, so I have also pasted you a link to this as this may also be useful to you:

healthunlocked.com/pmrgcauk

Most diagnoses of Fibromyalgia (but by no means all) come from a Rheumatologist, so it may help for your mum to ask for a referral to Rheumatology as well. I am not a doctor so I cannot really recommend medication. However, NHS Choices has a list of ''usual'' treatments for Fibromyalgia which you or your mum may wish to discuss with your mums GP? I have pasted this link below also:

nhs.uk/Conditions/Fibromyal...

On top of medication I attended Physiotherapy & Cognitive Behavourial Therapy which I found both of them useful. I want to sincerely wish your mum all the best of luck.

All my hopes and dreams for you

Ken

[EmmaA40 in reply to TheAuthor]

Thank you for your kind reply. I have printed everyone's thoughtful comments & will pass them to Mum, who will in turn pen a reply to you all which I will type for her next week. I live miles away from her & work full time, have a young son so feel a bit useless but at least I'm trying to get her the support she needs & doing what I can I suppose. Thank you x

[TheAuthor in reply to EmmaA40]

x

[EmmaA40]

Thank you everyone. Mum's a tough old bird (lol) but this seems to be putting her on the edge somewhat! I've managed to find a group literally in spitting distance from her home via Facebook, which we're over the moon about. I really appreciate you all taking the time to respond personally, & to Mum, it means a lot to know she's not alone. Subconsciously, it helps. Mum will read all your replies asa she can & when well, reply to you all. She doesn't own a computer, she only takes & makes calls & texts on her mobile, technophobe etc, lol. Thanks again! x