Understanding the pain of family members

[RED1224]

I have family members with fibromyalgia and hoped by coming onto this page, being part of the community. I could better understand what they are going through in order to better support them.

[Hidden]

Hi

Welcome to this wonderful forum of kind, caring, compassionate and supportive people. What a kind person you are wanting to help your family. I'm lucky that I too have a great support network of family, friends and of course everyone on here.

I'm in pain 24/7 due to this and many other conditions. My pain is everywhere, there are some days that I can't even get out of bed I'm in so much pain. Other forum members will say the same. Lack of sleep is another one, I have one hour or less sleep per night due to pain.

If you need more information, just ask and we will help you. Take care Lynne

[RED1224 in reply to Hidden]

They are such a lovely member of our family, I think they often suffer in silence. But as we do not see them that often they can put on a brave face for family gatherings. But it be nice to talk to people in this community in case one day they need some support.

Thank you for the kind words and welcome message.

[Dizzytwo]

Hello RED, warm welcome wishes to our group 🤗

I am sorry you have family members with this this kind of illness. I think it's wonderful of you to take the time to try and not only help your family but educate yourself on what is a very head scratching and for some a very disiblitating illness. Good for you for doing that 👏👏👏

[Paula-38 in reply to Dizzytwo]

I used to be on this forum a few years ago when I was trying to get help for my mum who had suffered from a really underactive thyroid, I think might be a result of her Scarlet fever she had when she was litte but I woukdn't know.

However in turn this led to high cholesterol, so then she was taking both Levothyroxine and Simvastatin together but in the longer term we found out that they did not mix, and I was seriously worries at the time. Eventually over a period of years she developed Subcortical Vascular Dementia and she passed away almosr a year and a half ago. 😡

If anyone wants to know anything then they can feel free to ask me anything anytime. I like to think I can be of some help to others in similar situations or whatever. I was also on the dementia community and went to allsorts of websites to help my dad to help my mum out. I think that the thyroid has a lot ti answer for when it comes to pains because as my mums thyroid deteriorated, she started getting these strange tingling sensations in her limbs, and she often said she ft as though someone was pouring water all over her which at the time we didn't understand, then her immune system got mucg weaker, so then she was fkrever picking up colds, flu etc. But it was when she was lying in the same position and couldn't move, it was then we knew these were the tell-tale signs that something was not right, this went on for 4 months, and then the memory clinic were involved and a CPN specializing in the elderly came out to see her, because she had already had two falls, and had so many near-misses. Then they auspected she had Alzheimers at first but was put on a waiting list to see the consultant 5 months during which time, she had deteriorated rapidly. More about that next time.

[Dizzytwo in reply to Paula-38]

Hi there, thank you for sharing this post. I am sorry for your loss. I do hope your mum didn't suffer too much and received all the care she needed. I'm not sure how many of our members suffer with the kind of illness your mum suffered with. But if they do or have a family member dealing with dementia as well as fibro/ ME it may be of help to them. Take care and I hope you have a nice week

[Paula-38 in reply to Dizzytwo]

Well incase they may have a family member with a thyroid ailment and/or dementia. You see I have learnt quite a bit about hoe the thyroid works snd what it can do, if its not working properly and what it can lead to if untreated which is the hormone that fibromyalgia can affect. I looked it up throughout my mum's journey with severe thyroid problems, although she was not diagnosed with fibromyalgia, I discovered that must have had it because I saw all her symptoms on thyroiduk.org.

I also met someone who had many years ago in 1997 at an OCD unit where I was getting CBT CFS/ME and she was confined to bed , waa very frail ans she was in her 20's & 30'severything She has had it for 20 years but now she has been living with her partner for the last couple of years, she taught me a lot about her illness and everything so I am in a pisition to help other people out.

I myself son't have those ailments though but the say that 'knowledge os power'. Hope this helps.

[Paula-38]

Hi RED1224,

I have a couple of websites you can visit. britishthyroidfoundation.or...

thyroiduk.org.uk , you can navigate the website they have a section on fibromyalgia and other sections that you are intersted in.

and there is also

meassociation.org.uk/ information and support for Local Support Groups I had a good look for you and there are a few in Oxfordshire so you can have a look and tell me what you think of them.

Best of luck!!!😊

[Paula-38]

I meant to say I met someone who had CFS/ME in 1997 where I was getting CBT for my OCD, I'm sorry it came out all mixed up.