Fibromyalgia 10 times worse

[Kazzza1976]

Hi everyone I was diagnosed with fibromialgia around 2 years ago and I have had a few flare ups. Can stress cause fibromylgia to flare up ? I'm under alot of stress ATM 😪. My dad has just been diagnosed with dementia and is in hospital and my mum is not good health wise either. I am In alot of pain everyday and unsure whether stress is causing it

[Dizzytwo Moderator]

Hi there, the short answer is yes. Imo stress is one of the biggest contributors to pain. That can be fibromyalgia or any other type of pain.

Momo

[Tisme72]

Absolutely 100%! Stress is to be avoided as best you can, it’s probably the worst thing you can have if you have Fibro, I try to avoid it like the plague but obviously there are occasions when it seems impossible.

Is there nobody else who can share the stress with you or try to reassure you about the situation? It sounds like your Dad is in the best place for the time being and with your Mom she’s going to be upset as well, maybe you could console each other. Are they aware of your condition and do they understand how it affects you? If not you have to get through to them about it but have to be careful about how you approach it. I have problems with my family about it so I can understand. Hope you can reduce your stress level, it will help your body and mind.

[Kazzza1976 in reply to Tisme72]

Hi yes family are well aware I have fibromialgia but we are a small family. I'm here with mum as dad's diagnosis has shattered my mum which is understandable and mum is bad on her feet now.i don't do much here such as heavy lifting or anything like that as mum has carers coming in .mum still wants me here for her for emotional support more than anything else. I'm so upset and feel alone. I wish I could change things. Dad called me from hospital phone and asked me to call him a taxi and told me he is by his mums house even though he is in hospital.its heartbreaking 💔 and a cruel disease. I'm not sleeping well and totally lost my appetite

[Diy2 in reply to Kazzza1976]

Hi, l can only go on my own experience. My mum died suddenly in 2015 and my brother 12 months later in 2016. My dad had just been diagnosed with Alzeimers. It was at this time l started suffering from aches & pains all over my body. I didn't know anything about fibromyalgia until many years later. Although l still had a sister & brother the majority of my dad's care fell on me. He did so well until 2019 he deteriorated and then it became really tough, sadly he passed away early 2020. I had been to the doctors endless times , had blood tests, scans etc, all clear. Eventually September last year a different doctor suggested that l was suffering from fibromyalgia and l now have a rheumatology appointment in April. After taking to the doctor in length it is undoubtedly all of the stress from those years that kick started it in the first place.

[Southport-beach]

Hi, yes, in my case definitely. I try to keep my stress levels as low as possible (easier said than done!). I also try to find time to practice a bit of yoga to calming music and I try to do 10 minutes of meditation/mindfulness each day. To do this I use the Calm App which talks me through calming breathing exercises and helps me to relax tense muscles and calm my racing mind down. I had never thought meditation would be for me but I feel so much better after allowing myself time to do it.

My Dad had dementia before his death 13 yrs ago and my Mum died from asbestosis 8 years ago. So I fully understand the stress of coping with elderly parents. Please take care of yourself. Lots of virtual hugs.

[Kazzza1976 in reply to Southport-beach]

Thank-you I wish I could keep my stress levels low right now they are through the roof. Dad has been in hospital around 5 weeks and has deteriated. We waiting to be allocated a social worker then we can have a meeting. Dad is seeing the mental health team to see what dementia he has. Its either vascular or lewybodys. Very upsetting and stressful. Take care big hugs

[Southport-beach in reply to Kazzza1976]

Having been through it, I fully understand how stressful and upsetting it is trying to cope with slowly losing a family member to dementia in addition to trying to get the right support for them. Sadly, in a lot of areas in this country, there is patchy support available for this terrible disease. My Dad had Vascular Dementia and both my Mum & Gran had Alzheimers.....

If you haven't already seen it, there is a lot of information on the Alheimers Society website about dementia, how to get support etc. alzheimers.org.uk/about-dem...

In the meantime, please look after yourself as best you can. Sending virtual hugs.

[Uellow22]

Oh darling Kazza1976,

You poor love.

Yes it can & does impact on my fibromyalgia completely. Sadly, I too am in what sounds like the exact same position.

I live in France & my dad too was only last week diagnosed with vascular dementia and my mum has stage 4 lung cancer & was diagnosed 2 years ago.

Sadly the burden for me is to have to take them to all their medical appointments and translate for the majority of them.

If you are feeling like me Kazzza, you will be feeling an almighty host of emotions for both of your parents, fear, understanding how thier health & its future impact on yourself. There is then of course how you are feeling and still getting your head around your diagnosis , how to manage it etc.

I have found that taking antidepressants Venlafaxine very helpful in terms of being rational and more in the moment with an enormous amount of less brain fog. I wonder are you taking anything like that.

Do you have siblings or family members that you can talk to and ask for help? I don't but I am waiting for an appointment from the Alezhiemers Association to see how we can get some support.

My parents know about my health but don't really get it and are sooooooo caught up, understandably with their health that it inadvertently is side stepped.

If you would like to chat one to one I would be happy to sweetheart.

I really feel for you and UNDERSTAND what you are going through.

HUGE HUGS 🫂 and heaps of courage sent your way.

Yellow 💛

[Kazzza1976 in reply to Uellow22]

Hi yes I'm feeling exactly like you right now and trying to stay strong for mum through all this. Parents aware I have fibromialgia but they don't understand what It is. I'm more here for emotional support for my mum its hard as I'm feeling very low and helpless myself. Then we have the worry because this has happened so quick dad lacks capacity. We have no power of attorney in place and now gave to apply for court order which is timely and very costly. Can not get legal aid for this. Prices with solicitor start from 2000 pounds .everything is just a worry right now ans fear of the unknown.there is a safe guarding in place around my mum as dad thinks mum has 5 fellas here and sometimes is aggressive not towards mum but aggressive in the hospital.he also has a dols on him as well. Joints are so sore probably with stress. Yes I have family but we are a small family. My kids work back in liverpool so cannot take time off as and when they need to. I'm in Wales with mum where parents live and handy to the hospital .take care

[marguLIS in reply to Kazzza1976]

Bless you both, I'm in a similar position but thought this may help Kazzza situation. You don't have to have power of attorney. If you're parent has dementia and can't make a sound descion you can't be their attorney. Same if they refuse. You can apply to the court of protection to be a deputy but have limited powers. You don't need a solicitor for this. There are legal companies that help you with all the paperwork and they charge around £400. It can take between 4-6 months though. If you don't feel able to do this , you can ask social services to go to court and ask for a solicitor to act on your parents behalf. This is all from my own experience, still not sorted but my mum is now safe and mostly happy in a lovely care home. It will be paid for out of her money when she passes if there is still no deputy. If there is no money then health or social services pay for their care. You don't pay for them.

Please try not to worry, I know how difficult that is , I've had many sleepless nights and awful days and it's got me no where except feeling more ill. Most important is to get social services involved and get some help.

If you think I can help with anything just let me know. Gentle hugs to you and be kind to yourself. X

[Bertiemum]

I am a lot worse when stressed out, which is most of the time at present. My husband is in a nursing home with late stage dementia, and is now in bed all the time and unable to do anything for himself. He can hardly communicate verbally and does not understand what is being said to him. I go to see him at least 3 times a week and it is heartbreaking to see him like this.

To make matters worse I am in a constant battle with my local Adult Social Care ( or more accurately Adult Social Don’t Care) over my husband’s care, which they are supposed to completely fund due to his particular condition, but refuse to do so because I got him into a nursing home in a neighbouring county, rather than the county where I live. All because they could not find anywhere that was suitable for him. Unbelievably ASC tried to place him in a care home which had no registered nurses, whereas his care plan clearly states that he needs access 24/7 to a registered nurse, and all because of the extra cost. I do not think he would still be alive without the wonderful nursing care he receives in the home where he is now.

Sorry for the rant but it is good to get it off my chest from time to time, and this is the reason why my fibromyalgia has flared up so badly.

My irritable bowel is worse, the tingling and pins and needles in my legs and feet make it difficult to get to sleep, my brain keeps‘shutting down’ and I can’t think straight. (Embarrassing- people must think I am in the early stage of dementia!). I get crashing headaches and by the end of the day am exhausted. That is what stress is doing to me!

Try to keep strong. You are not alone.

❤️🙏💕xxx

[marguLIS in reply to Bertiemum]

Hi Bertiemum, sorry you're having such a hard time. With Social services it's all about funding and who pays for it. When you cross boundaries they hold their hands up in horror and say they can't pay. Shocking. Have you tried the Local Government social services ombudsman? Might be worth a try, and won't do any harm. Sometimes a whiff of bad publicity is all you need. Good luck and gentle hugs to you. X

[Bertiemum in reply to marguLIS]

Thank you! I have tried the Ombudsman but they decided that the County Council were perfectly within their rights to place my husband in a care home with no nursing, despite the fact that the care plan written up by the Council’s own psychiatrist and social workers clearly stated that dementia nursing was required I.e. he needed to be in a home with permanent registered nurses. Under the mental health and care acts, the Council has a legal obligation to pay all of my husband’s nursing home fees, but I am forced to pay a top up because they flatly refused to pay up in total.

The trouble with all these Authorities is that they are bigger than one individual fighting them, and just bully you into submission. I should give up the fight for the sake of my health, but somehow I just can’t let them win.

Thank you for your kind words. ❤️❤️

[marguLIS in reply to Bertiemum]

Btw, I live in wales too. x

[Midori]

Hi Kazza,

Unfortunately, yes, Stress is one of the main causes of flareups, in my opinion; it jangles all your nerves, Sorry you are feeling like this, but is there no help from Social Services?

Might be a thought to enquire of your local council.

Cheers, Midori

[Kazzza1976 in reply to Midori]

Hi yes we have help from social services we just waiting for dad to be allocated a social worker which should hopefully be a few weeks. I haven't been feeling well for days and had an answer last night. I took myself to and e last night and tested positive for covid. I wondered what was happening to me and didn't know why I have been feeling so bad. Now I feel guilty that I can't go and visit my dad in hospital until this has cleared up. Always worried about something 😕

[marguLIS]

Sorry to hear that. You can't appeal but if any info was incorrect or left out of your original care plan or application to the ombudsman you can ask for a review.

Failing that, you could ask advice from solicitors who deal with claims for incorrect charges for care.

Was your Dad in hospital then transfered to the care home? It's a long shot but you could ask his hospital consultant to write a letter for you. You could ask social services to look again for suitable placement in your area, or last resort would be a judicial review. Just depends how far you want to go, and if you're well enough to deal with it all.

Disgraceful that you have to fight for what is rightfully his.

I wish you and your family all the very best.

[Yassytina FMA UK Volunteer]

Hello, sorry too read about your parents which is very worrying for you, for me personally if anything stressses me out I normally know by the intense aches and then sheer tiredness , I hope you have some family members who can help you and not do this all on your own, sending my best wishes too you x

[Kazzza1976 in reply to Yassytina]

Hi I tested positive for covid lad night which is why I have been feeling very ill. Didn't even know I had it. I put it down to stress. Doctor told me I can still go for a walk with a mask on he said its not like it used to be with all the lock downs , I won't be going out until I'm clear anyway didn't know they so relaxed about it now. Just won't be able to visit dad in hospital x

[Yassytina FMA UK Volunteer in reply to Kazzza1976]

take care hope it does not hang around many days x

[Uellow22]

Hi Kazzza,

Oh no....not Covid on top, nightmare for you.

I wish you ALL the luck for this almighty episode in your life & truly hope you soon receive all the support needed.

HUGE HUGS xxxxx