What's your experience

[Carmen1952]

I am in my sixties and have been diagnosed with fibromyalgia, polymyalgia and now told oops probably got that wrong. It looks like arthritis of some kind. I have been on so much medication at times it has changed my personality.

I the decided enough was enough and went into battle. I came off all the anti psychotic and epileptic medication. Plus the morphine patches. Just a slight medication overload. After three years I finally have a referral to a specialist.

At 65 I have in the last month gone from being really active digging my garden which is about an acre. Walking our Golden retriever about six miles a day, to hardly any mobility at all.

I struggle to stand and walk the pain in my joints is not good.

Having been a health and Social care professional I am a great believer in "if you don't use it you lose it".

But how much damage have I done if this is arthritis not a myalgia. It appears to me that once a label has been attached that's it. Plus my age as I am classed as geriatric care.

I am so angry and upset sorry I just need to put this out there. I am fed up with GP's not listening to me. Having the latest fad medication that is the wonder medication for everyone. It might brig diagnosed for the appropriate ailments. No X-rays or referring to specialist until you throw a real strop. Show really badly swollen joints and crawl into the surgery in so much pain tears stream down your face.

Is this just my experience or is this normal in today's society.

It takes a toll on my marriage as I have gone from a happy go lucky bubbly individual to a moody miserable angry monster. I am lucky I have the best husband who sits with me makes me comfortable, dries my tears and makes me laugh. Do the doctors see this how our lives have changed so much. Yes I know it is probably a flare up of some kind and could disappear. However my argument is that it should have been sorted out. Specialist seen as to what it is, appropriate pain management plan in place. When I asked for these you would have thought I was in a third world country not Scotland. Thank you for the opportunity to express how I feel. Maybe now I can settle into the day and stop being selfish about me. Just because I cannot cook the Christmas dinner or do what I used to. I should be thankful hubby is a chef and I have a dinner and people to share it with.

[Aishah50]

In a similar position at 53. Sick of every solution being a pill which alleviates, sometimes, symptoms but doesn’t deal with the cause. I’m usually very positive bur the last month has been horrendous. Couldn’t walk as I had pulled a muscle in my groin and my leg kept giving way. My right knee has a tear in the cartilage but I started getting problems with the left. It felt like it was tearing every time I moved it. Upshot I couldn’t walk at all apart from painful trips to the bathroom. I have never felt so down. You have a right to feel annoyed at the poor care you are receiving. The NHS is sadly not the same as it once was. It’s more like a conveyor belt. In and out as quickly as possible. I had my kidney removed in July and they asked me if I was ready to go home the day after the operation. You are right you are prolly in the middle of a flare but that still doesn’t mean that they shouldn’t provide you with services that can support you to manage those periods of intense flare ups. I do hope you get the support you need. Enjoy your day.

Aishah

[JacquiRo in reply to Aishah50]

Healing love and light x

[Carmen1952 in reply to Aishah50]

Thank you, I hope it improves for you as well. Onwards and upwardsx

[JacquiRo]

Dear Carmen

I can feel your anger, pain and frustration in your message.

Most of us have been down that road and I am still travelling it and sadly not getting better. This cold weather and our emotions really doesn't help our condition ..

Try not to be angry with how it is just aim it towards something constructive for yourself.... look at all natural things that can help.. I am sure some people will have some great wise words.

I am like you .. had it for years but still in agony and hoping to find something helpful..

I have my rants and very low days ... even yesterday crying all the way home.. but we have to stay positive for our own sanity.

Healing hugs to you x

[Mdaisy]

Welcome to FMAUK Community Carmen1952 !

You've found a great site where members share their experiences of Fibro and other common conditions in the hope it will help others. Many members report it to be a great online support network as we all learn to live with Fibromyalgia 24/7. So, I sincerely hope you find it helps you too

As a newbie, I see you have not locked this post to the community only so here is the information you need should you wish to do this, link below;

healthunlocked.com/fibromya...

I look forward to chatting with you around the community

Hope you are having a lovely xmas !

Emma

PS. You may like to check out our mother site fmauk.org

[uggycat]

hello Carmen I have arthritis as well as fibro, you can have all sorts of other illnesses which cause pain and still have fibro. with me there is no cure for the pain just to medicate it. l have travelled a long road of this medication that medication and hardly any medication, the landscape seems to constantly change except t for one thing the pain stays the same. Oh and by the way I am a young 68 and a half lol I have to say I have not found any agisim against me, if any thing I sometimes find being a women I get treated different. which is annoying. Hope you get help you need xxxx

[Carmen1952 in reply to uggycat]

I have had the privilege to work in health and Social care for most of my working life. I have a degree and various other qualifications. I will not let today's doctors, nurses or any other health or social professional treat me in a way that is not with dignity and respect.. I will always try to discuss without losing my temper. As once you have done this you are lost. However I will not accept a second rate system for others so why should I for me.

[Rose54]

Hi

Polymyalgia is a form of Arthritis unfortunately like Fibro their are no blood test that confirm the diagnose.

I went untreated for about 3 years told I had CFS was unable to get out of bed or even dress myself .

Many GPs are ignorant of treatment ,which is a course of Steroid tablets if you respond with 24 hours they then confirm your illness.

Other forms of Arthritis should be picked up by blood test or X Rays

Hope you get sorted out soon

[Carmen1952 in reply to Rose54]

I had a really bizarre reaction to the steroids unfortunately.

[Rose54 in reply to Carmen1952]

Hi Carmen1952

Know what you mean

I was unable to go out at first due to the anxiety they caused, brain fog ,sleepless nights ,hot sweats , irritable completely changed who I was.

However two years on things have improved

Do hope you find a answer soon .

[ShellyC23]

My mother is going through exactly the same at the moment but because she is sensitive to most medication she has to manage on cocodamol or paracetamol which doesn’t really help with the pain. She is so depressed she wants to die but anti depressants caused a bad reaction and she was admitted to hospital following a blackout. Luckily nothing broken except more of her confidance. She has mobility problems and has not left her flat on her own for about three years but now my sister and I have to force her to even come out with us for lunch. It’s heartbreaking as she was always a very strong independent woman. After losing my dad to cancer she insisted on staying in our family home all alone until we finally managed to convince her that sheltered accommodation would be best. She is safe there, no stairs and good friends around but we miss the mam we had. I’m worried that I can’t help her, I have multiple medical conditions myself including fibro so I understand to some extent how she feels yet she is very resistant to anything which may help. I get so frustrated at times and now I’m worried she may be developing dementia, or maybe it’s the fibro fog who knows but she appears to be vanishing before my eyes and I’m SO SCARED. She had her 78 Birthday this month.

Sorry for offloading - now I’ve got upset again and I’m supposed to be going away on holiday today. My sister will be around, and friends and my aunt but I’m really worried about leaving her 😫

[redmaple-5 in reply to ShellyC23]

Hi ShellyC23, You sound like you love your mam very much and do all you can for her. Going on holiday will help you recharge your batteries, you deserve it, have a lovely time. Xx

[Carmen1952 in reply to ShellyC23]

I am so sorry you are carrying this around on top of your own illness. Is she not receiving any input from Social Services or Mental Health Teams. Have a word with the manager of the complex see if there is a befriending service available. You can contact help the aged they can usually point you in the direction of befriended for mum. Why has she not got a care package to help her ask social services. It amazes me how many people battle for some basic help. It's not right xx