Feel so alone tired and in pain - Fibromyalgia Acti...

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Feel so alone tired and in pain

55lindylou profile image
16 Replies

Hi I was diagnosed I 1996 with fibromyalgia, have seen rhumatologists but they where no help. One told me to start drinking mint tea and to lose weight. I could have cried when I came out of the appointment, felt so down and useless. At the moment I'm waking up with awful neck ache, backache face ache every ache ha ha. I have a lovely family but they don't understand because I don't look ill. I'm 60 years old but somedays feel 80. Oh I'm so sorry to be moaning on and on, thanks for letting me ramble on

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55lindylou profile image
55lindylou
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16 Replies
phlebo123 profile image
phlebo123

Hello Lindy Lou,

First of all you are definitely not alone.... there are lots of us here!

Sometimes it is good to have a little moan, especially to people who know exactly where you are coming from!!

Sometimes it is good to "get it all off your chest"! Hope your "little rambling" has helped you.

I have also had a "bad" experience with a Rheumatologist, (in fact I did burst into tears after his cruel comments!) but unless they themselves have this condition they can provide little useful advice apart from painkillers. I think it must be very difficult for them to comprehend and have no knowledge of how to help us. In fact, I believe we ourselves have a far greater understanding than most doctors. Xxxxx

55lindylou profile image
55lindylou in reply to phlebo123

Thank you for your reply phlebo123, it really makes a difference people replying. Yes I know what you mean about people and doctors not understanding how you feel, I sometimes out on a mask on when I go out. Also if someone asks me how I feel, I just say I'm fine. Think I'm having one of those negative days today, does anyone else have those. Hopefully I'll wake up tomorrow, as bright as a button !!!! Xxx

phlebo123 profile image
phlebo123 in reply to 55lindylou

I do exactly the same when I go out... put on my "positive mask" ... when anyone asks how I am, I always reply "I am doing ok thanks".... simply because I don't have the energy to try and explain how I am really feeling (and I think people you meet are just being polite and don't really want to hear about your invisible aches and pains!) Hope you feel better tomorrow xxx

Dad24 profile image
Dad24 in reply to phlebo123

no one understands unless they have it no painkillers workhad liquid morphine but the dr sayed put weight on so don't want that so went on patches tue been better on them taking edge off pain hope u bit better today xx

naturalnikki profile image
naturalnikki

Negative days are a common scene in my life unfortunately. But :) I try to not let the darkness overpower the light in my life.

I used to never say anything to my husband but after his request, I have started opening up about when and where I hurt. It seems to be helping him understand more and he helps out more.

I hate complaining but he sees how hard I work or try to work and now he understands(or tries to understand) the pain I am doing it in.

Please don't worry about moaning, we have to get it out and it helps to talk about it. I'm glad you did. You are not alone, though I feel that feeling a lot and understand. But know you aren't alone.

Have a wonderful day. I hope you feel better soon.

Hi

It's hard, but we can get through it together and that's why posting on here helps. We're here to give each other support.

Have you tried soaking in a bath with Epsom salts or magnesium oil spray. The magnesium in both is supposed to help muscle spasms.

I use Volterol gel on my neck most days, but don't take ibuprofen with it.

Hot water bottles help too.

There's also hemp oil tabs taht might help you also.

Good luck and best wishes.

55lindylou profile image
55lindylou

Thank you so much, I really appreciate your comments. It's nice to know other people feel the same, that's in a good way!!!! The tiredness and pain feels as if it's overwhelming at times, that's when the black thoughts start.

Thanks xxxx

peck profile image
peck

Hi, Sorry your having such a bad time.You are welcome to come on here on moan all you want!! Wishing you the very best. Peck.🐤

55lindylou profile image
55lindylou

Thank you sooooo much for your encouraging comments, it has really helped knowing I'm not alone in feeling this way. You are all amazing xxxx

Steve49 profile image
Steve49

Hi.

Don't worry about going on & on that's what we are here for !!!!!

Yes since my Stroke in 1998 people have assumed that I look well so I must be fine!!!

If only !!!!!

You carry on rambling if it makes you feel better.

Please ramble to me if that will help !!!

Steve

55lindylou profile image
55lindylou

Oh thanks Steve 49, I feel so much better reading everyone's comments it has really given me a lift. Thanks again

Steve49 profile image
Steve49

Hi.

I'm so happy that this helps you!!!

That's what we are here for to support each other.

Please let me know if I can help you further???

Steve.

TheAuthor profile image
TheAuthor

Hi 55lindylou

I am so genuinely sorry to read this my friend, and I sincerely hope that your pain eases for you soon. I was wondering if there was a different GP at your surgery whom you could talk too about how you are feeling? They may be able to tweak your medication and see if this helps with your pain?

I want to sincerely wish you all the best of luck, and please take care of yourself.

All my hopes and dreams for you

Ken

55lindylou profile image
55lindylou

Hi Ken

Thank you for your comments, I really appreciate them. Feeling better this morning, apart from a stiff painful neck and upper back. Think it's because I slept using 2 pillows last night, been suffering with acid refux so thought if I was higher sleeping it would help.!!!

I'm not on any medication for my fibromyalgia, just ramipril, sertraline, lansoprazole and vitamin d. I just take paracetamol and ibuprofen when it's really bad, some people have suggested Epsom salt baths and hemp oil. Is there any other things I could try

Thanks 55 Lindylou

fenbadger profile image
fenbadger in reply to 55lindylou

That's good stuff. I'm on vit D for fibro and whether or not it really works, pain levels dropped and I've only had minor flares since I started it. Heat pads may help. I have a shoulder/neck heat pad - my worst areas and put a hot water bottle on my legs at times. It provides relief but only while its on.

The only thing I can say about medics is try to listen to the important stuff and ignore the rest. They can be right idiots at times for a "caring" profession. Luckily for me my gp is ok. Being basically down will only exacerbate the pain/stress. There have been a couple of posts recently about how do you explain to family friends and doctors how it really feels. This is no individual comfort but shows how we're not alone.

Neither are you superfluous. If you are , then I am, we're about the same age. Hang on in there please. It can get better. It certainly takes time. whatever tactics you use, the idea is they at least slow the deterioration.

Big badgery hugs :)

55lindylou profile image
55lindylou

Hi fenbadger

Thank you it does make difference hearing from people, and about their experiences. I think trying to stay positive is a help, but difficult at times. I have learnt over the time, when doing housework or any activities is to try and break the tasks down. I try to pace myself and have lots of rest breaks, some days I just can't be bothered doing anything. Then I start to feel guilty and depressed, does anyone else feel like this x

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