pain from Fibro

livonia · July 2018

hello I am new here. I am struggling with pain from fiibromyalgia. Nothing seems to work including the drugs my gp has given me. I am have severe anxiety. how do others cope? Do you find that a lot of people don't understand. I feel that my friends are getting fed up of me which is isolating me. I have tried telling them to google my condition. Another friend thinks all my problems will go when i go back to work - she said you need to get a job. makes me so sad.

Topkitten · July 2018

Welcome @livonia . It is difficult when the people around us cannot see what is wrong as so many people assume that poor health shows on the surface. Of course that really isn't true and it does sadden all of us when those people stop providing the support that would help. There is no cure for fibro and many other invisible problems and life becomes just a way to manage the pain issues. Also it is a progressive condition for most people and will worsen.

I would suggest you stop trying to prove to them you are ill and simply move on to managing the issues. One way forward is to get your GP to refer you to the Pain Clinic as they will provide you with ways to continue to manage your problems. If those around you are true friends they will rally round and support you, if not then you are better off without them. Learn coping mechanisms and ways to do things that are difficult without letting them stop you dead. It's a long road but many go along it and find ways to cope but what works for one will not always work for you so remember to listen and to try but to be prepared to adapt others ideas to things more relevant to yourself.

TK

debbiedo49 · July 2018

I totally understand where you are coming from. I was recently diagnosed with fibro after years of chronic pain following a trauma. I already had periods of poor mental health but this time it led to symptoms of ptsd , depression, anxiety, agorophobia and panic disorder. Friends and family would say to me go back to work or do stuff that you normally would and you will be fine. Now I trust literally no one with my health and well being except close family. I’ve felt like a fake to some people for years as fibro is a silent illness. Even people I know with fibro aren’t supportive. I can now understand why as this condition can be all consuming and you have to put yourself first. It’s taken me years to get to today where I can do a tiny amount of hours per week to manage my health and benefit from being in a job I enjoy. I have had lots of support from local charitable mental health organisations over the years when I’ve self referred. It can make a difference when you meet other people who can empathise. But I haven’t found anything local for fibro and I think that’s a shame. I can’t travel independently and I try to engage with local organisations so I can walk there and not get as anxious. It’s very restricting in what I can do but it’s better than nothing. That’s why forums like this are so necessary and I really appreciate having this type of online support. If you look around the site perhaps type in fibro in the search you will find various posts that might appeal to you. Also feel free to message me and I will reply when I’m online if you want to. Take Care .

Shadowdragon · July 2018

Like @Topkitten and @debbiedo49 I am in exact same boat been three years now and friends have slowly dropped off, I already suffered from anxiety/agoraphobia/PTSD, its just got worst and worst now, the Fibro alone is restricting what I can do, and on top of that the mental health problems just makes it worst.

So all I can say is that your not alone, everyone thinks i just need to pull myself together, start going out etc...get a job yeah right who wouldn't love there career back I would for one! Even my wife has had enough of me i think, things are difficult there too. But we havent had that discussion yet!! But its coming.

I dont post much on the forums more a reader just saw your post and the replies and had to say I agree.

Chloe_Scope · July 2018

Hi @livonia and welcome to the community! Thank you for taking the time to share this with us and I am sure many community members will be able to relate! I am sorry to hear that you are struggling, the community can try and support you during this time. Hope you are having a good day, if you need anything then please be in touch!

drb78 · August 2018

I too have Fibro and struggle with a complex medical history, over the last 12 years I have seen my friends disappear family grow distant, however, I know those who really care and truely love me no matter what so I focus on those important people. All the others were not real friends and did not care or love me in the first place. I have Fibro, but I am not Fibro, I'm still me.

Pippa_Alumni · August 2018

Beautifully put, @drb78!

[Deleted User] · August 2018

@drb78 ❤️

michelle_w1 · August 2018

I try to use a lots of humour
I describe my pain as todays daily torture and just mention the worst pain I have.
i also tell people to compare my fatigue to a phone if you use it too much too quick it loses emergy snd takes ages to rechcharge.
so I say things like i have only got 10% charge at the moment youll have to wait til I recharge.

debbiedo49 · August 2018

I do that to too I say my battery is running low lol. Have just heated up a fleece blanket in the dryer to comfort my painful body and recuperating on the sofa after tackling housework. Ugh!

Misscleo · August 2018

Iv also had fobro.for years and yes friends and family cant be bothered.
There will always one who says "cant you walk any faster"
Iv starting reminding them they may get fibro themselves

Brett_Babs · September 2018

My wife got tested for Fibromyalgia and scored 18 on the pain point test..I've been through a work accident,cancer,spinal collapse,life threatening anaphylaxis to both local and general anesthetics.
My wife helped me through it all and now it's my turn.
She has hypermobility in both arms and legs, Chronic pain all over (waiting for the pain clinic ) severe asthma(verging bad COPD, high blood presure ,her thyroid is going ape swelling to the point of chocking(awaiting c.t. or MRI scan)
Got a PIP interview in a week or so....
And that's not even all of it....
No family support, no friends to help...surprising how fast they disappear!!
Fun Times ahead...

Pippa_Alumni · September 2018

Thanks for sharing this with us @Brett_Babs. I hope you find support in being a part of our community among others who understand- and if we can be of any assistance, please do let us know.

debbiedo49 · September 2018

I was just at a physio assessment and they said I can’t help you with fibro it’s a mystery to us. But I can help you with one symptom in one area. Typical NHS! Yes I will take any help please.

Peridot · September 2018

Hi everyone!

While it's very sad to hear, it's also kind of comforting to hear that I'm not the only one to lose my friends to this illness. And even though what little family I have have been fantastic, I still feel like they still don't 100% understand what life is like for me.
When it comes to explaining my illness to those around me, I tend to use the Spoon Theory to explain my fatigue, and the extra energy sapped by doing things in pain. Best (quick) way I've found so far to explain to those lucky enough to not know what chronic illness is like. I have also recently found this letter for people who ask you about fibromyalgia. Maybe these will help you explain to friends? Maybe help them understand a little better?

It was recommended that I use this site to connect with other people in my situation, who I can talk about my illnesses to and will know exactly what I mean.

Also looking for tips about how to manage my pain. With this cooler weather and other stress in my life, my pain levels have spiked this last week like I have never experienced before! I love @debbiedo49 's idea of heated blankets! No idea why I've never thought of that before. Anyone else have any other methods that work for them on those super bad days?

Hoping you are all having good days wherever you are

JulestheBat · September 2018

Heyy,
Ive got Fibro, friends have went since the illness started but screw em

I really focus on my pets, my partner and interests. Its really important to find an interest. It makes up for the lack of social thingys.
Most of my friends Ive made are online. That keeps mw going.
CBD is amazing, if you can get it in its natrual form thats all the better

Lavender and magensium spray works on my neuropathic pain in my feet. Theres some pain management resources online. The pacing stuff is good ( though Ive found the pain management sessions on the NHS rather useless).
Fibromyalgia sucks badly, its taken away so much life for me. And Ive kinda gone through a grieving process about the whole thing, about the life I couldve had. Now I focus on the good stuff in my life only ?
I hope everyones ok and having a pain free day

sirenx · September 2018

Hello
I am in the same situation as you , It is awful. Dealing with the pain is bad enough without the panic attacks and anxiety and depression. I have lost all of my friends and family and it is all very isolating . We need groups and forums definitely . Love and peace to all .

maud · September 2018

Hello
I have just joined. I have been diagnosed variously with Lyme Disease (definitely had it twice when working in Africa for many years), ME, CFS and fibromyalgia, ‘it’s all in your head dear’.
I am really struggling with chronic pain, all over my body. On a good day I can walk for about 10 minutes until the pain stops me. On a bad day I struggle to get out of bed.
I’ve given up on the NHS. Too unwell to attend pain clinic. Physio made me much worse as they insisted I ‘work through the pain’. GP treats me like a junkie for taking cocodamol.
I am retired, don’t think I will ever get better. Luckily have a husband but feel guilty about how much he has to do for me.
I have tried CBD which initially helped but doesn’t seem to any more despite advice from a very good fb group.
Sorry I sound negative but going through a very bad flare and it is so difficult to feel positive when pain is dominating my life and I can’t even recognise the person I have become.

debbiedo49 · September 2018

Feel your pain fellow fibromyalgia warrior

Peridot · September 2018

I'm really sorry to hear that. I totally understand how hard it is to stay positive during a bad flare up. I have just come out of a bad one, and I just completely gave up with everything. Stopped caring for myself, distanced myself from my family - I just had no energy or patience for anything. And the pain was intolerable!
The one thing that worked for me during that God awful period was CBD in a vape pen that I got off the internet. I used to use a dropper and put it under my tongue, but like you it stopped working pretty quickly. But this CBD pen was an absolute lifesaver for me! Worked so much better on me than the dropper and works out cheaper too

Started off on the 300mg strength, and really helped me out, and I'd tried pretty much everything to ease my symptoms with varying degrees of success haha. Can give you the site name if you want it. Just let me know

I have also found mindfulness to be very helpful, but didn't have the patience for it this flare up lol

I really hope you start feeling better soon. Sad to hear what a bad time you're having, but it sounds like you have a lovely supportive husband which is fab! Sometimes one person who understands what you're going through can make all the difference.

Sending gentle hugs to all!

maud · September 2018

Thank you Peridot and glad the vape pen is helping you.
i have been thinking about vaping as you don’t need to leave a gap between it and other Meds so info about what you are using would be so helpful.

pain from Fibro

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