Acceptance?

[nellie_deany]

I have been really struggling with what seems a never ending flare at the moment. My pain, fatigue is overwhelming and I feel like I could sleep forever. My mental health has also taken a hit as I struggle with acceptance of living with Fibromyalgia. I grieve for my old life and the old me before this condition took over. I take regular pain relief and duloxetine 60mg but this does not seem to help. I have even been contemplating using a mobility aid something that to be honest fills me with fear and anxiety. Should I just accept that this is the my life and try to make the most of it or should I continue on this daily fight to reclaim my old life? Sending gentle hugs to all 💜

[Welshcatlady]

I'm so sorry that you feel so down at the moment, do you have family or a close friend that you can talk to and explain how you are feeling? Tell them exactly what you have written on here, sometimes it makes you feel better just talking to someone. Maybe you could make an appointment to see your GP and tell him how you feel.

As for using a mobility aid - if you feel you need one get it. I used to walk with a stick and my husband had a rollator, he was always telling me that I should buy one, but I felt embarrassed about using one, definitely didn't want friends seeing me using one. However, I had to venture out one day after it had been snowing and I took my stick, I didn't get very far when I had to give up, I knew that I wouldn't be able to carry some shopping back home using the stick in such icy conditions. So I went back home and got my husband's rollator out and used that, it was so much easier than using the stick. That was the push I needed to buy one for myself. I use it now without any qualms about anyone seeing me!

I think that if you can accept that this is your life now, and not dwell on trying to reclaim your old self and life, you will start to feel better about yourself.

Gentle hugs back to you too. 🤗

[nellie_deany in reply to Welshcatlady]

thank you 💜

[Trish04]

Hello NellieThank you for sharing how you are feeling at the moment, this resonates with me I was asking myself the same questions earlier this year.

Have you tried a referral to a pain clinic? They have a team of healthcare professionals that provide physio and psychotherapy to help you better understand the condition if you are open to it, they support your mental health working with thoughts such as your reaction to the symptoms, in order to reduce medication and live a life in line with what you value most.

I have not been able to visit the clinic myself as it is a residential four week course in London, however, my local physio worked at the clinic for over ten years and now semi retired she helped me enormously with a better understanding on how the way we think and feel has a direct affect on our nervous system. She advised a follow up with a psychotherapist which I am now doing and have found a significant reduction in symptoms, like anything it's a working progress so I am not about to suggest a miracle cure! But it has turned around my relationship to the condition to a more positive one and I'm back in control.

I still get flare ups but they are not as severe or for as long, that's a win for me! Next step is trying to incorporate some exercise such as yoga or swimming so fingers crossed🤞

We all approach this condition in our own way. I wanted to share my experience with you as for me this has been a positive way out of the sinkhole I found myself in for the last few years, grieving for a life I used to have and wondering how I could afford a mobility scooter....I now feel completely understood and supported by professionals that understand an approach that for some may lead to a more enjoyable life experience with an improvement or recovery of the condition with no or little drug use.

I hope this provides another perspective and you find your way through these difficult feelings.

Theresa

[nellie_deany in reply to Trish04]

Unfortunately in my area the pain clinic does not see patients with Fibromyalgia 😢

[SlowHorse]

In my own experience, when I stopped trying to get back to where I was before I got ill with this and accepted this is where I am now, I did start to feel a lot better. I think this was because I was freeing up mental capacity which was overloading me and contributing to the flare up state. Mental overload is also a big trigger for me, and if it is for you and others too, it will be good to try and let go of some of the anguish that comes with these flare up as this will give you that bit more mental capacity to deal with and start healing.

[nellie_deany in reply to SlowHorse]

This is exactly what I need to do. I just need to let go which is proving harder than expected 💜

[RustyOBear]

Well, we’re all familiar with that grieving and it’s good to allow that space to be expressed. Then shift your perspective a tiny bit and it’s surprising how this can alter the way you feel.

The first thing to ditch is the idea that Fibromyalgia, or indeed any illness, is something you have to fight or battle. What you need is some compassion and kindness towards yourself. I think a lot of us have difficulty accepting our condition which is understandable, but accepting is not giving in or giving up. In fact by not wasting your limited energy on pushing yourself you can actually use it on something you can get enjoyment from.

The mistake we can make is seeing the use of aids as proof we are incapable , actually they are the very things that help us to retain our abilities, that allow us to keep functioning albeit in a different way.

On days where my balance is off I need to take a stick with me. So I chose to use a walking pole instead of a walking stick as it’s got a positive association with health.

[nellie_deany in reply to RustyOBear]

Thank you for your kind words they mean so much 💜

[Sleepynoggin]

I totally understand how you feel. I too wanted, still want my old life back. Everyone kept telling me that you have to find your 'new normal ' I don't like that expression, I don't even know what it really means let alone what it looks like. To me my new normal was a life of pain and restrictions. I have learnt that (and this is just my experience everyone is different) I needed to grieve the life I had, just like you would grieve the loss of a loved one. It takes time. You go through stages. Sadness, anger, anxiety, depression......

I found that CBT therapy really helped me. I self referred online to the Wellbeing hub. They listened to me and helped me to move forward. I have just been discharged today.

As for disability aids I hear you loud and clear. Initially I thought the embarrassment would crush me, even though I needed them. My pride got in the way. Over the last two years I have gone from just using a stick to accepting that I also need my wheelchair at times indoors I have a wet room and just had a stairlift put in. I applied for a grant. Now I try and look at my life as I'm holding on to my independence and freedom as tight as possible and it nolonger matters what other people think. Or more honestly what I think other people think. As hard as it is, be kind to yourself and stop blaming yourself for not being who you were. You are still the same wonderful person you've always been. And inorder to keep going ,a bit of help or an aid to help you doesn't change anything. We judge ourselves much harsher than the people we love do.

Stay strong.

Self compassion.

Kindness to self.

You've got this.

X

[nellie_deany in reply to Sleepynoggin]

Hi Sleepynoggin ( love that username) the hardest thing is that I am a nurse and you would think that working in healthcare would be the safest space to talk. I find myself not talking about how I am at all. I can imagine if I walking into work using a walking stick or pole people would stare and talk. Thank you for you kind words they mean a lot 💜

[Positive-ish]

I think your feelings and thoughts will resonate with many in the community.

I am in my early 40s, and before Easter decided that I needed a mobility aid. I decided that I could accept the use of walking poles as mentally able people use them, so I would not feel so frail! I then decided to invest in some pacer poles, blooming expensive but I thought, these are going to be used and for a long time. So glad I did, they have made such a difference, a lot less pain when walking, and when I am flaring I use them to go up and down steps at home and work, such a help! Don't get me wrong, I still have to mentally prepare myself to walk out of the house with them, and I know that is all me and the anxiety that fybromyalgia brings, but it does not make it any less real.

In addition I saw an occupational health therapist, who helped me analyse my work, life, load balance, and I realised that what I thought was rest was actually just low energy activities, simply on the basis that I did not feel more energised after, so I learnt to discover what I could do that was actual rest, so for me other than sleep. Meditation or a face mask, bath, and music, with no interuptions from others, sometimes just lying down in a dark room eyes closed and a podcast! I also found that I need to take a proper holiday, get away every now and then to re-boot, i.e. no work and no chores. To understand that sometimes sleep was not going to happen, and to accept it, that resting i.e. listening to a sleep story on the calm app, or a gentle audiobook or podcast with my eyes closed and focussing on breathing was better then frustration and anxiety! I also have started to look at my diet, i.e. quality of the food I eat, mindfulness, etc...

Talking therapies - see if you can self refer yourself, the waiting lists are rediculous, but worth getting yourself on it.

Finally don't isolate yourself, surround yourself with friends, they may not completely understand but could help give you a mental break.

Oh and one more thing - I found duloxetane caused even worse flare ups, maybe have a converstaion with your doctor about the side affects, make sure they aren't making it worse. In fact there is discussion about pain killers making it worse... I believe there has been some chat about that on this forum. I find painkillers don't really help, the ibubrofen gel 10% does for me as i can apply it to the specific areas that are causing issues, and I find Night nurse useful when I feel I need a good night sleep!

My advice, keep trying different things, as what works for one person doesn't work for others. Hope some this helps.

[Sarahvit]

Hi Nellie,

I was diagnosed with fibro, CFS and company (as I call it- all the other diseases that come and go with it) in 94. I fought it, go involved in research studies and tried just about every alternative medicine and guinea pigged myself with anything that made sense for healing that I came across. Well in the last year something above and beyond the fibro pain has arrived causing an intense PAIN which still has not been fully diagnosed yet despite seeing all the ologists and specialists who ordered this test, that test and scans, x-rays, and MRIs. All this being said even though I have not over come this but have through the research studies have helped the medical community to better understand fibromyalgia and chronic fatigue syndrome. So even though I no longer have the strength, endurance and cognitive abilities to continue on with contributing to the advancement in fibromyalgia and CFS/ME research. I try to encourage the newly diagnosed who have more energy, cognitive abilities to continue the advancement of research in finding better treatment and finding the cure of these diseases. It is hard for me to communicate what I am trying to say. Don’t give up continue the fight for a cure of fibromyalgia. God bless you. 🤗💜

[nellie_deany in reply to Sarahvit]

Oh I am sorry for how you are feeling at the moment. Sending gentle hugs 💜

[Sarahvit in reply to nellie_deany]

Thank you Nellie, don't give up the fight to regain your previous way of life before fibro. Sending gentle healing hugs and love your way. 🤗💜❤️‍🩹❤️🥰

[Littleboopeep]

Hey, I am hearing you. While it may seem really bad at the moment, the flare will eventually lessen - priorities self care as much as possible be kind to yourself. Maybe even see if upping Duloxetine or painkillers could help as 60mg it can go up to 120mg at max. I've been seeing a kinesiologist / hypnotherapist which has helped a bit

[nellie_deany in reply to Littleboopeep]

Hi I am hoping that this flare does end I get some respite. I have tried acupuncture in the past which I found worked but only for a short spell. I plan to speak with my GP 💜

[fibo]

Sorry you are feeling down I would say from my experience the sooner you except that is life now the better. If you need a stick get one, in the last 12 yrs I have gone from a stick to a rollator to a manual wheelchair and now this I have bought a electric wheelchair I didn't get on with a mobility scooter to Painful on my hands. Go for what you need.. I have taken Duloxetine for 12 years it stops me from getting to down but not the pain Tramadol and Paracetamol is good 👍

[nellie_deany in reply to fibo]

Hi Fibo, I am glad that you have found medication that works for you. I’m sure I will feel better once I have truly accepted my life as it is. I just need to get to that point. It is nice to hear that you have had a positive experience with mobility aids too 💜

[Yassytina FMA UK Volunteer]

Hello, I think a long flare will make you feel down as we are always looking forward too better days, I do get wanting your previous life back, I had many moments last week thinking the same thing, a continuous run of getting poorly on top of my conditions made me question everything, I do talk too my best friend even if it’s a txt just letting feelings out, I think an appointment with your GP would be good and see if there is anything you could trial too relieve pain , I agree with Welsh cat lady if we need an aid too get around make use of it , always good too chat here we really do understand , get threw one day at a time and take care of yourself lots of hugs xxx

[nellie_deany in reply to Yassytina]

Thank you Yassytina. I do not talk to my friends about it anymore because I always feel that they are fed up of listening to me. I find this forum a safe space to talk and express my feelings because I know everyone has been in the same situation at some point. Thank you for your kind words 💜

[Yassytina FMA UK Volunteer in reply to nellie_deany]

Indeed I too think the forum helps as we are in this big unwanted club together xx

[Albionrfx]

Hi nellie_deany,

I had tears in my eyes when I read your post. I echoed your sentiments. Acceptance is one of the hardest feelings to cultivate but don’t give up,

I wish you peace of mind, and strength to get through the days,

Warm regards,

MLT (Albionrfx)

[nellie_deany in reply to Albionrfx]

Thank you for your kind words, they are much needed these days 💜

[MiaMiaowMiaow]

I can totally relate to all of that. Gentle hugs back to you too