diagnosed recently and struggling

[Huskymomma]

hi everyone

I came across this group and joined in hopes I can find some solace with others who may be going through the same thing, if not similar.

I broke my leg in 5 places a few years ago and I’ve never had a day pain free. The pain became widespread and has become worse as time has gone on. I used to ride and compete on horses regularly. I had to give all of that up. I’ve given everything up that I felt made me who I was. I am definitely grieving for that person and that life.

I have nobody now except my husband and parents. I have been recently diagnosed as having fibromyalgia, with arthritis now getting worse, and every day is agony, I take 300mg pregablin 3x daily, co-codamol (60/1000) 4x daily and 90mg duloxetine daily. Naproxen is PRN. I don’t ever feel like I have good or bad days. Every day is bad. Every day is lonely and I have nobody to talk to. My husband is amazing but I worry that I am offloading too much on to him. I am terrified of leaving the house now- this was never me. The person I am now is utterly unrecognisable.

I guess what I am wondering is, how does everyone else cope? How do you come to terms with the crippling loneliness and agonising pain? I sleep very little due to pain but everything exhausts me. I know that really doesn’t help! I feel completely worthless and have no purpose in life anymore other than to just stay in one place, writhing in pain for the rest of my life, being a burden to the 3 people I have left in life.

Apologies for such a depressing read. I hope this is understandable and a safe place that I am able to share things I just need to talk about. Thanks for reading 💕

[Kittenmamm]

Wow I am very similar. I had to have therapy for my depression and not wanting to go out. I hope you find the help you need.

[Deeb1764]

the first point is you have found a good forum so can rant on here when having bad moments!

Dealing with chronic pain my route was rheumatoid arthritis and then everything kept rolling in so heart lungs diabetes and RA’s bitchy sister fibromyalgia.

It’s important to find a new you but also grief for what was is also important too and don’t underestimate it! Took me a while to get my head round from active hardworking person and confident to a sofa slug. But I reached out to forums, I made sure I had quick ways of describing my day to hubby ie red amber green so he knows ok red day quiet day lots of pain and he keeps an eye but also space!

I did a self referral to The Wren Project when things got really bad and talking therapy helped me. My GP has referred me for pain clinics and CBT to see if this helps as lately things gone to mush.

If the drugs don’t seem to be working after 4months have a chat to your GP as something might need to be changed up.

Find what works for you , for me a sit in the garden is important even on cold days to get fresh air and see what flowers are coming thro. I also write a lot too.

Big hugs

[Yassytina FMA UK Volunteer]

Hello and welcome too the forum, it does help too talk here ,we totally understand as for many here live has changed threw being diagnosed with Fibro and other conditions, I am glad you have a supportive husband and parents, we do need loving support for sure. Living in constant pain is pretty awful and like you I have arthritis in my knee, I swam 3 times a week and was very active in my garden, a lot has changed for me but I am trying too stay postive for the sake of my husband , my 2 grown up children and little grandboys that visit. I am more at home than I ever used too be so home is my safe and comfortable place any bad days that’s where I want too be. I too take Duloxtene and it is also used for my anxiety which I think comes from living with conditions ,I have CFS as well. I try read, listen too my local radio show, in the evening some good dramas /film too take my mind off things. I think when this weather changes just being able too sit outside makes all the different ,Winter I think is harder and perhaps when we see the Sunshine it’s so much more up lifting(that’s just me personally )damp wet weather constantly makes Arthritis worse, I use Epsoms salt s every other day in my bath , soaking does help me some what and I do use hot water bottles for relief . I totally get grieving for the life we had before, I’ve no miracle cures too wish that away and I won’t lie saying I don’t get frustrated because sometimes we do. I’ve been on this forum for around 6 years and I always talk here and read posts because it really helps chatting with people , sending my best wishes xx

[Artful_Bodger]

Hi huskymomma, I’m so sorry to read your post and to feel your utter despair at the situation you are in. Life really can throw some whoppers and expect you to carry on.

I’m no expert, and have only recently been diagnosed, although I have suspected for a year or so… so what I suggest to you might seem naive… and I apologise for that, but it works for me, dealing with the loss of the person I was and thought I’d grow old as!

You’re clearly in a place where pain dominates your whole day, and often; so when I’m like that (which admittedly isn’t every day, like you), I really try to inject some positivity into my world… even small things make such a different to your (and your family’s) mindset; a jolt to let you know that you can still enjoy things, no matter how small.

Recall a time when you enjoyed something, preferably not something that you can no longer do… painting/baking a cake/having a long hot bath with candles… whatever it is, just do it and throw yourself into the experience so you come out the other side with a little bit of the old you… a good bit of the old you that can still enjoy things.

When I’ve done this, I have revelled in the reaction I have gotten from my hubby and family and that also helped give me a little boost!

The little boosts count… they help strengthen you; they help fortify you when you think all is doomed.

You’re still a worthy being, you still can “do” and I’d urge you to concentrate on that rather than what you’ve lost of yourself. I absolutely know that that request isn’t easy, but it will help you build yourself up and get to a place where you can function more contentedly, living with an illness which is taking so much from you.

I wish you well. Use this forum to get help and fortitude.

X

[Huskymomma]

thank you for the messages of support!! It’s really nice to know I’m not alone or being ‘mardy’ about it! It really does feel hopeless at times but I’m glad to have found this forum so I can talk to you lovely people who feel the same as me! Xx

[BellyEllieBob]

Hiya.You're in the best place here. There are loads of supportive people on here for whenever you need a rant.

I had therapy and after the NHS fibro group, some of us stayed in contact and have a monthly chat just to see how we are and what we are trying to help get over the bad days.

As a group we've found things like mindfulness, sudoko, crochet, any online games, colouring or little crafts help. I hate to say it but some social media helps too. I like a bit of tiktok to help me laugh through the bad days.

If you can, see if there are any local groups where you can get out for a coffee and a chat. But I completely understand the feeling of burdening the ones you love. Fibro makes you feel so guilty and you grieve for the person you once were.

Big hugs and I hope you can find some solace in knowing this community is here when you need it xx

[LuluBB]

I completely understand. I feel alone in this too. Everyone is like "you look fine" but I'm so not ok. This is hell and what's really depressing is there is no cure and no real answers to why my symptoms are so severe.

[Greengems]

I would recommend talking therapy and mindfulness they are what help me the most. Medication is so personal and varies so much person to person. I managed for years on co-codamol but this last year all pains have got worse and I’m doing the rounds with out much success and I don’t think the Doctors ever take in to account our size when prescribing I’m only 4ft 11” and even my co-codamol can make me sleep the day away. Let alone the big guns drugs. Interact with with this forum when you feel up to it it is a good source of information and support and always cheers me up.