I don't know what to do!

Hi everyone, I'm new here so I thought I'd share a little bit with everyone and hopefully get some advice.

I'm 23 years old and I've been diagnosed with Fibro for basically a year although like many of you, I had it for a while before that. (I also have endometriosis which I've had since I was 16).

Since being diagnosed with Fibro I have tried Gabapentin, Pre-Gabalin(which I'm currently on), paracetamol, ibuprofen, tramadol and co-codamol(which I'm currently on). Over the past 2 weeks I've been in A&E twice due to pain induced panic attacks. I was given gas&air, ibuprofen and morphine and none took the pain away. I'm just at a loss at what I can do. I've tried the Lidocaine infusion and it made things worse if anything.

I was training to be a nurse but had to give that up because of the endo and the Fibro. Some times I'm fine. I've been to three different countries in the past 5 months and I've been in a wonderful relationship for the past 10 months an amazing man, who takes care of me and copes so well with my conditions. He pays for everything for me as I'm not in work. I cannot work atm due to the pain. My ESA benefit was stopped and I'm not entitled to anything. I don't know what to do.

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25 Replies

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  • hello Georgie .,so sorry you had to give up nursing due to Fibro .why was your ESA stopped if you dont mind me asking?

  • It was stopped without a reason which annoyed me

  • Hello Georgiew94

    Please feel welcomed to the forum :)

    Unfortunately often there is nothing that will take the pain away and it is "just" a case of managing your symptoms and pain.

    Has your GP referred you for anything like physio or CBT?

    Another thing your GP can refer you for would be to a Pain Clinic although from the sounds of it you have already tried most of the pain relief going.

    The only thing I can think of is something like BuTrans patches (or similar) although they can irritate some people's skin.

    Wishing you a peaceful day.

    Lu xx

  • Thank you, my GP is useless honestly. Doesn't refer me to anything unless I mention it first. Im under pain management but they don't do much. I haven't heard of the patches. I can try them xx

  • If your GP is not helping you, are you able to see another doctor in your practice?

    If not, I would definitely recommend that you change your surgery.

    Having a supportive GP when you have Fibromyalgia is essential.

    I've had Fibro & ME for 36 years. I have come across useless GP's and very good ones.

    You could try ringing round a few surgeries in your area and asking if any of their GP's have an interest in Fibro.

    Lu xx

  • I've just moved house so thankfully I'm moving to a different GP but my current gp is rubbish. All the GPs at that surgery are

  • good luck with your new GP,hope they are more supportive and you find a good one.i know what rubbish GP's are like,

  • Hey Hunnie,

    I'm so sorry you are going through this awful time, I am 24 so we are in a similar boat :)

    I know that the first thought is to go down the medication route, but have you tried anything else? I know a lot of us on here swear by Epsom Salts in a really hot bath, a TENs machine and also Magnesium spray! It could also be worth asking your doctor is you are deficient in anything as taking the extra vitamins etc can really help!

    What is really awful about this condition is there is never anything that stops the pain; it continues on regardless but just becomes a bit more numb. It is all focused around pacing and learning what some of your triggers are....

    Apart from your OH (other half) how is your support system?

    xxxx

  • I've tried Epsom salts which help while I'm in the bath, but it's getting out of the bath that is the problem same for the tens machine. I haven't tried magnesium spray yet tbh. I know I'm anaemic so that doesn't help at all.

    My family and friends are great. They know how to deal with my flares and are very supportive and understanding.

    I'm sorry that you're going through this too xx

  • Yeah I understand what you mean regarding the bath, we had to get a shower fitting as I was really struggling! I would suggest giving the spray a go and seeing if it helps at all? Also, talking on here and having people to relate to goes a long way!

    You are lucky to have such an amazing support system, that can be quite rare!

    Hope today is a better day hun xxxx

  • Thank you. I am going to try the spray. I've looked into it. X

  • Let me know how it goes xx

  • I will thank you xx

  • Ok, the positives first . . . You have a really great man. They're a rare breed 😁 so hang onto him! 😀

    I'm quite new to all this as well and may or may not have fibromyalgia and / or CFS. I can't really recommend or suggest medication. I've been on gabapentin myself and I'm currently on pregabalin which doesn't seem to be doing a lot.

    It's hard, but be frank next time you see your GP. Write down how you feel, your symptoms, what makes it worse etc. It's what I'm doing and I'm keeping it all on my Kindle so I don't lose it!

    With regards to the ESA . . were you getting the contribution based element? If you were, it's only payable for a year I think. They can't just stop it without a reason. Have you tried applying for PIP (Personal Independence Payment)? You haven't said, but if you live with your man and you're in a Universal Credit area, it would be worth considering making a claim. You might be entitled to help with housing costs.

    I hope things get better for you. x

  • He is amazing. We met online and he has been my rock the whole time we've been together.

    I'm sorry you are new to this. It's a horrible thing but there are so many people, especially on here, that are so supportive, like yourself.

    I'm not sure what ESA I was getting tbh, I don't qualify for PIP as I don't need a Carer. I live with my mum at the moment.

    I've made myself a pain diary so I can keep up with what I'm doing and what my triggers are.

    Thank you. I hope you are having a pain free day x

  • As far as I'm aware, the carer element of PIP is irrelevant. I don't think it matters whether you need one or not. I think it's dependant on how severely your health condition (s), disability or illness affects your day to day life.

    Glad to hear you're keeping the pain diary. I've slept for quite a bit of the day as I was still awake at gone 4am this morning. I can't seem to shake the cycle of insomnia 😟

  • Because I don't always feel like this and I don't need a Carer they won't allow it.

    I'm sorry. Have you tried lavender spray?

  • Not tried a lavender spray but I've a set of essential oils that includes lavender, as well as lemongrass, rosemary, frankincense and sweet orange and I mix and match them in the bath. The smell's nice if nothing else.

  • I haven't tried essential oils. Lately I haven't been having any trouble sleeping, over sleeping is my problem right now

  • Ah Georgie i am so so sorry that you have this diagnosis so young.

    My heart goes out to you sweetie.

    I have read some research today that omega 3 is proven to help with pain. Also CBD which is the legal part of cannabis is also really good.

    I take tramadol and Sertraline which helps but am going to try the above too.

    I feel that if i can get my pain under control i will be able to get a job and do more things.

    Hope this helps Georgie

    Lots of love and hugs

    Victoria xxxxx

  • Thank you so much. I have a CBD pen and it doesn't really help me. I haven't tried omega 3 yet. I can't take tramadol as it gives me horrible sleep paralysis.

    I hope you start feeling better soon xxx

  • What is a CBD pen?

  • It's basically a vape pen but with CBD oil

  • Ah ok a derivative of cannabis?

  • Yeah just the oil not the THC part

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