Fed up

Really struggling at the moment, it seems to make it worse because I feel like I have no one else to speak to. It's gotten to the point where I feel so stressed out and low about the condition that all I want to do anymore is stay in bed. Not like I'm even well enough to do anything I want to! I'm only 21 and yet I feel as though I'm an elderly lady! I miss being able to go out with my friends and go out dancing and actually being a normal student!! But instead I'm stuck in bed crying over pains in my back and this constant migraine I've had for over 3 weeks now. I'm fed up of people saying to me 'you just need a good nights sleep' or 'aw gosh, that sounds awful' or a 'stay positive and you'll feel better'. I can't even work on the weekend anymore because I just feel so exhausted and the pain never goes away, so now I'm top of everything I have money to worry about!! All I want is to feel normal again, to do everything I want to do, to see everyone I want to see and to achieve everything I want to but fibro and eds have taken over my life and I'm just so.fed.up.

31 Replies

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  • Hello Char and welcome.....You are not alone any more..you have found us and we are always here to listen, advise if we can and point you in the right direction to get help...Have you spoken to your GP about how you feel as they may be able to tweak your meds to give you some relief..friends and family mean well when they say things they think will give us hope but unfortunately it just makes us realise they do not understand our rotten condition. Are you a student at Uni? Maybe they can help in some way. I assume you are on meds...do they help relieve some of the pain? I wish I could wave a magic wand to ease things for you, but please do keep talking with us and I wish you a less pain day! x

  • Hi Trikki, thanks for the response. I'm on 600mg oh gabapentin for the pain and the dr wants to slowly citrate me up as I'm young and also I seem to be very sensitive to medication side effects. As for the migraines I am on 30mg propranolol but I've tried all sorts and nothing works, however I am finally going to a neurology appointment next week to have a scan and hopefully get some more advice towards what can help. Yes I'm a student at uni, & training to be a mental health nurse and the uni is very supportive and understanding of my situation.

    Thank you for the reply. It's nice to speak to people who understand xx

  • Hi Char_Green95 , Sorry your feeling so low as I think we all go thru at some point.I hope you can get thru this soon.Wisit the site on a regular basis for a chat, a vent or a laugh and I think it will help.Take care! ! Peck.🐤

  • Thank you for the kind comment, I wish you well also xx

  • Hi Char....so very sorry to hear you're at a really low point. I may be wrong but I do feel that it's a cruel condition for anyone to suffer - but that it must be that much harder when you're young. No denying it is very unfair and no doubt unbearable at times...like now. I hope the scan next week highlights something for the docs and they can at least get you to a stage where you can cope better. I'm keeping everything crossed for you....well, I'm crossing the bits that don't hurt so much. <3

  • Thank you so much for the kind message ❤xxxx

  • HI Char, just to say hello, my name is Barbara and I am 49, I just wanted to let you know you have done the right thing coming on to the forum, there are loads of lovely people here with great advice and tips for the condition. I was only dg last September so still finding my way. I completely understand how you must feel and my heart goes out to you. Please ensure you are getting and take all the help offered, and please don't ever feel alone. In the meantime I am sending hugs xox

  • Thank you so much. It's so lovely to have people on here listen❤Xxxxx

  • Hi Char and welcome here to our little group of people who care and understand your situation! I'm so sorry to hear how difficult a time you are having. I want to whisk you out of your home and take you on a magic ride through the skies to a place of great fun and celebrate your favorite rides and fun and beautiful skies full of great swaths of colors that blend and twist into blues and then greens and purples and now we see our favorite fireworks bursting all around us! Sarkly ones rising over the purples and greens and shining golden over the whole sky!

    I wish I could do this all of the time you are feeling down and then you'd never be down again! Well, we had our little moment, didn't we? Now you need a good book or a movie to distract you from your miseries, maybe? Sending you a big, gentle hug!!

    Sue

  • What a lovely message. Definately put a smile on my face so thank you xxxxx

  • Hi Char_Green95

    I have read your post with so much pain and sorrow for what you are having to endure my friend. It is not much fun having Fibro at any age but when you are only 21 it truly must be worse emotionally as you have a whole life to lead and enjoy which you are simply not able to do at this time.

    I was reading in your thread that you are sensitive to medication side effects. So I was wondering if you have discussed any alternative therapies with anyone like your doctor or specialist? Physiotherapy is a a good one that I would recommend to anyone as I undertake a very gentle 20 minutes a day routine which I have found has helped me tremendously.

    CBT has shown to be quite effective with some members, as have Hydrotherapy or using a TENS Machine. It may prove beneficial to talk to somebody about alternatives. I want to sincerely wish you all the best of luck and please take care of yourself my friend.

    All my hopes and dreams for you

    Ken

  • I am currently undergoing some CBT and I have spoken with multiple drs about medication and they citrate me up really slowly to refrain from getting any side effects. I have been referred to physio and I try to do some aerobics daily to help ease my muscles. Thank you for the kind words and the advice, it means a great deal xxx

  • Good luck my friend x

  • Hi Char, I was so sorry to read you have this horrible illness at just 21. On the positive side I would suggest you get some Epsom salts (available in b and m for £2.50) and use them every time you bath. The magnesium is very good for the pain and it has a calming effect too. Massage and acupuncture are also good for pain and acupuncture helps with exhaustion too. I get a massage through local college, at half the normal price. People with fibro are usually deficient in vit d too, you can get this checked by go, this also helps with pain. Other than that you need to try different medicines till you find what works best for you. All the best with your studies and I hope this has been of some help

  • Thank you very much for the advice I will definately try the things you suggested xxxx

  • Char_Green95

    I'm so sorry to hear of your pain and migraines as well as feeling so down. I know from experience how some of your issues can be so mentally draining, wanting to stay in bed, sick and tired of the pain etc.

    Just a quick intro to myself and then back to you. I'm now 60 and disabled due to chronic migraines (15 or more per month), chronic pain due to 3 damaged cervical discs, 2 have been removed with a metal plate inserted, all 6 of the lower most discs in my back from degenerative disc disease w/arthritis beginning to set in, issues from time to time with sciatica affecting both legs at times, peripheral neuropathy affecting both feet/legs as well as fibromyalgia. My personal record for daily headaches/migraines/cluster headaches is 9 1/2 months straight. And chronic reflux disease.

    Regarding your migraines, I'm happy to see you have a visit a neurologist soon. Headaches are difficult to pin point their exact causes sometimes, but I hope you can find some relief. There may be some diet changes you can make that would help reduce them or their severity. Over time, I've been able to tell when one is coming on and can take meds to help with them. As with you, I also take propranolol, though when younger I took 60mg twice a day and it did help. It may not seem like it, but if I went off of it, then I could tell. However now at my age, it has been reduced to 60 mg, 40 mg daytime and 20 mg nighttime because it can slow down the heartrate. However when I do feel the migraine itself or its symptoms I take Sumatriptan succ 100 mg (2 max 24 hrs). This is the generic for Imitrex. Also check with your doctor about botox for migraines. There are also additional meds now on the market.

    I too am on gabapentin (Neurontin) for the neuropathy/fibromyalgia. I'm currently at 2700 mg (900 mg 3 times daily) but at times, it doesn't seem to be all that effective. When I had a different health plan and doctor I was on Lyrica and found that provided me with more relief from the pain of the fibromyalgia. That may be something to discuss with your doctor to see what he/she may think for your situation.

    I would also consider speaking to your doctor to be evaluated for depression as dealing with your pain etc., it's not uncommon.

    Good luck and let us know how it goes.

  • Gosh I am so sorry to hear about your situation. I hope you are well and keep smiling! Thank you for the advice it has helped a lot xxxxx

  • Hi my daughter is 18 and has been diagnosed for 2 years. She is very similar to you and spends much of her time in bed. She is also very sensitive to meds and finds best relief from electric heat pads, massage and osteopath. I give her a massage every night which helps her to sleep and she now as osteopath once a week. Very expensive but it really helps.

    If you find heat helps then you might find Linnex heat stick (like a deodorant stick) helpful. It is available on line only but is really good. You only need to use a small amount (start with one swipe and build up otherwise you might end up feeling like you are on fire!) and it lasts for ages. It costs about £20 but will last a long time.

    Have you applied for PIP (assuming you are in the U.K.?)

    Are you under pain management? If meds don't work they might give you a lidocaine infusion. It helps in about 50% of people.

    Have you had advice on pacing and exercise? Some areas have pain management courses which can help.

    Mindfulness can also be helpful, there are loads of apps or pod casts. My daughter finds it helps her to sleep.

    They do say that if it starts when you're young it can burn itself out.

    Praying you will find something to help with the pain.

  • I'm sorry to hear about your daughter. I hope she knows she is not alone. I use deep heat so I will have a look for one of those sticks! I get a massage when I can. I ant apply for PIP because I'm currently a student. I am on a CBT and stress management course atm so hopefully find some peace during those. Thank you for your advice xxxxx

  • Hi Charles, me again ! PIP is not based on income and you can apply for this if working or studying. It is based on how your illness affects you (physically and mentally) and your ability to carry out your daily tasks, which is not very able if you are in bed for days on end. All the best

  • Oh thank you!! I will look into it!!xx

  • Being a student doesn't mean you can't apply. My daughter is doing a levels and is eligible to apply. Currently waiting for an assessment date. Hope you find the CBT etc helpful.

  • Hi everyone

    Breaks my heart to hear of someone so young so poorly.

    I really do not want to recommend anything but I have spent a lot of time reading about the benefits of LDN for fibro and took the plunge to start on it. It's early days but the results I have had in a short time have made me wish I had discovered this long ago. There's lots of research on line, see Ginevra Liptan - A doctor and fibro sufferer.

    All the best to you char-green.

  • Sorry what's LDN???

    Thank you for the kind words xxxxxx

  • How did you get LDN? I looked into it ages ago but it was going to cost a small fortune privately.

  • Hi Char

    If ever you need a chat just pm me. I'm quite a lot older than you. Gentle hugs xx

  • Thank you so much it means a lot xxx

  • Hi Char

    It's low dose naltrexone. Do some reading and see what you think. You would need a private prescription. I spoke to Dicksons chemist in Glasgow by phone, they were very helpful.

    I hope you feel a bit stronger this morning xx

  • Thank you very much I will look into it, best wishes xxxx

  • I've also found Ginevra Liptans fibro manual from Amazon very useful. Xx

  • Hi newtali. If you speak to Dicksons chemist in Glasgow they will put you in touch with a Doc. Medicine is approx £20 per month and £30 for docs consultation which has to be done every 3 months.

    As I say I don't want to sound as though I am recommending anything, I just want to share Incase it can help someone else live a better life.

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