nikki

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  • in reply to: Duloxetine for pain relief. #47858
    nikki
    Participant

    Hi, my GP has recently put me on this medication too. She started me on 30mg which at first did help but it didn’t last long so she increased it to 60mg and that not really working for me either. I asked to be put on this as I was previously on 2700mg of gabapentin daily and I put on 3 stone in weight so I hoped a change in medication would help me lose some, but no such luck. I’m not sure if you have started taking this yet but I felt quite sick for the first few days of starting.

    I really hope this helps you get some relief, like you this was my last hope there is nothing else I can have so I just have to deal with the pain. Stay strong.

    in reply to: Frustrated and dont know what to do !! #46213
    nikki
    Participant

    I’ve been in pain with my back for 2 and a half years and one thing I’ve learnt is that there is no point in going through pain if there is a way to ease it. My medication doesn’t take all the pain away, but it does help enough to get me through the day.

    Unfortunately people will pick up on the way you are and you will always be left to struggle. I’ve found that you have to be a bit forceful in order for get what you need.

    in reply to: Frustrated and dont know what to do !! #46211
    nikki
    Participant

    Hi Frankie,

    Sounds to me like you need to see a different doctor, each one that I have seen about my problem seems to have a different opinion as to what is wrong with me. I don’t understand why your doctor won’t prescribe things for you. I have been on tramadol and gabapentine for 2 years and oramorph for over a year and a half.

    I have been getting nowhere with the NHS and quite frankly have lost all faith in them. I went to the upright MRI centre in Leeds and I travelled to another of their clinics in London. In Leeds they scan your body whilst you are sitting which I think is better than those that are done lying down. I know you would have to travel,so did I but it is worth it if you can find out what is wrong with you.

    I did a self referral which you can get off their website and I think I paid £500-£550. You are entitled to a scan on the NHS after being in pain for 6 weeks though.

    Hope this helps, take care of yourself
    Nikki

    in reply to: Unbearable #45557
    nikki
    Participant

    Hi Rebecca,

    I am so sorry you are suffering the way you are. I slipped and fell 2 years ago and I have been suffering with pain every day and I often feel like it is too much.

    Don’t underestimate how strong you are to have kept yourself going and coping for all of these years and honestly I think it is very admirable.

    Unfortunately I cannot really offer much advice about what to do, as I can’t seem to control my own pain, but I can be someone who can understand a little about what you are going through and sometimes being able to talk about how you are feeling can help.

    I hope things start to get a little easier for you.

    Nikki

    in reply to: Nerve Pain #45511
    nikki
    Participant

    Hi Hope,

    I take Gabapentine for my nerve pain I get side effects from this, bad memory and when I first started taking it I slurred my words, but I don’t do that anymore. I was put on Lyrica because of the side effects from Gabapentine but I found that I got terrible migraines from it. I’m sure it says that is a possible side effect, but I do have the migraine gene apparently.

    Everyone is different, what works for some may not work for you. It may be worth trying it and seeing if you get some relief.

    Take care
    Nikki

    in reply to: Struggling with undiagnosed pain #45500
    nikki
    Participant

    Hi Cara,

    I’m so sorry you are struggling with pain and lack of support from your family. I can imagine it makes things much harder to cope with.

    You must keep talking about things and try to find a way to stay positive, even when you feel like there no reason to.

    Has your Doctor not offered you anything for your pain to help reduce it? Have you had any investigations to find out what could be causing your pain?

    Thank you so much for the offer to talk it is very kind of you. Keep strong.

    Nikki x

    in reply to: Struggling with undiagnosed pain #45499
    nikki
    Participant

    Hi Janette,

    Thank you so much for the offer to talk, I want you to know you can talk to me also😊

    Things have been hard recently when I take the stronger painkillers like Zomorph and at the moment Fentanyl I seem to become someone I don’t recognise. My partner finds it hard to understand and it seems that now my relationship is at breaking point so I’m dealing with a different kind of pain.

    Since we last spoke the spinal team discharged me, with the advice to my GP that I should go to a neurologist, I had an appointment with my GP the other day to reduce my fentanyl patch and she told me that the neurology department rejected my referral because apparently I have been investigated enough, and gave the advice that I should go to the pain team.

    So now the reduction of the fentanyl has left me in excruciating pain and I’m trying to not let it show because I don’t want anymore pressure to be put on my relationship. And I feel so angry that someone can just decide that I shouldn’t be helped before even seeing me.

    Sorry for ranting Janette, how are you doing? I hope that you are well😊.

    Nikki

    in reply to: Struggling with undiagnosed pain #45498
    nikki
    Participant

    Hi Steve,

    So. Sorry I’ve only just come back to the site, I seemed to just go in on myself and have not really been speaking to anyone, forced myself out of it and just seen your post.

    I have recently just paid for an upright MRI of my lumbar spine, and that didn’t show anything wrong but did show that I have mild scoliosis in my upper spine, so at least I got answers for all the pain I’ve been getting in my upper back for years. We then decided to go to London and get a stand up MRI of my pelvis, which says nothing is wrong.

    I’m so confused, if there is nothing wrong then why am I in so much pain? Could I ask you what a SPECT CT scan is? My partner has asked for a CT scan for a long time but they have refused because I’m a woman and the radiation is more than an X-ray so it could affect my chances for having more children. It’s crazy!!

    I hope you are doing well!!
    Nikki

    in reply to: Feeling like I’m not myself anymore #45346
    nikki
    Participant

    I feel like this all the time. I try to research ways to make it easier and I’m constantly looking for tips on how to feel differently. My partner works away Sunday night till Thursday so I’m pretty much on my own and I find when I wake in the morning I can just about get through until my son goes to school. He has to get a taxi because I can’t take him anymore. Once I have closed the front door I have to lie on the sofa until my meds have kicked in enough for me to be able to move about. I often end up falling back to sleep and before I know it, it’s 10am and I have to force myself to get ready. The thought of showering and getting dressed fills me with dread as I just don’t feel I have enough strength to move.

    I used to be very active and was always ready before my son went off to school I did aerobics, walking in the hills etc and now I find it difficult to walk up the stairs most of the time. I’m dreading next week because my son has a transition week in high school and I have to take him. I hate being this way I feel like I’m letting both my son and my partner down because I’m half the person I used to be. I’m sorry for the miserable post, im having a bad pain day today. 😞

    in reply to: Struggling with undiagnosed pain #45344
    nikki
    Participant

    Hi Lee,

    I’m the same as you I don’t like feeling like a zombie and I will be coming off the fentanyl patch soon my GP just wanted to give me some respite from the pain, and if I’m honest I was so grateful. I’m like you the nerve pain is what gets to me the most and I find I can be unbearable to be around when it gets bad. I don’t know how my other half and my son put up with me. I get a lot of pain on the outside of my right thigh when I get cold too it almost feels like I’ve been punched there sometimes. I should really do Pilates as I’ve have also just found out I have benign joint hyper mobility syndrome but I find it quite difficult, I have been told I can alter my yoga practice tho so I’m glad. I love swimming i just get so cold when I get out of the pool and that makes my leg bad so I tend to avoid it. I have been more drawn to the alternative therapies recently and I’m truly hoping I will find something that helps me cope better. Thank you for all your advice Lee it is so much appreciated.

    Nikki

    in reply to: Struggling with undiagnosed pain #45342
    nikki
    Participant

    Hi Janette I joined for exactly the same reason you did, for someone I could talk to who really understood what I was talking about.

    Medically I have had a facet joint injection, I’ve had 2 steroid injections in my hip and 2 l4 nerve root blocks. I had to pay privately for the facet joint injection and my partner is trying to get me to go privately again. It’s difficult for him to understand when I say I’m not sure I can be told there is nothing they can do to help me once more, each time I feel like my hope gets less and less.

    I have tried a chiropractor and I have seen an osteopath but each time I have been to see them they haven’t been able to do much because of the pain. Medication wise I take gabapentine, oramorph, paracetamol I was taking tramadol, but after my last nerve root block my pain trebled so my GP put me on a fentanyl patch. I have also taken zomorph but they made me feel really I’ll.

    I have been put on a 75mcg/hour fentanyl patch and the crippling back pain has eased to a point where I can cope with it, but the nerve pain down my right leg is causing major problems and I’m finding it hard to cope with that. I have forced myself to start very very basic yoga again but only when I feel I can manage it, guess it’s like my physiotherapy because I don’t think I’ll be going back to the ones I went to last week. I have also started meditation, I downloaded an app on my phone. I kept reading it was good for you and right now I will try anything if it helps.

    Sorry I know there is a huge list there. I do want you to know that if you need to talk I’m here.

    in reply to: Struggling with undiagnosed pain #45338
    nikki
    Participant

    Hi Janette I’m so sorry you are having so much pain. I had another horrible experience when I went to physiotherapy where I was pushed and pulled about and even had my pain questioned. I find it so unfair that the attitude of most people is that my pain isn’t real because there is nothing showing up on any of my scans. I really do understand how hard it is to keep smiling when you feel like crying and battling to make it through the day.

    Lee, thank you so much for writing you are quite inspirational. I have recently just started meditation my son and I do it every night as it helps to calm his mind, he has Aspergers. I’m still trying to get the hang of the mindfulness but I’m going to keep trying. I did yoga a lot before my accident and I have started trying to do that again now that I have been discharged from the spinal clinic. So far I can maybe manage once or twice a week I think I have my GP to thank for that at the moment she has put me on a fentanyl patch which has helped to take the pain away tremendously.

    Thank you both for writing back to me and sharing your experiences with me 😊

    in reply to: Struggling with undiagnosed pain #45333
    nikki
    Participant

    Sorry just realised that background would have helped a little. I had a fall 2 years ago, I slipped on a wet floor and landed on my right side. Doctors at A&E were convinced I had broken my hip but everything came back normal. I have had about 3 MRI of my pelvic area and six MRI of my lower back and no abnormality that would require surgery has come back. I paid for an upright MRI which found that I have mild scoliosis in my t-spine and a loss of normal lordosis. I queried why I wasn’t told about this and it was brushed to one side and the response was that I doesn’t require surgery anyway, I know this it just would have been nice to know as I explains so much about my upper back pains.

    The spinal team have now discharged me and have recommended that I go to the pain team and also to a neurologist. I have just had nerve conduction and EMG studies done just waiting on my results to come through. I’m hoping the pain team can help me more than the last pain management consultant I saw, when I told him the difference between how I used to be compared to how I am now he told me to forget about how I used to be, because this is who I am now so I should just get on with it.

    Thank you for replying to me, sorry about the long essay 🙂

Viewing 13 posts - 1 through 13 (of 13 total)