I’m having a hellish time. Have SLE & secondary fibromyalgia. Was on duloxetine 60mg twice daily for fibromyalgia pain. Now stopped. I found I had no emotion. In duloxetine at that dose. Was previously on fluoxetine for anxiety / mood.
I also reduced pregabalin as it causes me widespread oedema and increased pain.
So, now I am crying all the time (last 7-10 days). I think the last 4 years (since diagnosis) is just hitting me. I just keep getting on with life, working (as a nurse) when I can 🙄, raise my kids, help my family & friends and now I think I am absolutely done. Finished. Have nothing left to give or to cope. I’m so tired. Not sleeping & pain persistent.
I know Covid has taken its toll on the world. I kept thinking I was doing ok. But that has been the power of strong SSRI / fibromyalgia analgesia, masking everything.
It feels good to cry but this is too much. The thought of living a life in this pain, is too much. I am religious and pray for strength and He helps me but I’m struggling to think this is it. This is life.
I’m sorry this is so long. I don’t know who to talk to and I’m trying to explain it to myself and you.
How do you cope? I can’t live a life from a living room. Even the dog is upsetting me. Another one to look after! Family and friends can’t really cope with the change in me 🙄 as I’m always the “funny one, solves others problems, copes, entertains” etc.
I am sorry but I need your help.
Greentomatoes xxxx
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Greentomatoes
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You’re not alone, I’m thinking about you right now and the next reader will be too.You’ve had a tough time and sounds like you need a rest.
You have the comfort of your faith to draw on; I believe we are dealt a life that we are able to cope with and that we are given the inner resource to manage. Tap into that resource this weekend and I know you will find comfort and the will to fight on. Sending you comfort.
Thank you, really means a lot that you are thinking of me. Your kindness made me cry! I agree with what you have said. Just need a wee rest from the pain to recharge! Sending love xxxx
Greentomatoes, Did you taper off of duloxetine? I don't think you can just stop it and you were taking a big dose. I am thinking that your body is having a hard time being off of it. I wonder if your dose could have been lowered and that would have helped. I take 60mg. once a day and have for years. It helps some with pain. once I forgot to take it and reacted quickly and learned it did do something. I am so sorry you are having such a hard time. I just reread your post. Have you reached out to your doctor? I understand what you are saying about not feeling from the duloxetine, but maybe a lower dose or something else could help. You are dealing with so much and you are the one who has been there for others. I am sure that what you are feeling is also scary. Please do not be so hard on yourself. It is easy to see that you are a good person and that has not changed. You are not alone. I will keep you in my thoughts. Let us know how you are doing.
Greentomatoes, I understand about the numbness and then feelings can overwhelm and come flooding. I am glad you reached out and hope you will continue to do so. We are here for you so you are not alone.
Morning Stillsdisease & everyone!I can’t thank you and everyone who has replied, enough. It has made me feel part of something 💚💚
I couldn’t take the pain last night so had some wine. Woke with the usual migraine (cause by said wine) but for a wee while I was more normal. Migraine gone now 👍🏻. Pain excruciating this morning. But it’s another day and I know I can reach out to you. I don’t know how to manage this pain but I will contact GP on Tuesday. Sadly my Rheumatologist is very unsympathetic and I leave most appointments and cry (which is quite something as I was SSRI’d to the hilt- just shows you how badly she can make me feel). I will look into fibromyalgia care this is the source of most of the pain. Where would I go?
I just saw your post and wanted to say to you although you can't see clearly now, things will feel better and more under control. It seems that everybody wants a piece of you - family, work and even the dog - and you only have so much to give, especially when you are in physical and psychological pain. It sounds like you have a firm faith so draw on that and pray when all seems dark around you. Reach out to others and don't be too proud to ask for help - are there friends in your church who might be able to help out? Do keep hassling your doctor if your meds aren't meeting your needs right now - do you have a rheumatology helpline or nurse you can call for help and advice? I've found them very good and they have actually got my consultant to call me when times were really bad. I hope you feel more positive soon and can get your pain better controlled.
Dear Greentomatoes. You are not alone here - both in terms of people who care about others on this forum and people here who are experiencing similar.
I have also been going through a terrible, dark time recently (in part due to likely Fibro and associated functional neuropathic pain - still being investigated) and feel - like you - that I have nothing more to give, that my world has shrunk to little more than the four walls for the most part, and that I can't cope. The mornings are the worst - I wake up and then It just hits me and I can't stop crying. I assume this must be in large part due to chemical levels within my body but, in any case, it's truly awful.
I, too, have been wrestling with how I am going to deal with this. I have been through many episodes of low mood before - although largely to a lesser extent - and got through them. I don't find it easy to admit to low mood - a legacy I think of my childhood and having to always 'put on a brave face' - but I have finally let one of the prescribing nurses at my practice know and she has referred me to the primary mental health team. I previously didn't do well on SSRIs on the one occasion I managed to let my GP know what was going on with me - which lifted my mood initially (then I went into the numb emotional state you describe) but made my functional gut issues so intolerable I had to stop taking them - but perhaps it is worth me having another go.
Do work with your GP to find a dose of meds that helps matters, whilst also allowing you to not feel numb. Pumpkin2009 made the point that, if you didn't taper your meds, that is likely to be a contributory factor here - and that is also my understanding of how these meds work. So please do continue to work with appropriate medical help.
You mentioned that you have your faith and I wonder if you are part of a faith community - as that might also be a valuable source of support. I did go to church regularly in my teens, largely I think for the levels of support the community there generously extended to me when things were really bad at home.
Greentomatoes did you taper duloxetine? It is extremely dangerous to quit duloxetine especially at such high dosage unless you go super slow, tapering 5mg every couple of weeks or slower. Body gets used to this addictive drug easily and side effects of quitting are severe.
Greentomatoes, I can hear your struggles. I have a feeling that along with the horrendous physical pain, emotional pains have been stirred up and contributing as well. Do you feel comfortable with counseling? I so wish I had the right words to say, just know you will continue to be in my thoughts. I am not going to give any seemingly easy fixes because I know it is not that easy. Just take as good of care of yourself as you can.
Gentle 🤗🤗🤗Green🍅You're not alone..remember that..ok?
Grief is part of the process of accepting the autoimmune stuff n it has to be done unfortunately 😔
I too think that you've come off the duloxetine too quickly..going from no emotion to too much emotion is drastic n you need to treat yourself very gently..both physically and emotionally.
It's great that you've reached out here though n you have to believe that u will get through this..all is not lost.
Maybe take a step back from all of your responsibilities for a while..you said that you're the funny one..supporting others..even wonder woman has off days 😉It sounds to me like u have to take some time for u right now..n I think friends will understand that.
Reach out to your doctor's to help u right now n concentrate on family stuff..bare minimum for now..u will get through this..believe that 💜🌈😽😽xx
Hello Greentomatoes - here is my experince. Just FYI I don't have Lupus, I have MCTD. However before I was treated using Plaquenil, I had major depression - most of my life. Once on plaquenil and duloxetine, by depression didn't completely disappear but it lightened significantly. My Dr's told me that with MCTD, Lupus, RA and others one of the symptoms is ... depression. Now I have reasons to have depression that are not medical but it is amazing to me how this dramatically changed. In addition I have removed gluten and sugar from my diet to avoid possible inflammation and that also helped. It is amazing how much better I feel in that area. Still have all sorts of other issues but for now I will take it.
Hello Greentomatoes, Hope you are feeling a bit better. It seems to me you have been neglecting yourself so much putting others' needs first. You are putting everything of yourself to others' needs and not at all into yourself. What about you?? That sounds sad and if anything would be against your own health condition. It seems you have not invested anything in your own self. Even your profession as a nurse is all about helping others. So who helps you? Drugs from doctors can help you only so much. The rest is something only you, yourself can provide. Please do try and put lots of love, care and kindness to yourself. Your needs are the top priority now. Help yourself first so that you can help others when you are far better. The balance is so important.I hope this makes sense to you. If it helps, please know that there are fellow sufferers (like me) who have not been able to cry and shed a tear for years. Part of Sjogrens. I long to cry and yet cannot produce a tear, haven't for 8 years. I just feel choking on the throat...and motion the act of crying but no tears come out. So frustrating! Some have too much and some none. Such is life! 😂 Take care!
So sorry to read things are so tough at the moment. We have so much to cope with with these diseases that it is not at all surprising to feel awfully down at times. And we understand and are there with you through this.
The disease’s actual effects on the brain chemicals can cause depression, having a crappy disease that changes and reduces our lives, withdrawing your medication too quickly, being a self sacrificing person who has put others first…. All of these things are combining.
BUT things will get better, I know it can feel there is no way forwards but small steps and you’ve already taken a step telling us here. Can you tell family and your doctors? Some medication changes can help short term and there is always hope that we can go into a more remission easier disease phase and new drugs in the pipeline all the time.
And also somehow (and I’m afraid I’m totally unhelpful as I don’t know how so can’t suggest anything helpful but think it comes to most of us with time) we do less grieving for the lives we would have had. Quite suddenly for me I become content with the ‘new’ me and no longer feel grief. Doing things that give a sense of achievement and satisfaction helps but sometimes we’re so flipping fatigued that is so hard too so feeling proud of yourself for even small things each day. I can remember crying (and I’m really not a crier) because I felt such a rubbish mum that I could have lain on the floor at even the thought of the energy involved in something ‘normal’ people take for granted like emptying the dishwasher. But day by day I could do the odd thing and then went into better disease stages (and worse again but didn’t get the same deep sadness again just tried to hang tight and do the little things).
I really hope your family is supportive and do think speaking to GP to get the medication withdrawn more slowly might help - please remember there’s lots of us here who care and understand even though we haven’t met and will be holding your hand as you fight through this horrible phase to better times. And there will be better times xx
Hi Greentomatoes, thoughts and prayers—you are in good company here! We know what it is like to fall apart. There is no shame in that, and no judgement on this forum. We get it. I am glad you are holding on to your faith right now. I resonate with that, sometimes it’s the only thing that gets me through the bad days too!
It sounds like the impact of coming off the medications is giving you a rough time. Can I suggest discussing options with your doctor? I’m not a big fan of trying to medicate our emotions away, but given you are having such a strong reaction, is it worth considering an in-between mood medication, a stop-gap to help you through this period? Something to take the edge off? You could then taper off the stop-gap med more gradually. I’ve done that in the past, just for some short-term relief, until I am feeling more resilient. It’s just a thought, feel free to do what you like with my suggestion!
In the meantime, keep reaching out here as often as you need to. It is truly terrifying to contemplate the future, so please don’t feel you have to face those fears alone. I find it helpful to remember that the voice of anxiety usually speaks in worst-case scenarios—most of which never happen! And even if they do happen, we’ve got a lot of support and resources we can draw on. We’ve made it this far. May peace be with you this day. 🌻💛
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