New Symptoms

Hi this is to all my friends out there with Lupus. Please can I ask if any of you suffer with sharp chest pains shooting across your chest that prevent you from moving once they occur. Recently for some reason I have been getting a very sharp and stabbing pain travelling up my right leg when I have been laying in bed. And during the day I have been getting sharp stabbing pains shooting across my chest from right to left as well. And it is beginning to worry me and scare me quite a bit now as Heart attacks run in my family. I have also felt scared that the sharp pain going up my leg could also be caused by a blood clot . Please is there anybody out there who has suffered with the same symptoms and who can tell me what they mean. My Lupus does attack my heart muscles and lungs anyway. But the pains I suffer with when it's doing that are alot different to these sharp stabbing pains that I am getting now. With many thanks from Rebecca

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  • Hi ShadowSky,

    I have suffered from costochondritis since November. It's inflammation of the cartilage that holds the ribs to the breast bone/sternum. It's flipping painful at times and a bit scary.

    You can test yourself to see if that's what you have - lie on your back and press on your chest. If it hurts when you press down, that could indicate costochondritis.

    I know there are lots of other causes of chest pain in Lupus, such as pleurisy and pericarditis, so if you are at all worried, please go to the GP and get yourself checked. The sooner you know what's causing it, the quicker you can get appropriate treatment x

  • Hi ShadowSky,

    Have you been to see your GP or consultant about these symptoms yet? It is always important to get chest pains examined because they can have various possible causes and some may require investigations or additional treatment.

  • I haven't seen my GP yet , no Paul as I keep putting the appointment off in the hope that these pains will clear upon there own. But for some reason they don't seem to be doing that. My father had 5 heart attacks before he died and his brother had 4 as well as a quadruple heart bypass operation. Also their father ( my grandfather died of a heart attack too ). The pains are worrying me but at the same time I have an elderly dog who is also unwell and due to being deaf as well as practically blind as well she is has now become completely dependent upon me and gets very stressed if I go out and leave her these days. I keep thinking that if I can live long enough to get Sky through her old age with as much pain free as possible and give her the TLC that she needs by being here for her too. Then that's all that matters now. As she suffers with very bad Rheumatism and arthritis in her legs. She is now 13 years old and I know that our time is limited together . When I do lose Sky it feels as if that will be the end of my own life too anyway. As it would be cruel of me to have another dog with this illness. Not only would another dog end up out living me due to my body not being able to accept any treatment for this disease but all dogs need exercising no matter how large or small they are , and I cannot do that for a dog anymore either due to having to use Crutches constantly and a Mobility scooter. I honestly cannot imagine my life without a dog in it . And I darent even think about it either. All I do know is that when I do lose my Sky it will feel as if it is the end of my life too. I used to love walking for miles with my dogs out in the countryside and amongst all the wildlife and nature around where I live. It feels now to me that this disease has taken all the things I love doing in my life away from me. And still continues to keep doing that. I even used to love going to work and being with my friends . But everything just gets taken away by this Lupus. Losing Sky who has been my soul mate for 12 years now, is going to feel like losing the last thing I love in my life . Without a dog life just doesn't seem bearable to me anymore. All I want to do is get her through her last couple of years or whatever with she has left with me. And then after that nothing will feel of any importance to me anymore. I know my illness is deteriorating very rapidly. Because the worse it gets the harder I have to struggle with things. I try all I can to do all the things I can do, and whilst I am able to do what I I can now. But even then I still have to spend some days in bed to get over it all. I call them my Dozey Dormouse Days be wise no matter how much I sleep the exhaustion and fatigue just sets in and the fatigue takes over. I have lost no end of weight because there are just so many times when I even feel to tired and worn out just to sit and chew my food, let alone prepare it for myself. I know I should see my GP about the chest pains. But it scares me finding out that I might end up having heart attacks too. People say it's easier to deal with things if you know what's going on. But since having this Lupus there are just so many symptoms I get that most of the time I don't even want to know anymore. I have spent the past year backwards and forwards to the Dentist having Root canal fillings done and caps added to my teeth due to the Lupus attacking them too. It's as if there isn't a single thing that this disease doesn't attack. It's definitely a Disease that has no mercy and my biggest worry is that it might affect my brain too.I get very bad Brain Fog at times and even talking I end up standing there with my mind completely gone blank for no reason at all. Looking completely stupid and gormless. It's a very embarrassing thing to happen in front of people. I am scared to go about the chest pains because of what I might find out. It gets scary at times having to deal on my own with an illness that becomes more and more debilitating for me. I know there are always many others alot worse off. Having no family to talk to doesn't help. And having to deal with a 31 year

    old son whose life is screwed up with Mental Health and anxiety problems. This illness really is complete crap at times isn't it? Not just for me but for everybody who has to suffer with this. Anyway thankyou for allowing me to let out how I am feeling on this Lupus sight. There isn't anybody else I could say all this too. Take care everybody else out there. With many thanks and Best Wishes from Becca XX

  • Hi Becca,

    I'm sorry to hear that your dog is so unwell and how your lupus has had such an impact on the things that you used to enjoy.

    If you are not able to go to your doctors at the moment, do you think you could call them and at least have a telephone appointment? They may be able to give you some advice?

    I'm glad that you are able to share here. I hope that it is helpful for you to have this community to talk to.

  • Thankyou Paul. I never thought people could be so caring about this disease until I came on here. I have asked if my Dr will phone me today. I've never been able to talk with anyone about my illness until now and Healthunlocked really is a blessing in disguise for me. Thankyou again. X

  • Hi Paul just to say that my Dr did phone me yesterday and I am seeing her in a fortnight's time in the afternoon on Thursday 8th June. It's the most recent appointment I can get as I need to see her in the afternoon due to mornings not being all that great for me after spending time with my dog awake at night. Thankyou for your advice. The Dr said that we need to find out if the chest pains are related to my Lupus or whether something else is involved. I have to admit Paul that there are so many symptoms related to my Lupus that it honestly does get to the stage when ever any new symptoms do arrive that I just think it's only the Lupus again and try to dismiss any new symptoms. Even when I had an endoscopy recently due to bad acid reflux I said to the consultant it's probably just the Lupus again. And after the endoscopy he said to me that I was right it is the Lupus causing all the acid. I also have Sjorgens Syndrome now and get alot of symptoms with that too. How is it possible to distinguish what is and isn't caused by Lupus when it creates so many symptoms in a person's body Paul? It seems to be such an unforgiving disease as it feels as if there is nothing at all that it won't attack or affect in the body. And every test or dentist appointment or anything else at all, that is just a routine appointment for everybody else , ends up causing me to feel so unwell and suffer with such bad Lupus flare ups afterwards. Even after the endoscopy I was violently sick for days afterwards and suffered such a bad flare up for over a week or 2. It seems that no matter how hard you try to live a normal life with this disease and no matter how much you try to do things like other healthy people do it just continually drags you down all the time and knocks you for six. I know I cannot be given treatment for my Lupus but it still feels like a very unforgiving disease at times. I have heard and read that some people with this have to end up being given Chemotherapy. It's just so awful that people have to go through so much with this. My Lupus consultant who I don't bother seeing now told me once that Lupus is a very aggressive disease that has to be treated with very aggressive medications. I wonder sometimes what ever causes such an illness. The reason I no longer see my consultant now is because we have both agreed that without being able to accept treatment for this due to my body rejecting every medication I am given , that my visits to him were becoming totally futile . So I now just visit my GP instead who liasis with my consultant regarding my health now. I feel so much for other people who have to suffer with this illness. As it really does affect and destroy your life so much when a person's symptoms are so severe with it. And the worst thing of all is you have no control of what it does to you at all. Not one single bit of control over it. How can anybody say that they are going to beat a disease when you can't even control what it does to you? Take care and thankyou again for your concern and advice. I am very grateful that I was able to share these chest pains with you on here and be given the advice that I needed from you regarding doing the right thing because of them. As I said these days I just dismiss anything I get symptom wise now by thinking it's just the Lupus affecting something else again. With best wishes from Rebecca.

  • It can be incredibly difficult to distinguish the causes of individual symptoms if you have overlapping conditions and perhaps even treatments that cause similar side effects. Often it comes down to experience and listening to your own body and seeing whether your intuition can tell what is causing the symptoms. In some cases, people may experience sets of symptoms that come on together; this may help them know that it is a particular condition. Otherwise it is very difficult with no real answer.

    I hope that your appointment in a couple of weeks goes well. Please let us know how you get on.

  • Hello Shadowsky,

    When you say you stopped seeing you're lupus specialist due to allergic reactions to you're medications - what do you mean by 'allergic reactions' ? How did you're body react to the medications ?

  • Hello Shadowsky

    I'm literally on the other side of the planet and its always difficult to tell whats precisely going on behind the 'posts' but I'd really agree with Paul that it sounds like you perhaps should check whether another condition is happening - on top of the Lupus. Heart disease runs in my family too - but these days what was considered fatal in the past can be fixed with stents and surgery's. Both my father and Aunt have had their lives prolonged by about 30 years with these interventions. The stents are almost a day procedure.

    I'd jump up and down again and hope you can get some opinions from other specialists. I know its hard, but its possible a Doctor somewhere has an answer for some of you're problems.

    ...............

    What I'm now going to say might sound way off beam - but being an older SLE sufferer with some long standing disabilities and some new ones coming on - and having a not so great neurological reaction to Prednisolone - something I need to stay on to remain alive - I ended up going to a therapist to nut out whether I should essentially choose dying earlier ie: a slow burn euthanasia for myself by not taking the Prednisolone.

    During this therapy I discovered that I was suffering from the effects of protracted and repeated trauma that was actually reducing my will to live. While the disabilities that I've suffered due to the SLE do not help with my quality of life - it was actually dealing with 'life itself' that was the main thing destroying me. I was very burnt out by some repeated bad experiences with Doctors (a lot of them are low standard and lazy), and a not so great family I was also dealing with absolute social isolation - and I didn't like where I was living and the lack of opportunity to do something I enjoyed.

    She encouraged me to make radical changes to my life - to literally make life worth living - despite the disabilities. Like you - I used to like walking in nature. Now I'm working very hard to develop other interests that don't strain the body. eg. Train journeys - comedy Youtube clips - I even dragged myself to a play and an art exhibition. ie: exploring things I ordinarily wouldn't be interested in. Physically it wasn't easy to do these things - but it helped me out of my misery.

    I know when your'e at the serious end of this illness it all sounds fanciful. But for me sitting at home, dwelling on the seriousness of where I was at - was not helping me make the most of however ? much life I've got left.

    I'd really encourage you - when you see you're GP - (apart from asking to see as many specialists as you can) - to ask for a good therapist to help guide and support you through this period. Its not something you should do alone.

    xoxoxox

  • Thankyou so much Freckle 1000 for your very kind and sensible advice. I can honestly see where you are coming from and I completely understand what you are saying to me. The only trouble is though Freckle I have a 31 year old son living with me who is mentally ill as well and has anxiety disorders, as well as suffers very badly with OCD. And also has a condition that causes him to act like an 8 year old at times instead of a full grown adult man. I have had to deal with all these problems my son has suffered with on my own ever since he was a child because whenever I asked for help for him at the Drs Surgery nobody seemed to want to listen and continually treated me as though I was an over anxious mother. During my son's childhood years I worked at an Infant school as a midday supervisor and even then it became very clear to me that my son's behaviour was alot different to that of other children's. Still the medical profession refused to help or take notice of me though. He is now 31. And since leaving school at the age of 18 he has spent his whole life shut away in his bedroom completely isolated from people and society. Apart from when he visits a counsellor who he has been seeing from 11 years now. The counsellor is a private one and even after 11 years still has not succeeded in changing or altering my son's life in anyway than it was 11 years ago. He has no Friends, no Family apart from myself, no hobbies, no belongings due to his OCD preventing him from keeping anything. And to be honest he literally exists from one day to the next and has no life at all. My main worry now regarding my son is what will happen to him once my Lupus does eventually cause my demise. He continually tells me that when I die he is going to kill himself. Which of course I don't want him to do. But now if I try and discuss him with my Dr I now get told that due to his age I am no longer able to speak about him. Or ask for help. He still sees his counsellor who myself I class as his paid friend. Because she is nothing more to him. The rest of his illness and behaviour problems as well as mental health issues are still being dealt with by myself on my own even now. And sometimes I have to laugh when it says that people who suffer with Lupus should try to avoid stressful situations. As my whole life with Matthew is a completely stressful situation. When he starts acting in his child like mode he will wake me up continually to get some attention. And wind me up terribly when he gets bored. And stress me out very badly at times when he is not in control of his mental health and behaviour. I never know when he comes out of his room if I am going to be dealing with an 8 year old child or a 31 year old adult. Because his character continually switches between the two. I very rarely go out and leave my home now. Not only because my dog is elderly and has become completely dependent upon me due to being completely deaf and going blind. But also because my son wouldn't cope without somebody to talk with and continually give him reassurance all the time regarding his anxiety issues and OCD disorder. His OCD​ is continually about perfectionism. And he will spend hours and hours sitting with a torch once he has bought an item of clothing looking at all the stitches and making sure they are all in a straight line. Any imperfections he finds in anything he buys he is unable to cope with keeping them and ends up very stressed and anxious if they aren't perfect . Which of course nothing is perfect in this life. His OCD literally controls his life. As well as stops him from living a normal happy life. So really Freckle 1000. It's not just myself and my own illness I have to deal with , its my son's and my dear old dogs too. I am entitled to a carer due to the condition of my Lupus. But my son has to get paid for being my carer even though it's myself caring for him. Because without any carers allowance he would literally get no money at all to live on. Due to nobody recognising nor willing to treat the mental health issues that he has. Take care Freckle and thankyou again for your kind words and advice. With all my love and thanks from Becca XX

  • XOX

  • Just a quick ps.

    There's a psychologist called 'Ros' who works - on this site somewhere. (You'd need to ask administration how to contact her directly) Shes at Lupus support and understanding.

    I believe she's off sick at the moment ? but she may be able to offer you some practical advice - and different services that might be able to help you at a local level that you might not know about ? - Some support for YOU !!! Respite care to give you a break etc. A paid friend for you.

    I'm really sorry life has dealt you such a horrific hand.

    A little like our family. My brother's a quadriplegic with massive brain damage from a car accident from more than 20 years ago now. Just after the accident he was supported by me for four years. Now he's been looked after by my elderly parents (my fathers in the late stages of Parkinson's) - They do have some carers that come in and help though. Definitely not a family who's had a normal happy life.

    And now I'm at the stage of life where I'm not of much use to them and kind of have to put them out of my mind to stay sane. (at least I have this luxury for now at least)

    Wishing you some 'good luck for once'

    Much love to you -

    Kerryn

    xox

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