Losing hope to live

Hi every one I was doing masters in USA Florida then suddenly one day I started to fell a little pain in knee joints the. After some days they became severe in every joint of the body I went to an physician he suggested me to go to an rhumy until that moment I don't even know that there is a department called rhumetology is there in medical field. Things went bad and I was not able to stand or walk so I was afraid and came to my country India where my parents are there. After an 2 weeks of diagnosis me and my rhumy came to know that I am a lupus patient by that time I have got blood clots in my leg fingers and now they have to be operated and 4 fingers are operated and some part of them are to be removed. Hope will get better soon and I know getting better is not seen in lupus. This makes me feel bad

23 Replies

  • Hi...where are u in india?

  • I am from anantapur Andhra Pradesh

  • Hi nikhil..how r u now?try to talk to ur near and dear ones who can understand you..its very difficult to cope up with the situation but u have too...am having lupus since last three years...my parents were in the same state..u can consult a psychologist if u need help..I seen ur other post regarding naturopathy and other medical streams...natural herbs can have adverse reaction on ur allopathic medicines..if u stop the allopathic medicine, u will not know when the disease will flare up...so be careful in each and everystep u take...I take of myself..eat healthy..be positive..reads books which gives u positive energy..it will help u a lot..be happy...it will reflect in ur health too...wen I came to know that I am having the disease..it has bad effect on my blood..destruction of blood..later with the help of medicines I had remission since last three years..now only I get cold and cough..I dont go in sunlight..I work as a fulltime nurse tutor in mumbai..basically from kerala..I go for work before sunlight gets thicker and comes back after five..I shifted my home near my college so that I will not get too much exhausted..cook for my family..by taking rest in between activities...go for outings only after sunset...I have a daughter of two months old..so u can adjust ur life accordingly..u should continue ur studies after u get alright..u will be able too..u should know ur body..what u can and u cannot..what medications u r presently on??is ur rheumatologist supportive and helpful?many of the rheumatologist may not be treating or familiar with sle...I had seen three rheumy and finaly got a good one..all the very best for u..support ur parents..accept the fact..know what all things u can do.life is very beautiful..love it..come out fast from ur present situation..always be positive..



  • Hi manju thanks a lot for ur words and bringing confidence to me. And my rumhy is good I think I am predsstiron and Hsqc and some vitamin tablets along with some blood thinning tablets. And one more thing I found new way for treating lopus our old Indian medication know as pronic healing. I meet with some followers of it and they are saying that it takes time but it can be cured. Let's give a chance.they say not to stop medication but just allow them to start treating it. If u are free check pronic healing on net.i am shocked to see that there is a cure for this lets hope it works atleast for our Indian genetic people

  • Ok...I was also on prednisolone..but stopped it recently as am in remission...hcqs is an antimalarial drug which helps to relieve ur joint pain on long term use..it helps a lot..atleast in every six months u have to do eye test wen u r on hcqs...will surely search about pronic healing..




  • Becareful to be away from people who have cold cough and other communicable diseases as u r at risk for getting it..ur rheumy may put u on immunosuppressive drugs to supress ur immunity as this is an autoimmune disease..

  • Yeah he is giving cycophosphalmaid Iv infusion in once In a month and this treatment is for 6 months he said. And really can we lead normal life like others. I really want to got Usa back and finish my masters and do job over there

  • Yes..u can really live like others..if u see me..u will not know that I have sle...I go out..do job..most of the people in my college dont know that i have such a disease..everything I want but only in a climate which I can..that's being away from sun and moreover a positive mind...love to life...after getting the disease I got married..I had a daughter..my doctor had told that I may get a flare up during pregnancy time..but I made my mind so strong and happy that nothing can defeat and t worked well..and I have got a very supportive doctor too..alwys have a strong positive mind..u will be able to do it..during my starting time I did not know how sle affects..it affected my lungs..but after the recovery I came to know what all things I can do and should be away from..afer that I had not got any flare...



  • So happy that u didn't get any flare and if u don't mind I will be following u when ever I bust this site for sure thanks SIS for ur advices I will follow them and good luck to and next time I will tell u snout my pronic healing experience

  • Ok nikhil..its pranic healing..not pro ic :) :) do not discontinue ur medications even if u start this ...

  • Yeah that's. Right. But my rumhy doesn't told about this eye test. I will take test as u told sister

  • Ok..fine..nikhil..best wishes

  • Hi Nikhilindia,

    Welcome to the LUPUS UK community, I hope you find the forum helpful.

    I'm sorry to see that you're so down at the moment. Do you currently live in India? I would recommend making an appointment with your doctor to let them know how you feel. They may be able to provide some additional support for you. If you have a close friend or family member that you can confide in then I would recommend it.

    Take care,



  • Thanks for the reply and yes I am in India present and my family is also felling so bad. They are controlling before me but both my parents are crying every moment

  • Hi Nikhil,

    I am a British born Indian also suffering with Lupus and muscle disease (amongst other illnesses aswell). It has affected my muscles, blood vessels and nerves. I too, am struggling to stand and with mobility. I have two children, and my husband (also from India) is very supportive. He is my rock! I am sorry to hear that you and your family are going through such a difficult time. Good luck with your operation. With the right medication, hopefully the lupus can be controlled and maybe go into remission one day.

    I have had lupus for 5 years now. You are probably still in shock with the diagnosis. It takes time to accept and to learn to cope with it. My lupus is now stable with medication and I am happy. My Consultant is fantastic and has kept me very positive and kept me fighting, so that I do not give in to it. I go swimming to retain my mobility and build muscle strength. That's what the Dr's have told me to do and I have been swimming for 5 years now, and it has made a real difference to me. I have managed to keep mobile for longer. The medicine is good and really works for me. I listen to my body, and when I am really exhausted, I rest. My friends and family in the UK are very supportive. If you feel afraid and alone (which is to be expected), it is always best to speak to someone close who will understand what you are going through.

    Please do not give up. I know it is very difficult to come to terms with, but in time, things start to feel better and more manageable. I had counselling which really helped. Life is such a precious gift, and we have to fight for a better tomorrow, because of our compromised health. As long as you have the love and support of your friends and family, and a good Rheumatologist, you can get through this. Illness never comes invited, it chooses us indiscriminately. The key, I think, is how we deal with it. I hope this helps. All the best.


  • Thanks renu I will try to live by gaining some strength to my heart. Really thanks for ur words

  • Sending you a big hug,it is normal feel way you and family do.your rheumatologist would be able give support via counselling. I had that couple years ago helped no end.my parents suffered emotionally to start with..they will be stronger soon.glad you joined here we can support. X

  • Thanks for ur reply at present I am felling too low trying to leave this world

  • you are not alone! we are all here to support each other! there are going to be good days and bad days and that is okay! on the bad days I urge you to listen to your body and rest when it tells you too. Meditate, whatever it takes to uplift your spirit:)

  • Hugs,you need tell your gp..

  • Hi sister happy news cured found and treated mice and result is positive and it is found on 15th Feb In Florida and I think will get this cure in market soon atleast in a year

  • Hi nikhil...how r u feeling now? How is ur health?

  • Nickel, How are you feeling now? Hope things are much better and normal. Keep us updated. Will power of humans is very strong, it can handle any adversity, be strong. All the best and be positive.

You may also like...