New to this

Hi all

I am still new to this. had a bad day at work today, broke down and cried. I am still awaiting my appointment with a Rheumatoid specialist hence no medication. I am tied of the pain and tiredness, anxiety, painful and itchy scalp plus am a single parent and don't know what to do. I have figured out that the sun is not good for me as i start to feel unwell, like today, i went for a 15min walk during lunch and immediately after started feeling unwell. that really upset me hence the breakdown.

I have been feeling this way for years and the doctors have only just paid attention to me (after persistently going back as I knew something was definitely wrong). I had suffered from depression (still do sometimes) and I do not know if this is part of the symptoms. I cant sleep and found this forum and some of the post has been helpful. its so good to hear from other suffering the same thing as it made me know that I am not crazy or imagining the symptoms.

sorry if am dumping on anyone, but just feel like yelling (cant afford to wake my daughter as she will be petrified Lol).

sometimes it gets overwhelming and I cry and other times i feel i can handle it. my appointment is still about 8 weeks away and i don't know what to do now,

15 Replies

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  • I understand how you must be feeling. When I was first time diagnosed with lupus I felt like that. I cannot go out in the sun at all. I know it sucks cos you can't go anywhere. Just avoid the sun for a while. Take plenty of rest. Sleep early and wake up early. Listen to what your body is telling you. Try to do light exercise twice a week at least such as yoga, swimming, Pilate, Tai chi, cycling or walking everyday. Try meditation classes it will ease all your anxiety and volunteering is always good. Talk to friends. Talk to your doctor during your appointment about how you are feeling. Meanwhile try all these things. I hope this helps. Take care. Xxx

  • thanks puneet123. I am glad to hear that someone else has the sun effect as well because I was beginning to wonder if its all my imagination. I will certainly get the sun screen and exercise advise.

  • HiSoultoo

    Sorry to read your having a tough time waiting for your Rheumatology appt. you could ring the clinic and ask to be put on the cancellation list. This has worked for me in the past. It's so tough waiting a long time I'll!.

    Depression can easily be one of the symptoms as you've had your life turned upside down and until you see the specialist you don't know why but suspect Lupus.

    Good luck for the appointment, keep us posted. X

  • I really feel for you. But hang in there - it can only get better. You could contact Lupus UK - even though you haven't officially been diagnosed they will be happy to help you & can put you in touch with someone local who you can talk to. What area do you live in? Never apologise for sounding off on here - we've all been there! Stay in touch & stay strong. We're all here for you!

  • Hi HazelW

    I live in Milton Keynes and will love to speak to someone that has more than 5mins (my GP) to spare. how do I contact them.

  • Why not start a new thread with the question - only people already following this thread will see this post but everyone will see a new one.

  • Hi Soultoo, you can contact us right here :)

    I will send you a private message with details of our telephone contacts and support groups.

  • Hi Soultoo, sorry to read you're feeling frustrated. I understand that. Lupus & 9 other health conditions have taken me 6 yrs to adapt to. I've had to leave work, gone fr being hyper active to low active, take multiple meds, change my lifestyle & diet (for the better).

    At first, for me the frustration was the random symptoms & not understanding my body anymore; my loved ones not believing than I was going thru such pain; feeling alone & misunderstood; lower tolerance levels; the pain/symptoms. Over time, I'm learning to embracemy health conditions, look out for patterns that may trigger them, adapt & learn new skills to replace the old ones. I pray that you get the support you need, your symptoms can be controlled, you find ways to manage daily life & that you don't give up. Some days you may not have the physical strength & need to rest but pls believe that this is temporary.

    Wishing you peace, love, health & wisdom x

  • Hi Soultoo,

    Welcome to the LUPUS UK community here on HealthUnlocked, i hope that you find the forum helpful.

    I am sorry to read that you are finding it difficult at the moment. Hopefully you are given the treatment and support you need when you attend your appointment.

    We have a free information pack available to download or request via our website, please feel free to do so as you might find it helpful. Just go to - lupusuk.org.uk/contact-us/

    If there is anything else i can do for you please let me know.

    Best wishes,

    Hayley

    LUPUS UK

  • πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£

    Hi;

    We are glade you are here. I hope we can help you. I am a guy from the southern part of the U.S. in the state of Alabama.

    You are welcome to view any of our profile pages to see what us with lupus go through.

    I will just say for now I have 2 mottos that I use for my lupus

    πŸ‘£ I will not let lupus control my lifeπŸ‘£

    Lupus may Change the way I have to do things but, I will not let it control me.

    πŸ‘£LIVE LIFE TO IT'S FULLESTπŸ‘£

    We who have lupus know that effects us differently but, then again it effects us all the same. This does not make sence but, then neither does lupus!

    I hope this at least makes you smile and feel a little better.

    Have a good and blessed day!

    πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£TirasπŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£

  • Hi Tiras

    your post certainly made me smile. please send me the link to your site and I will check it out.

    thanks

  • πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£Soultoo;

    I am glade you smiled!

    Just click on my name ( or anyone's name) and it will take you to our profile home page.

    We with lupus all have our issues. For me I have had to go barefoot for the last 2 years due to a lupus rash/blister on my right foot. It is something I have adapted to. Now going barefoot is and feels natural. The bottom of my feet are so tough, I can walk on any thing, rocks, cement, even hot asphalt, it does not phase me. I had to change my life because of lupus but, I did not and will not let it stop me from living and doing the things I enjoy. I do everything now that I enjoyed I just do it barefoot. I go to town shopping, I go fishing, I even go to church barefoot. We do what we have to do.

    I am a 56 year old guy and fortunately I live in the southeastern part of the U.S. In the state of Alabama. We have mild winters here so going barefoot year around in not a big issue. For an example last Christmas Day the temperature was in the mid to low 80 degrees Fahrenheit.

    I hope you have a good week!

    πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£TirasπŸ‘£πŸ‘£πŸ‘£

  • Hi there,

    Have you regulag physician send you to get ANA blood work if it comes back positve, usually a rheumatologist will try to get you in asap.

  • Sorry you are going through a bad time, I would go back to your GP and get them to either put you on meds and something strong for your itchy scalp or change your referral to urgent so you can be seen earlier.

  • Argh, you poor thing :-( it's so horrible when you feel no one is listening to you, and when someone finally does your appointment is weeks away. Try to hang on in there, get as much rest as you can (I know it's hard with children, I have three young boys) but make as much time for yourself as you can. Try to eat healthily and get some excercise, it doesn't cure the symptoms but it makes you feel a little better. If you've noticed a connection with the sun and your symptoms, always wear factor 50 sun cream and stay in the shade, or if your out and about maybe wear some light clothing and a sun hat. I've noticed myself that I get fatigued and have muscle weakness when I'm in the sun. It also makes my scalp itch like crazy, and everywhere else. If your desperate for an appointment then you could always ring and see if you could get an earlier appointment. In the mean time, keep strong and rest when you can, keep topped up on pain killers too if you need them. Hope you get some answers soon. Take care X

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