I'm new to this lupus disease

I'm new to this lupus disease

I just been diagnose about a yr just got hit hard 5 weeks ago I got the nose, flares, infections, blood transfusion are gonna be the hit rock show for me nah jk but honestly I'd like to know all your experiences and what I may be looking forward to? Cramps in body? Muscle weakness ? Got the hair loss lol, just whatever you can fill me in this is very depressing for me cause I'm not a person to be on energetic,. I don't have family so I'm doing this on a single note here lol but am trying to make the best of it OH ONE MORE THING what is GP?

8 Replies

  • Welcome to this wonderful site Lilrose. Afraid I can't write much just now as it's turned midnight & my eyes are starting to go. A GP is a General Practitioner - a doctor who works at a surgery, a "family doctor" if you will. They diagnose & treat a huge range of diseases in patients of any age. Think the US equivalent is primary care physician ??

    Just wanted to welcome you before I go to bed. Hope to get to know you better soon - this site is extremely helpful. Can't keep my eyes open so will say good night & take care. Keep well

  • Lol glad to meet you and hope you get rest

  • Hi Lilrose, glad you've posted your thoughts on this forum, it's been supportive to me in times of confusion, vulnerability & experiences relating to Lupus SLE. I had inactive Lupus for about 15yrs but as I tried to change my lifestyle fr unhealthy all at once (drinking, smoking, eating too much meat, overworking) my body actually went into shock. Think for me, gradually quitting such habits would've been better for me (Had I known). First signs of Lupus were just diagnosed as Raynauds Phenomenon when I was 14. By 27, I was having pain in my hips & testing diagnosed Lupus. At age 33, I started to feel more tired & continuous chest infections I was living in a flat with lots of damp which may have triggered the Lupus. I moved & changed lifestyle to healthier one but body was riddled with Rheumatoid Arthritis then got Pnuemonia & it went on & on....I've learned to adapt with the symptoms

    The support of a Rheumatologist, medication, other medical/health professionals & attending a support group has brought me comfort.

    For the arthritis I take Predisnole steroids daily which have controlled the joint inflammation, it's not an ideal long term solution but I was in so much pain I'm glad I'm functioning on them. I'm trying alternatives like Flax seed, Turmeric, Cayenne Pepper.

    To increase energy, I increase my Vit B thru tablet supplements, liquid & pomegranates.

    Apparently a raw food or vegan diet is better for those with autoimmune diseases, I still eat meat but add more vegan dishes to my meal. Raw food in summer is ok but I need hot food in the winter, esp as health conditions are high risk due to cold & poorer blood circulation.

    Also, it's a good idea to keep a diary of your symptoms - when, where, how, to identify any patterns or triggers.

    Sometimes by the time we get medical pro attention, the symptoms may be gone so they can't trace the source.

    I've learned to use Lupus to empower not enslave me, be kinder to myself, do what I can when I can, not pressure myself, know that I understand myself even if others don't, rid myself of negative energy (as very draining), know that even tho' I struggle with 10heakth conditions that I am worthy of respect & love to myself & by others. My health issues have helped me to renew my faith & belief in a higher power (God), this brings my comfort thru prayer in my darkest hrs.

    God bless you! Don't give up, we all have our struggles but it's these that make us stronger.

    Wishing you good health x

  • Lovely inspiring words. xxx

  • Thank you so much much yes god is my strength and yea I think I will do this! How about the throat and anemia ? Etc I'm going to need a blood transfusion soon and am very scared I'm very weak and have had many bad days these last 6 weeks I have also had the revision bypass which has caused me slot of problems on top of it all so if you know how I can get more answers on what to expect I'd like to know more

    Many blessings

  • Hi, I don't know about your throat condition but the blood transfusion is straight forward & not painful. I've had plenty of injections so I've got a high pain threshold. The blood transfusion procedure begins when an intravenous (IV) line is placed onto the patient's body. It is through the IV that the patient will begin to receive the new blood. Depending on the amount of blood, a simple blood transfusion can take between 1-4 hours (Taken fr Wikipedia but well explained). I felt 100% better after blood trans. I'm high risk anaemia so I take Ferrous Fumerate iron tabs 3 a dy & eat a lot of green leaf veg. There are also Iron Infusions (liquid iron injections) which are usually offered if pills don't work/iron doesn't digest then the blood trans offered.

    More iron in your diet will help. I know when Anemias draining, it's difficult to function.

    Hope you've got support if not, put some strategies in place, just in case of emergency.

    Pls keep us posted.

    Praying for your speedy recovery x

  • Hi Lilrose ,

    Welcome to the site. I am sorry to hear that you are experiencing a flare at the moment. Have you been to your doctor to see if your treatment could be adjusted to help?

    If you want more information about lupus, we have our full range of publications available to read and download online at lupusuk.org.uk/publications/

  • Is it me or does nausea come with this disease as well as shakes I hate this !!

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