Posted , 3 users are following.
For sometime now i have been feeling unwell to the point where i am struggling to work and can not sleep due to pain, i can not walk far and it is affecting my socail life greatly. I have visited my GP several times and now i am attending referals but with no diagnosis insight , i feel very low and struggle to cope .I have Many of the SLE symptoms yet still i have no diagnosis , can any one help.
0 likes, 8 replies
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sue87388_UK louisa71123
Posted
I would ask you GP to refer you to a rheumatologist who will be able to confirm if you have the condition. It seems really hard to get a diagnosis these days. I wish you well and hope you get the answers to your condition soon. Good luck.
louisa71123 sue87388_UK
Posted
I have been to the rheumatologist and she has reluctantly refered me to a doctor who specilises in sle. The rheumatoligist said i did not have the rash so she thinks i don't have sle regardless of the fact i have all the other symptoms. Still frustrated. Thank you for your kind response
marion64534 louisa71123
Posted
louisa71123 marion64534
Posted
yes been to the rheumatologist and now have a referal for a specialist in sle but as i told sue the rheumatologists response was" you don't have the rash so you don't have sle" but thats rediculous as i have a majority of the other symptoms.
Some days just getting out of bed is too much and trying to sleep with
the pain is even worse, but i am grateful for your kind email.
cheryl21625 louisa71123
Posted
Tell your GP that you want to have bloodwork done for both Lupus and Epstein Barr Virus. (EPV) These are specific blood tests different from regular bloodwork and should definitely show what levels you have of key receptors to diagnose SLE. If you have any rashes on your body ask to be sent to a dermatologist and he also can send you for this type of bloodwork. I had my diagnosis within about a month. Then I was sent to the rheumatologist to determine how bad my SLE was. There are so many autoimmune diseases and they all have similar symptoms so it's really important they determine which one you have. A lot of people have EPV and don't know it. I knew I had it but didn't know it could lead to the lupus. Sunlight is also a bad thing to stay away from so use a hat/umbrella and lots of sunscreen until you get some final diagnosis. My determalogist told me this would be a very long process and it is. Try and get lots of rest in the meantime. Take care.
louisa71123 cheryl21625
Posted
Going to my Gp on Friday and i am going to mention the bloodwork for Lupus and EPV like you said . Trying to rest but always feel guilty and feel i let the family down as i have aiways been very active like many of us on here . I m sure you know what i mean, if i think something needs doing i would rather do it than ask and thats what is so upsetting about all of this. I feel i ve lost me , i have a very active mind and my body is letting me down and intern i m letting my kids down aswell as my partner.thank you for the surgestions and support.
cheryl21625 louisa71123
Posted
Hang in there. Once you get some sort of diagnosis, then you can move on to the treatment, but not knowing what's wrong just leads to a lot of anxiety, frustration and depression. It's important for your partner to read up on all the possibilities that you may have with autoimmune disease. This way he will be able to hopefully support you. We women are better at taking care of others instead of ourselves but it's now your turn. You HAVE to come first for now. The chronic fatigue is the worst for me because it's a constant reminder of what I can't do. The word "NO" was never in my vocabulary but I have had to learn to say it more now in order to best cope with this. My daily routine was sleep, eat, go to work and then rest on the weekend so that I could start all over again the next week. I was lucky I only had to look after myself but I could barely do that so I understand you feelings of letting your kids down. The more you rest during the week, allows for play time on weekends. Maybe you can get a cleaning lady once a month to just do basic cleaning. I used to be able to clean my apartment in 1 hour, not it takes me 3 days. I honestly know from experience, if you try to do too much, it will make it worse for you so you are better off just doing a little bit at a time. Good luck on Friday and let me know how it goes with the doctor. Take care.
marion64534 louisa71123
Posted