Need some direction/advice

[Kaipi91]

Hi all . I am having some trouble understanding what's going on with my body and feel like I have no direction from my doctors! I have had a FUO since March. Muscle aches, shortness of breath, GI issues, joint pain, rash, extreme fatigue, confusion, and general feeling of being unwell. I get dizzy when I stand up too fast , I had night sweats for about a month straight . Negative ANA and negative skin biopsy. Dermatologist was convinced it is lupus but now says probably not since my biopsy came back as eczema.. I don't know what to do or where to go from here!

[saltrock]

Sorry you're suffering. I too had lots of symptoms but tests all came back satisfactory ( so I was told until I saw one that was elevated and deemed to be due to autoimmune condition) All I can say is hang in there. If you can, research localish consultants who have an interest in hard to diagnose conditions. Thats what I did and after seeing around 6 consultants who dismissed me I saw the one I found through research and he has helped me so much. You can be sero negative for many conditions but you need to see someone who sees past blood tests and listens to you.

Good luck

[Hidden]

Hi Kaipi try asking for arthritis test as thts how I was diagnosed. After seeing numerous of consultants 1 off them asked why I haven't had tht test. You have nothing to lose no harm in trying. Hope you get the answer your looking for and take it easy hope you feel better soon.🙂

[LalSD]

Hi Kaipi91, I am very sorry to hear this. Few questions:

- Have you every been ill before March, any history of illness?

- I would asked to be refereed to Rheumatology to speak with a Consultant.

I had a virus with similar symptoms on 16th February 2020 and i still suffer some of the symptoms. Hope this helps.

With best,

Lx

[Kaipi91 in reply to LalSD]

I've always seemed to have a crummy immune system. I had an onset of menstrual issues one I had my first child and was told I don't have PCOS but that I just have similar symptoms. I had high risk pregnancies with pre eclampsia symptoms (very high blood pressure) but they also weren't able to officially diagnose anything. I was sick late December with an upper respiratory infection that lasted several weeks. I get UTIs,strep,other upper respiratory infections a few times a year as well. I've never been to see a rheumatologist but may try that next. I've never felt sick for this long . I forgot to mention that I've had 3 covid tests all negative. Negative CT scan as well. The infectious disease specialist tested for all sorts of things and ended up sending me to dermatologist who was adamant I have lupus but as I said biopsy came back negative.

aside from my problems I am a healthy 28 year old woman! So this is frustrating. I thank you for your input!

[LalSD]

Kaipi91, I am not a doctor but the word 'strep' caught my attention. Strep throat can cause complications, such as kidney inflammation or rheumatic fever. Rheumatic fever can lead to painful and inflamed joints, a specific type of rash, or even heart valve issues. But if you get treatment for strep and not test your children, you might be in a repetitive cycle of passing it to each other.

The other thing is that, upper respiratory infection. Although you may have tested negative for covid19, assume you did not have it. But also act as if you did and try to eat well and sleep/rest as much as possible.

Clearly something is wrong and it is making you unwell. I would suggest to speak to the GP again but this time make sure you are in equal terms, you ask the questions and ask for a clear answer and express your concern of being ill all the time, could they consider this could be due to strep? Ask for a possible referral if they agree to a rheumy. I would also test the children for strep if they have not been tested yet (at some point) when all this is over.

Ahh one last thing, when I was growing up, we had vineyards and my father used to walk me around and tell me that black grapes are the best, dry raisins, a handful a day. Perhaps you can eat some to get your strength, only if you like them? He had cancers and all but still going strong and still tells me the same (86 years old). I make sure we eat a handful everyday.

Hope you get better. Lx

[Lo_Lo]

Have been where you are & is so frustrating to feel like crap everyday & sometimes not even able to get up & feel like there are no answers in sight. I have same symptoms as you + get Lupus Rash on face when out in sun. 1st diagnosis, Fibromyalgia. Rhuemy has changed to Psoriatic Arthritis & is testing for Rhuematoid Arthritis. Your rash could be Psoriasis or Gluten intolerance. Mine is from Psoriasis. If your pain is Arthritic in nature, a course of Prednisone will improve it. Hope any of this is helpful to you

[Lo_Lo in reply to Lo_Lo]

Forgot to say that if pain improves w/ Prednisone, that is strong clue pain is arthritis related. I also suggest you get a referral for Rhuematologist- that's how I got my answers