In the process of being diagnosed with lupas

[Lainie36]

I have had some very weird things happening to me and I really don't know anyone with lupas, so if you have lupas tell me if you have these symptoms as well. I woke up one day with a severe headache that will not go away, an itchy scalp that gets worse when I wash my hair and the itching goes down the nape of my neck and into my ears. There are these swollen nodes across the back of my head. Also severe knee pain (right knee only), these weird pink spots mostly on my arms and legs that look like over sized mosquito bites. They can stand alone or develope in clusters. I also am very tired and my ability to concentrate has diminished. My ANA was positive with a high sed rate. Any feedback would be appreciated. I am a little scared.

[jennyall12]

HI!! Welcome to the group. I am so sorry to hear you're feeling not so great, but try and think positive. With a proper diagnosis and treatment Lupus can be very liveable - with most people (with non - involving organ issues) live a normal lifespan Trust me, when I was first diagnosed I was very scared like most people, with all the unknowns ... set yourself up with a good rheumy and follow their direction based on your particular Lupus (everyone has disease symptoms and not two people are the same). Be your own health advocate. It is all too scary in the beginning, but with proper support (physical, emotional and spiritual) you will make it through just fine. Consider me a virtual friend and you're welcome to message me anytime you need to ask questions .. I have had Lupus for eight years. I promise it wont be as scary as ya think. You have come to a great place here

Big hugs, you are NOT alone..

Jen

[Pepysmum in reply to jennyall12]

Hello Lanie

I would also be very interested in reading any replies to your questions. I have almost carbon copy symptoms at the moment.

I also believe I am in the middle of a flare because of total fatigue, very poor sleep and pain waking me during the night that is so bad in my knees and right shin that It infiltrates my dreams and I am dreaming someone is cutting my legs off!

I have the itchy head and lumps like mosquito bites too around nape of neck. I have just been to hairdressers and she assures me I don't have any sign of head lice ( I was scared all the itching was that) also I have had significant hair loss especially around the hairline in the front and temples. It is growing back now and appears very wispy. The red spots around the nape are joined up they extend into the hairline as single spots that itch and crust over. I am embarrassed as my scratching ( even though I try my hardest to do it discreetly) obviously draws attention and I find myself excusing myself and telling people I don't have head lice🙄😤

The pains in my knees is very troubling and most confusing seeing as I have one knee replacement so therefore the joint shouldn't hurt as it is artificial. The pain must be centred around nerve endings or muscle tissue.

To top it all I have just had an appointment with the rheumatologist who said that it was too early to diagnose lupus even though I have a pos. ANA test and several of the other key signs. She said as the so called quote malar rash was not witnessed by a GP it is debatable as to whether it was or not. For goodness sake!

I am attending another hospital next week for a second opinion.

So please any more info on Lanier questions I would most interested to read them.

Lin

[MoyaP in reply to Pepysmum]

Hi there. I have just read your post and have so much in common with you. Most of the info re Lupus that I have read so far, does not mention itchy scalp but mine has been sending me round the twist for ages and I did not make the link with Lupus. I too had my hairdresser check for lice (as a have a child in junior school). I've spent a fortune on special shampoo. My knee pain is sending me crazy, especially at night and I find little relief from Ibruprofen/cocodomol. I don't see the Rheumatologist until 27th and I'm terrified that I won't have any diagnosis and have to continue like this for even longer. How do you cope with joint pain?

[Lainie36]

Thank you Jen. I very much appreciate the encouragement. I am learning as much as I can about lupus and there is sooooo much information to go through. Were your symptoms similar? Very curious, and thank you again for responding to me.😀

Lainie

[jennyall12 in reply to Lainie36]

Hi Lainie,

Anytime and I am so happy to help anyone!

Symptoms I had - broke out two months post partum with my son .. hair loss, fatigue BAD knee and wrist pain, and bad rash from the sun - head to toe. I know there was something wrong .. I had a skin biopsy of the rash (positive for lupus)and pressed and pressed to see rheumatologist and was given my diagnosis just a few months later..

How are you feeling today?

Jen

[strawberryshortcake]

I haven't been diagnosed but I think I have it as well. I've got other things as well. My doctor just ignores me if I at I think I have Lupas. I get lots of itching. It comes and goes. Drives me mad some days. I've had unexplained spots like yours for about 3 weeks. Mine look like yours and itched a lot. It seems to have stopped itching but they are still there. I'm never usually bitten by anything! I try not too think too much about what I have as it starts to get you down if you analyse all the symptoms all the time, especially if like most people you have other things like Cmt, thyroid problems or raynauds. This is the best place to talk because no one else really wants to know and I feel as if I'm moaning all the time if I talk about it. Good luck.

[dianna123]

Feeling unwell all summer of 2016 and had e.x.t.r.e.m.e. Itchy scalp, nape of neck for @ 10 months total -starting in July ........saw primary care physician and 2 dermatologists......they were off-hand and clueless. Simply told to shampoo more often -ha! Diagnosed 'lupus' @ 1 year later. My hair is now very thin

[Pepysmum]

Ps Lanie,

Also I have had these terrible headaches on waking too. They are so bad I feel like if I bend forwards my eye balls will drop out - you know the sort of headache like a dreadful hangover with flu thrown in. . I do hope someone gives some alnswers or reassurance these symptoms are Lupus and experienced by others or maybe if not they can shed some light on the symptoms.

Lin

[mena52]

Hi Lainie36 I am new to the Lupus diagnosis to. I've had symptoms for 20 years, Lupus is in the family but a former GP wouldn't pay for the expensive blood tests (I know they are expensive I used to work in NHS healthcare as a Phlebotomist/Health Care Assistant). In late May 2017 I developed spots as you have in my hair down one side of my face and over my chest area. The GP initially thought I had shingles, however I didn't. I was given 2 weeks off work sick and told to rest & use calamine lotion which was particularly difficult using on my scalp with hair in the way. The spots took weeks to heal and were extremely itchy & painful the same down the back of my neck, the itching was terrible. I visited the GP again because they were still very visible and very itchy and sore and I was due to return to work. I am customer facing so would look unsightly plus a huge spot had appeared beneath my eye and I was worried as my eye had swollen. I had blood tests taken and was given a cortisone cream which helped the spots, however right now I still have a huge one on my jawline and a few more scattered over my face and chest area although they are not quite so painful. I tested positive for Lupus in my blood test although the test result was lost and when found put in the pigeon hole for a doctor who was on holiday and whom I've never seen. When found my own GP phoned to tell me I would be referred to Rheumatology dept at my local hospital and she would write immediately. Prior to May 2017, I have suffered with swelling, hot hands, fingers, wrists, feet, and extreme pain in these as well as extreme pain in my back, hip and both knees and I have felt extremely exhausted for as long as I can remember. I work full time and would often come in from work, grab a bowl of soup and go to bed. When I woke up I would feel like I've been run over, still aching and with a terrible headache that wouldn't shift. I've also got pins and needles most mornings in my fingers and toes. I returned to work on a phased return of 6 hours a day. By the 4th day I could no longer rush around to go to work and phoned in to say I would be late. My boss was not very sympathetic. I did arrive late and could hardly stand. My boss told me to take some iron tablets and work through the pain! I then went to the boss above her to complain about her rudeness to me when I phoned up to say I would be late. This Manager burst into tears when I told her I probably have Lupus and was very sympathetic, reducing my hours to 4 a day and telling me to only work 4 days a week every other day until further notice. However my finances have been affected terribly since I've had 4 days (1st day of sickness each time I've taken time off) unpaid, and to continue on this would mean I will run out of paid sickness benefit. I agreed to try this however my boss decided I would be able to work 4 days in a row and was unhappy I couldn't work longer so deliberately kept me at work for almost an hour over the 4 hours each day. I had holiday booked this week but have spent most of it in bed and in pain and exhausted. My appointment came through for my first Rheumatology Clinic, for 2nd November, as that is the first available date, which means I will have been waiting more than 5 months from the blood test being taken to my first appointment. My GP is writing to ask them if they can put me on a waiting list for cancellations, but doubts I will be seen any sooner. I telephoned my boss to tell her about the date of the appointment so that she could enter it in her diary and plan my day off around it. Her reaction was oh well it can't be that serious a condition then if you have to wait so long for an appointment. She doesn't seem to understand the state of the NHS waiting lists and her immediate response was "Well when you come back in on Wednesday, (this week), I want you working full time until 2nd November, then she put the phone down before I could answer further. I telephoned my GP and she was disgusted with the attitude of my boss and has now signed me off work for a further 2 weeks. I am going to request a meeting with Occupational Health and will be putting in a further complaint against my boss, who seems to think she is a doctor. I have been on this site for a while but have not been able to write my story yet because usually my fingers, hands and wrists are swollen and painful. Since I have now been awake & up 3 hours, the painkillers and voltarol are working for me temporarily. Good luck & I hope you feel better very soon. Keep us posted on how you get on. Lets hope you have a pain free day and the spots clear up soon, mine are almost there (I hope).

[Paul_Howard Partner LUPUS UK]

Hi Lainie36 ,

Welcome to the LUPUS UK community forum. I'm sorry to hear that you have been experiencing these symptoms and I hope that you are able to get an explanation and treatment plan soon. Have you been referred to a rheumatologist for further investigations?

The symptoms you are describing could be caused by lupus or a similar condition, but this may not be the only possible cause. You will need further specialist tests to be carried out to see what the cause is.

If you need more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

[jennyall12]

Does anyone have low white blood cells caused by lupus?