[Catherinelee]

I wonder if anyone could give me any advice or share their experiences? In April of this year I began to feel ill. It began with my feet hurting and then my legs becoming very stiff. Getting out of bed was a nightmare. I felt as though I was 81 not 41. I put up with it for a while but the fatigue hit me big time along with not being able to think straight, forgetting how to do simple tasks and not being able to get my words out. I had bad headaches behind my right eye, my hands puffed up and also the area above my eyelids puffed. I also developed a rash across my face which got worse in the sunlight. I felt the sun really affected me and on sunny days I would stiffen considerably and be in a lot of pain. I hate visiting the doctor but eventually I went to see my GP and after a positive ANA of 1:160 I was sent off to the rheumatologist. She mentioned she suspected mild lupus and I had a more thorough set of bloods done. About 2 weeks ago (end of October) I began to feel suddenly better. I woke up like a fog had been lifted and since then I've felt great with only a little stiffness of the hands and mild fatigue - I can cope with that! I went back to see the rheumy last week and mentioned I felt better. I came out her office feeling like a complete hypocondriac. My blood tests were all fine with the exception of a positive ANA again (she didn't know the titre as the lab. had missed it off). Her conclusion was in her opinion there was nothing wrong, I was one of the normal population who has an increased ANA and the face rash was nothing (maybe acne!). She suggested the fatigue was normal for someone with small children and I should take up swimming to lose weight. I was gutted and I never wan't to see a doctor again! I'm praying that it has gone away but I'm scared stiff that it will return. Can these symptoms all be coincidence? I'm going back to see her next June but I'm thinking of cancelling.:

 

[Salopsally]

Hi Catherine,
Oh dont cancel. You may need to see someone again before that anyway if things dont completely settle down.
Its very hard when you dont feel well to keep pushing for a diagnosis. I know because I have been there for about 12 years or more and only recently got properly diagnosed.
Ive felt like you lots of times in the past when you know something is wrong but they just look at you as though you are making it up.
I now have a diagnosis of Lupus and Fibromyalgia and your symptoms sound very similar. I dont have any rash on my face and dont really have headaches or memory problems.
Try and keep pushing for some answers if you feel you need them. Honestly if you dont take charge nobody will and you will just suffer in silence.
Im a great one to talk because I have to come here now and again for advice and support to keep pushing for better treatment too. Sometimes I feel like giving up and just lying in bed for the rest of my life.
Its been a long old road for a lot of people but you know things arnt all in your head so keep on keeping on until someone takes you seriously.
Good luck
Luv Sal x

 

[Maia]

It definitely really affected you quite adversely, and your GP believes that there was something actually wrong that caused it. So whatever it was, it was real and lasted quite a while.

There are other possible causes for a raised ANA and symptoms such as yours that can include parvovirus/5ths disease. It can lead to a months long illness which then clears on it's own and doesn't return. With any luck at all... that's what was wrong with you. It can even cause a malar type rash to appear on the face too.

However, if you have a return of symptoms, then I would urge you to keep that appointment or make arrangements to see a different rheumatologist since this one made you feel so terrible about the appointment. A positive ANA, combined with ongoing symptoms, definitely deserves a second look. Good luck to you and may the good times continue for you!

PS Try to get copies of the bloodwork that was run including titres. This will help you should you need to revisit another rheumatologist. If you have any other rashes, take pictures of them. Unfortunately, sometimes it really is up to us to get/keep/stockpile all this evidence to insure we get the right diagnosis/treatment.

 

[shelleylouise]

Hi Catherine
you sound very similar to how I have been,I get really bad pains in my hands & feet,swollen fingers,fatigue & confusion & stuff & Ive also develpoed a rash like yours too,even though my bloods came back negative my rheumy thinks I still have lupus - just that is mild or in the early stages still so I would say dont cancel your later appointment,I hope you stay well but just in case, dont let it drop & if you are poorly again ask to see a different rheumy because it sounds to me like youve been fobbed off.

 

[LolaLola]

Dear Catherine,
Sounds like you got the usual tired old advice, lose weight, you will be tired with young children etc! Sadly not every Rheumy is a Lupus expert. My Daughter and I are treated at St. Thomas' but before that our local treatment was positively dangerous! My Daughter is 17 and is more up to date with her condition than the local Rheumy-which didn't give her much confidence.
I am really glad you feel a lot better,but as you deserve to be fully well I suggest you give some thought to going elsewhere if necessary. Saving a little money in case you need a Private appointment in future might be a good idea.
x Lola

 

[Catherinelee]

Thanks guys for your replies. I still feel achy, my feet hurt, my hands and eyes are puffed up and my face is shining a lovely, healthy looking (!) red, but mentally I feel stronger and able to enjoy life. I am beginning to accept that my symptoms were not 'normal' and that dreading waking up in the morning is not acceptable fatigue associated with having a young family. Maia thanks for your advise about Fifth's Disease, I had no idea that a 'harmless' childhood disease could cause these nasty symptoms. I am hoping that I will continue to feel well but your advise about seeing another Rheumy is good and yes Lola I might have to start saving!
Cathie X

 

[Clare.T]

Hello Cathie
Don't cancel the next appointment and don't give up. Lupus is well known for coming and going - " relapsing remitting" One possibility is to see a dermy. Another is to go privately to the London Lupus Centre or referral to St Thomas' on the NHS.
When we get rebuffed we tend to take our chagrin out on ourselves by saying no more doctors and so on cutting off our nose to spite our face sort of thing. Getting diagnosed is too often a real struggle. Something is badly wrong even if it isn't lupus.

Bye for now

Clare

 

[Catherinelee]

Here we go again!

My rheumy says I need to lose weight, I feel more full of energy - so the dog gets a well deserved walk! 2 hours later I began to stiffen. Next day I woke up in terrible pain and struggled to get out of bed. Still struggling with pain and fatigue. Couldn't stop crying at the news last night (what are we coming to?), snapping at everyone (including the dog!). Awake all last night in pain - ibuprofen didn't help. Must I have the life style of a sloth just to remain pain free? Thinking about seeing the GP again but worried it may be too hasty. But surely I shouldn't feel like this after a sedate dog walk! Anyway he is leaving it in the rheumy's hands and she thinks I'm an overweight, slightly stressed mother with acne! At least I still have my sense of humour- just!
Thanks for reading
Cathie

 

[Catherinelee]

Oh no not again.

So it's not in my head, it can't be I would be feeling this way right? Since the last episode I've avoided doctors like the plague - they just make me feel worse! But I did go and see my GP last autumn and he ran a set of blood tests for thyroid etc. I asked him if he would just check my ana whilst the needle was in. I phoned for the results and the receptionist said that the doctor would call if anything was amiss - no call, so it must be fine so shut up and put up.

Anyway this spring things started to get worse again: hands swelled up and stiff, stiff legs, a beautiful bright red rash over my cheeks and nose (people keep saying I look healthy!!), feeling so tired and my legs don't seem to like walking.

Went back to the GP as I felt aggitated and was snapping at everyone again. Also I am a supply teacher and I am finding it very hard to do a whole day's work as I am so fatigued and have brain fog (you can't get away with mixing up your words in front of a class of 11 year olds!). My blood pressure was 160/100 and he asked why I hadn't been back for my blood tests; ana 1:640 and ro positive.

I have now also started getting white fingers in the cold wind. Also I have just come back from a beach holiday with the kids and I have never got such bad sunburn on my chest. The sun made my hands swell up like balloons and I was so stiff.

He now has agreed that something is afoot and I'm off to an immunologist.

Anyway any ideas? Does it look like Lupus or could they be another logical explanation? I'm hopeless in front of doctors and I need to get my head straight before I go and see the immunologist or I will come back more frustrated.
I'd love to hear of similar stories or advice.

 

[MountainbikeLynne]

Hi Catherine

I've just read back on your posts and it sounds like you've had a poor experience with doctors - you have my sympathy!

Your symptoms certainly do sound like they could be lupus related, although there may be a different (or more than one) auto-immune thing going on. The positive Ro antibody is associated with sun sensitivity (see http://www.uklupus.co.uk/antiro.html) and Sjogren's syndrome (as well as lupus and RA). I have a positive Ro and I have both lupus and Sjogren's.

I would suggest that you start to wear factor 50 sun cream - your GP may prescribe this for you now (or may wait until a specialist recommends). Take further precautions in the sun, such as wearing long sleeves and a wide brimmed hat.

For your inmmunology appointment, it would be worth taking photos of any rashes you have, just in case they aren't present on the day of your appointment, and any other swellings that appear. It's also worthwhile keeping a journal, and then for the actual appointment, having a summary of your symptoms, medical history and any questions you have. With positive blood tests and your symptoms, then please don't feel that you are a hypocondriac - I think a lot of us have had these feelings, but you know your body and it sounds to me that you know something is wrong.

Do you know how long you may have to wait for an appointment?

 

[ElephantEyes]

Hi Catherine -

It sounds like you have been struggling with this for far too long now, so I hope your immunologist provides some answers for you. Lynne has given good advice and I second her suggestion of keeping a daily symptom journal and tracking your symptoms. You can grade your symptoms on a scale of 1-10 and you may be able to identify patterns yourself, e.g. feeling worse after being out in the sun etc. Bring a summary of this to your appointment.

Also, at your appointment, regardless of how you feel on the day, explain how whatever this is is impacting on your daily quality of life. I know I often feel fine at appointments and so I completely neglect to tell my doctors how horrible I was feeling a few days before. If you are experiencing fatigue and brain fog, give concrete examples of how that is impacting on your life.

Take care,

 

[diamonds]

Hi Catherine,

My process of diagnosis was a long one. Around 6.5 years. I had a positive ana and lots of constitutional symptoms but it took a bit longer to start to develop and recognise the symptoms that met the criteria. Often i wasn't associating some of the symptoms as being all the one thing, if that makes sense. It's only when i started to read about Lupus did i realise that the other symptoms were connected to my joint pain and fatigue etc like hives and and other photosensitive rashes and chest pain etc. I hadn't thought to mention them to the doctor and the rheumy wasn't doing his job properly and didn't do a proper health history. So things were missed.

Only when i was desperate and so unwell did i finally research Lupus (my GP was suspicious and mentioned it to me). As soon as i read it, i had a suspicion that this was in fact was i was suffering from. I did my homework and made sure i located a well recommended rheumy. I got my doctor to repeat all my bloods again, this time i had elevated inflammatory markers and a positive ana. I was determined and persistent. I wrote down all my history in order and all my symptoms i have ever suffered from. I guess having it all on paper and an experienced rheumy who was well regarded got me over the line in terms of diagnosis. I made it clear to my consultant and the registrar that this was not in my head and not a virus. The registrar wasn't convinced. But my pleas were enough for the consultant to take notice.

I'm now medicated and feeling so much better than what i was. I'm not perfect, but hey who is. At least i can function now. Stay persistent and i'm sure you will get a diagnosis soon.

 

[Catherinelee]

Hi Lynne

Thanks for the detailed reply. I will certainly start putting on a higher factor suncream - so frustrating as before I had the kids I used to have a skin that tanned easily and could sit out in it all day.

I don't know when my immunologist appointment is yet - I'm eagerly awaiting the letter. I'm sure I'm feeling the same frustration as many people; your life is suddenly on hold. I just want to shake myself and get on with it!

I'm feeling ok now - I can laugh about not being able to open bags at Sainsburys and get my credit cards out of my purse because my hands have gone funny. Last time it got in my head - I was really not myself and I couldn't control it, this is my biggest fear.

I've written down my complete medical history for my appointment as I'm bound to forget on the day.

I am a little confused as to why my GP is sending me to an immunologist this time and not a rheumatologist - any ideas?

 

[ElephantEyes]

I don't know actually - I was wondering that myself. I know one of the members here sees an immunologist, but I think he's really specialised rather than your regular immunologist. Hopefully she will see this post and be along to offer some advice.

 

[debatat]

Hi, I do know of a member who sees an immnunologist, but as Nellie says, this immunologist works at St Thomas, so is very experienced in lupus etc. If you see a good immuno, it can be worth its weight in gold, as they look at the immune system as a whole and the way it functions. However some are focused more on allergies which isn't so great.

I would look at the appt as a start, and try to get the best from it. Have a symptom list, any photos of reactions etc and relevant medical history. Lets hope you get somewhere.