Things change daily...

[fluffiebunnie]

is this true for you?

I really didnt feel I have SJS... but maybe I think I now do have it.  I thought it would all go away and be counted as a viral problem, but everyday since I have started a symptom diary in March things happen...

I have constant inflammation showing in blood tests, constant raised liver funciton in blood tests... now I have had Bells Palsy (although been told BP affects the 7th cranial nerve and my optician states damage is to the 3rd and 5th nerves).

I am also getting pains in my right side of my neck - feels like something is torn.. and I get aches and pains randomly all over the place.. legs/arms/face/back....  I have had stabbing pains to kidney area and then ache in kidney area (my GP suggested pilates) LOL.  Sometimes I have to take paracetamol.. sometimes I put up with it.

I thought I had Lyme Disease after researching online (silly I know) so GP did a blood test that came back negative (heard that you get that a lot even if you have it).  Doctor is sending me for another thyroid blood test as I think the consultant did one, but no idea of the result.

I am happy that the nerve damage in my face (eye affected and mouth numb) has improved a lot, but wonder where this is all ending up... I am hoping the symptom diary might show the consultant what is happening as he says I am a bit of a mystery and was gonna close my file...

When I last saw him I said I was ok, but that doesnt tell him much so thought the diary would be more helpful for him to solve the "mystery".

Sorry I am rambling.. does any of this make sense?  I still have slightly problematic eye and mouth dryness.. it comes and goes.. get blurred vision a lot and white bits floating through my vision....

Not sure what the point of this post is... just felt I wanted to talk to someone and I know everyone here understands.

[loulou]

hi fluffybunnie

Whereabouts in uk are you from?

I was diagnosed with sjogrens and thyroid in 2004, i have since been diagnosed with Primary biliary cirrihosis. When i was first diagnosed i mostly had the fatigue and dry and mouth. But because the thyroid was way out of range i was suffering a whole load of other symptoms, i  never know even now which is to blame for what.

But i agree with you that things do change on a daily basis, i am getting more pains and aches in different parts of my body. I never know what is gonna hurt the next day. I am having an awful pain down one side of leg when i sleep, i have to move around in order for it to stop,
(dont know what that is)

Didn't the doctor do any urine tests for your kidney pain? and how long have you had raised liver levels ?

I hope you get your blood tests soon and they can figure out whats going on, its a good idea to keep check on symptoms, with the brain fog that goes with this can make you forget things that might link up the problem.

I wish you the best and you get results soon. Take care and keep in touch with how your doing.
BTW I am from uk, in Oxford.

loulou

[fluffiebunnie]

hi fluffybunnie

Whereabouts in uk are you from?

I was diagnosed with sjogrens and thyroid in 2004, i have since been diagnosed with Primary biliary cirrihosis. When i was first diagnosed i mostly had the fatigue and dry and mouth. But because the thyroid was way out of range i was suffering a whole load of other symptoms, i  never know even now which is to blame for what.

But i agree with you that things do change on a daily basis, i am getting more pains and aches in different parts of my body. I never know what is gonna hurt the next day. I am having an awful pain down one side of leg when i sleep, i have to move around in order for it to stop,
(dont know what that is)

Didn't the doctor do any urine tests for your kidney pain? and how long have you had raised liver levels ?

I hope you get your blood tests soon and they can figure out whats going on, its a good idea to keep check on symptoms, with the brain fog that goes with this can make you forget things that might link up the problem.

I wish you the best and you get results soon. Take care and keep in touch with how your doing.
BTW I am from uk, in Oxford.

loulou

Thanks for replying.. I am in Kent.

I had a urine test in probably around October last year.. but didnt have pains in the kidney area then and they said urine was fine.  I dont know how long I have had raised liver function, the consultant just flippantly mentioned he was testing again as it has been raised.... I will find out in August how that test went (took blood for that in March).

Yes the diary is an eye-opener to me, as I didnt think I was having many symptoms!  Its quite interesting to see that every day I do but wouldnt of mentioned it to the consultant before probably.

I was talking to my mum last night and she annoyed me as she said that I had probably started imagining symptoms.  In fact annoyed is not the correct word - angry that she should say that. 

[Chickpea]

Hi fluffiebunnie

Thanks for posting with your thoughts because I think you're in a place many of us reach at different times:  confused, overwhelmed, unsupported. 

It shouldn't be so but it does make a difference to everyone - friends, family, medical profession and especially ourselves - once we have a firm diagnosis.  And even more so once treatment starts.  Somehow it becomes official even though all the symptoms were there before.  I wonder if even that will be enough for your mum if she's anything like mine!

Your symptom diary sounds really thorough which is important for the rheumy and for you.  I find I forget symptoms day to day if I don't write them down.  I've started to record my moods too because I forget them too, and because my acupuncturist is as interested in them as the physical issues.  Maybe you could try that too, even just as a way of acknowledging how tough things are.

Take care - Chickpea

(I'm a near neighbour in Brighton.)

[fluffiebunnie]

Thank you Chickpea for responding... I think I just wanted some assurance that this is all not me making stuff up for attention...  I have decided I am not going to tell anyone about anything that bothers me on a day to day basis.  I will save it all up for my appointment in August.

I will make a note on my diary of my moods... I have had depression before and was on pills about four/five years ago, but stopped taking them.  I dont want to go down that road again.

[dbab]

Hi Fluffiebunnie,

That's why I like it here.  Nobody here is going to make you feel bad about talking about your symptoms because that's what we are all about. 

Chickpea,

I like the idea of writing down the moods.  I think I will start that as well.

[Dolly Dimples]

  Hi Fluffie Bunnie  and Lou Lou,   

                                 So sorry to hear you are both going down this scary road just now.

                                 
  Fluffie, you can come here anytime and talk things out of your system , knowing that we all care and understand everyone's anxiety and pain.

     I tell you this .. if transmitting our caring thoughts could cure, the Doctors would be out of a job!!

                                  My best wishes go with you both,  Dolly

                     

[loulou]

Hi fluffiebunnie

Hope your feeling some better. You only live a short way from me.

Dolly thanks for your thoughts, yes! this site with such caring people is the most supportive place to go when needing help and a listening ear - it would be an amazing cure - if only !

TAke care dolly

Loulou

[Tryfan]

I can really identify with all you've said.  I kept notes before diagnosis and now I have a diagnosis, I have been trying to keep some sort of diary but each day is so different.  I do think the diagnosis made me see symptoms in a new light though e.g. I have always had raised bilirubin levels but the docs didn't think anything of it...now, I think I'll mention it next time I see someone.  I suppose what I'm saying is that now, when I have a new symptom, I feel a degree of relief knowing that it might well be part of the SJS picture rather than some unknown beastie.  Better the devil you know and all that...

I've been doing Pilates for about a year and I find it is a good way of keeping the muscles strong.  However, I do find it difficult and painful at times.  The most frustrating thing is that you can have a good class one week and then the next you feel as though you are a beginner again because muscles won't respond in the same way.

T

[loulou]

hi Tryfan

Just reading your post and not meaning to alarm you but make sure you do mention your raised bilrubin levels, there is a range that the doctors would consider it to be in, but it definiately should be brought to his attention.

A little exercise if possible does seem to help, and other times for me not so good.

Wish you the best for your next appt. Let us know how you get on.

TAke care
loulou