Struggling. What's normal?

[Gail41]

Sorry for the long post. Been struggling now for roughly 6 months. Firstly had the Discoid rash which GP couldn't diagnose. Went to Dermatology at the end of Sept who told me straight away it was Lupus. She has done biopsies to confirm this. Didnt really have aches at this time just rediculous tiredness, but put this down to low B12. At the beginning of October the aches and pains really kicked in. Went to GP was given Amytriptiline and strong Co-codamols. Within a week started with really bad abdo pain (can't even wear jeans or trousers as stomach hurts so much) and diarrhea. Went back to GP Amytriptiline was stopped. However still have abdo pain and all over aches - abdo pain is helped by Co-codamols so taking them like they're going out of fashion. Still tired all the time, still have the discoid rash. Diahrria not constant but still about 3 times a day, worse if I don't take the Co-Codamols. Go back to Dermatology 13th of this month to find out what exactly I've got. Any body any ideas I've rang for the results of the biopsies but they won't tell me over the Phone n the consultant is on Ann leave so can't get an earlier appointment. Feel like rubbish all the time. Is this normal folks????? Also worried that apparently the consultant was calling me before she went on leave, but I didn't recognise the number so didnt answer (could kick myself). Thinking now its bad, why else would she call????

[jojo-lianne]

Hi Gail,

Firstly I'm very sorry that you're having such a horrible time of it at the moment! It's always far more difficult to deal with even the smallest of things when you're constantly tired and in pain.

I understand you weren't diagnosed all that long ago, have you been referred to a rheumatologist or are you seeing the dermatologist for the moment? Have they started a treatment plan for you to manage your fatigue and pain yet?

With regards to the co-codamol, it could in itself be prolonging your abdominal problems. It is known to cause stomach pain and digestive tract problems (although I must say it's usually responsible for constipation rather than diarrhoea!) I would recommend you go back to see your GP regarding your pain medication to see if there is anything else that you can try which might make a difference. It could be that something anti inflammatory like one of the NSAID's or a COX-2 inhibitor might be better for you at the moment as long as it's not contra-indicated by your other meds/conditions.

All I can suggest other than that is to stay really well hydrated and get something from the GP or the pharmacy to keep your electrolytes in balance whilst you're poorly. Coconut water is really good for that, you can get it from most supermarkets these days, but it's not to everyone's taste! You can also try a probiotic to start restoring the good bacteria in your gut, that might actually help with the diarrhoea as well.

It might even be worth calling the dermatology department and seeing if you can get a cancellation appointment with another consultant in the mean time so you can at least find out the results so you're a bit more prepared for your appointment on the 13th?

Hang in there, hopefully between your GP and dermatologist they will find something soon that starts to relieve all the horrible symptoms you're getting at the moment.

Xx

[Gail41 in reply to jojo-lianne]

Thanks Jo Jo for the reply. I don't really have any plan at the moment just feeling in limbo. Dermatology gave me steroid cream for face n body n gel for my scalp. My face is clear now thankfully but everywhere else is worse. Does it go the rash? My hair is getting increasingly thin aswell so my scalp is very noticeable and does not look nice it gets me down. My GP said they'd try to manage the pain, but given the abdo pain and Diahrreoa has now back stepped on that n said they think its better to wait for the Dermatology to see exactly what were dealing with and what medication they suggests they have mentioned I will probably be referred to Rhematology. It feels a little bit like they don't know so I just have to wait to be honest. Thank god it's only a couple if wks until I get some answers finally. Posted on here as there's so many ppl who have a lot of experience with this horrid condition and basically feeling like u guys know more than the Doctors, but then no amount if studying can compare to real life experience. Hope I get a plan like you mentioned it sounds like a good idea. At the end of all this do we get to feel normal again do u know or is it pretty much just one thing after another? Feel like I'm never away from my Drs n the amount of days I've had of sick with different symptoms is a joke I'm amazed I still have a job to be honest because I would of sacked me before now, so on top of everything worrying about that aswell. Please tell me things get better. Sorry to bend your ear xx

[jojo-lianne in reply to Gail41]

I have to say that once we find a GP or consultant that is sympathetic to our conditions, life does improve for most of us.

At my surgery there is one GP who takes an interest in auto immune things and I was very lucky to get a random appointment with her the day after she had attended a seminar on one of my conditions so she took a big interest in me then. I don't always manage to see her when I'm ill but when I do she gets things done

It is a bit of a bumpy road getting the consultants to finally understand what is wrong, then going through treatments until something works. It feels like it will never end and you'll never feel normal again then suddenly a week will pass when you look back and think 'Hold on, I haven't felt X for a few days now...!'

With work I would say the best thing is to be completely up front with them about all feedback from your Dr's. There is information on the Lupus UK site for both employers and employees, the leaflets are available here: lupusuk.org.uk/living-with-...

The whole website has some great information though and I'm pretty sure there is more available for the different 'flavours' of lupus if you call them and ask.

All of us have different things that we've found have worked well for us. I'm just coming down with one of the office colds at the moment so I'm dosing up on colloidal silver, sage tea and manuka honey & propolis lozenges as I can no longer have anything over the counter!

This is always a great place to ask for advice as it's pretty likely that at least one other person has experienced the same thing at some point.

Always remember you're not alone in this and that you are entitled to answers. If you're unhappy with the treatment you're getting from your clinicians then you're entitled to a second opinion and to ask for tests that you think might help etc.

Good luck and I hope that something I've suggested might make a difference for you!

Xx

[Lupylass]

Hi there.

So sorry to hear of what you're experiencing at the moment.

My first symptoms saw me going to a dermatologist first, before then being referred to a rheumatologist for diagnosis and treatment. The dermatologist suspected I had lupus though.

It's a difficult and frustrating time because until you have all the necessary tests and a diagnosis the doctors (your gp especially) will be reluctant to give you any medicines that might interfere or mask the test results.

I too was feeling awful and was desperate for answers and relief, but had to sit tight. If it's really bad you must speak to your gp and get help. Another dermatologist should fit you in.

With regards the diarrhoea, make sure you tell the doctors all about it and that it is still occurring even with the co-codamol. I had similar problems and was referred to a gastroenterologist. For me, it turned out I also had coeliac disease which was easily remedied with a gluten free diet. Whatever is causing your symptoms it needs to be investigated and sorted out for you.

Best of luck and keep us posted. X