Auto immune/fibro confusion :( fed up!!!!

[linz84]

Hi I'm sorry if this is a long post but I need a good rant!!

I haven't been diagnosed with lupus but it has been mentioned by a few consultants.

Basically I've been suffering from severe fatigue, joint pain (mainly ankles knees and hands), random rashes, pains when breathing, confusion not remembering names or forgetting what I'm talking about, hair loss, ulcers up nose, cold sores, no appetite, weakness in my arms, I've had really painful rashes from the sun, my auntie has also got lupus.

I've been having these symptoms for about 18 months now on a permanent basis I have been on hydrohydroxychloroquine 400MG a day for around 14 months now which has taken the edge of my symptoms (before I was asleep for 6 pm every night couldn't keep my eyes open)

At my appointment in January I was given a IM steroid 120mg depo-medrone injection which helped dramatically but unfortunately started slowly going back down hill after about a month and eventually had a big flare at the begging of may.

I was not due to see the rheumatologist until July but I rung to rearrange due to the flair I was seen at the begging of June but the rheumatologist said that the symptoms I'm having now are different to what I normally have so now I have been diagnosed with fibromyalgia as well as my "temperamental immune system" he said he could put me on methotrexate and oral steroids but they won't help these symptoms because there different to the symptoms I usually have but I feel the same as I always have done??? The only new symptom I mentioned was my hands??

I'm really confused and apparently the steroid injection lasts over 6 months?? Is that right??

Also i mentioned I'm worse when I'm in work and my skin goes very red but he said that doesn't make sense but I am

I work at a school and it's starting to make me think it could be all the strip lighting??

[cuttysark]

Sorry you are having such a miserable time. I am similar with Seronegative Sjogrens , Biliary Cirrhosis and maybe Lupus but bloods always normal.

Like you I was initially told fibro but the steroid injection, Depot Medrol ,helped so much. I have had five now, every four to five months. The first was fantastic but the rest Not so great. I feel they last only a good five weeks, but then they seem to kick in again for another few weeks. Good effect usually all gone by twelve weeks or so.

You might find that happens too,so just hang in there and it might improved for a few more weeks. My Rheumy said no, they always last three months with everyone which is not true. I think we are all different how your body responds to the Depot and how quickly or slowly it takes to use it up.

I also am mega sensitive to all artificial lighting, we even had to get rid of the Christmas tree lights and buy some really dim ones !

I am sure that must be why you are having problems at work as I could never tolerate strip lightening, it is the worst. I come out in red weals on my cheeks and feel horribly fluey.

I hope you get more help soon, did the Rheumy not suggest hydroxychloroquine ? It is very good but sadly I could not tolerate it.

All the best, C x

[cuttysark in reply to cuttysark]

Sorry I just realised you had the Hydroxychloroquine already!

[linz84 in reply to cuttysark]

Thank you for the reply

I think I'm probably getting a little fobbed off now then because he said they last over 6 months it's really frustrating because I know it's my auto immune problem that's flaring because of the ulcers hair loss etc but he's adamant I'm starting with fibro on top of my other mystery illness.

also in my letter he sent to me it says the steroid had little effect to my symptoms but I said it worked brilliantly until about a month after argh!!!

I've got an appointment with a pain specialist physio in two weeks so fingers crossed will get some more answers.

That's exactly how I feel with strip lighting, it sounds stupid but when I walk into work after the weekend I feel like all the energy I've got gets sucked out of me and feel really achey the kids even ask why my skins red!

thank you so much for making me not feel absolutely crazy whenever I mention it to anyone medical they make it sound like I'm trying to get a sick note off them!!!!!

[flo_IarFachYrHaf in reply to linz84]

seeing a physiotherapist from the pain team at my local hospital was the best thing that happened to me! It was made for me by GP who realised things were really not right and that diagnosis from admittance to hospital was not right either [she though auto immune they fixated on post viral].

I am in the liminal spae of symtoms of SLE with sjogren's syndrome, having previous been diagnosed with psoriatic arthritis then fibromyalgia...but maybe all one amorphous thing. Rheumatologist signed me off when she said I hadn't had any more new or specific symptoms such as blood spot rash [I had] and she was cross that GP had given me steroid treatment for what she seemed to think was just a skin rash - I was like a swollen up lumpy red toad! Hydroxychloroquine and fexofenodine [the latter prescribed by GP] are my support! But have had another big flare up with bloodspot rash etc [all blood tests normal - even for inflammation which is what always happenes]; have decided with GP not to refer back to rheumatologist but to stay under the her care. Even though I do actually have new symptons - tendons and nerves seem affected.

It's pretty difficult when you are told you have new symptoms or have not had any when you know different. I feel grateful that there are 2 GPs I can see that I trust and who have seen me when I very unwell.

Photosensitivity indoors: halogens, strip lighting and brighter low energy bulbs esp "daylight" ones are not good. old fashioned incadescent bulbs are the best. still available for trade...but maybe not much longer.

Sometimes I wear a baseball cap indoors.

I wear workwear glasses that are UV protect thatreally wrap round but not shaded [because outdoors I have to cover my whole face and dark glasses really wouldn't help communication] - not good for the brightness but good at stopping the UV. I have UV filter on my reading glasses'

You need to get the lighting sorted and reduce exposure to light outdoors. Even covering top of head with something like UV protection Buff might help. And covering up arms and sternum area. I wandered round the house in a cap sleeved t-shirt on a mild winter day with lights on and then wondered why I was feeling unwell

cuttysark describes exactly my reactions to light - red skin and fluey like symptoms plus leg & lower back ache.

hope things improve - and that you feel supported by some if not all healthcare folk.

[cuttysark]

Just wondered re the strip lighting at work, could you wear slightly tinted glasses? Maybe try with sunglasses first and see if it improves then you get a pair made for indoor use.

I wear sunglasses in the house all day when it is very bright outside, I can't cope with the glare coming in. And maybe try some sun block on your cheeks as well.

I think they often do just fob us off but just try to be persistent and quite firm and definite about the symptoms. I usually write them down so I remember.

They are about to try me on Mycophenolate as I have a liver problem so can't take methotrexate.

As to the Depot injections, the registrar in the hospital said to me, this will give you three to four weeks relief( it was just the 80mg one) yet the consultant said three months!!! I think it is because they don't want to give you more than four a year they say that as they worry about our bones.

Hope you make progress. C x

[flo_IarFachYrHaf]

I had another thought/question [yes more after my long reply]: how light are the rooms you work in - how big are the windows which direction do they face? Windows unless covered in UV protection film are still going to affect you if you are uv/photosensitive.

[sophiecr]

I also am seronegative with all the lupus symptons you mention, plus raynauds, nerve involvement, polyneuoropathic disease, essential tremor, etc. All the doctors shrug and say I am a baffling case, give me steroid drops, plus the usual meds. One rheumy did tell me to not expose my skin to sun light, or equally bad....florescent lighting. When I do, on comes rash and flare. We live in Cental America so it is difficult.

Hang in there, know you have lupus, try to get daily low dose steroids. The shots did not work for me, either...big burst of energy for several days, then a week later terrible flare. Hope you find a way to avoid the strip lighting.....big hat and lots of block...long sleeved sunblock shirt, and enjoy the days between flares! They are the best! Good luck and know you are not alone.

[linz84]

hi thank you so much for all the replies its really appreciated sorry its taken me so long to reply back to you.

I would try the sunglasses inside at work but the only problem is no one knows what i'm going through apart from my manager so it would raise questions that i'm not willing to answer to be honest not many people know whats going on with me I don't really know whats going on with me the only people who know are my fiance, my mum and my manager. I just put on my happy fake mask on when I leave the house and mope about when I get home.

I am based in the lunch hall at work (I work at the before and after school club) which has 3 sky lights, 5 floor to ceiling windows with no blinds, two fire exit doors that are glass and four rows of strip lights that go the full length of the ceiling. I have thought about speaking to the school about the problem but I doubt anything would be done without a diagnosis.

I do wear sunscreen daily as the rheumy recommended I use it.

At my last appointment I took my diary, photos of rashes and my list of symptoms as I have always done and he basically said he doesn't like it when people bring lists because he made it sound like it looks like i'm obsessing over my symptoms but I explained to him that I need to write them down or else as stupid as it sounds I forget when i'm in my appointment and then I'd be angry with myself when I got home because it's a 6 month wait to tell him something then.

Haha i'm glad i'm not the only one I don't get called a baffling case though I get "your a medical mystery"

has anyone had any problems with balance/falling over?? I have fallen twice in the last 4 days once in work i was bent down with a child and just fell back i couldn't tell you how it happened just started falling back and couldn't stop myself and its happened at home standing up from the sofa i fell side ways into the wall and again had no control over it. but both times I've had a muzzy sickly headache and tingling mouth??

Thank you so much for listening I hope i've replied to everyone?