seen Rhumatologist for first time, wasn't expecting this...

[charley07]

I went for my first appointmet with my rhumatologist, and she told me i had to have several bloods to be taken again, and advised me that i may very well have Arthritis of 'both' feet, my doctor has my test results , but will not discuss them with me for a further 4 days, as i had to make an appointment to see him..i am in a lot of pain with my 'migraines, aching joints, and muscle pains, swelling of feet/hands ' (that itch like mad and burn, especially at night, so interrupts my sleep pattern, I am bruising easily to, my Nails Break, my hair falls out in clumps, and he knows of this, but still i am suffering as i have had no report of what type of Lupus i have, so no meds have been prescribed, what should i do, as this 'flare up'is making me depressed also...which contributes to my symptoms, I also have memory loss...(past 3 weeks).

[Elle-26]

Hi Charley07, Ive lost nearly all my hair so can sympathise, I now suffer fevers, migraine, dizziness and nausea, including brain fog. I was told that certain immune problems do cause problems with body temperature. Ive also notice when the itching then burning starts I know that part will inflame Was diagnosed by my Dermatologist as having Lupus Erythematosus with Systemic symptoms & Discoid rash .... Thing that worries me is you never know what or where it will attack next ... The biopsy the Derma took found me also Photosensitive which I believe is why I lost my hair and symptoms were rapid ... I was working out side in the sun and inside under energy lighting it is one of the things that causes my flares ... Got to see Rheumatologist next month for the first time :/ as my joints are inflamed and constant fatigue no energy not to mention it feels like I've been beat up especially in the morning ... I'm waiting for that one good day lol they do say you get them x- Got lots of meds now ... on anti malaria tablets every day, painkillers, Iron tablets (2 years and counting) Amitriptyline and Colofac .. now may also have to take Steroids ... Lupus can affect people differently, some have it mild and don't have many symptoms ... xxx

[charley07]

Thank you for your reply Elle-26, I have also forgot to mention that i have fatigue, and yes , i do feel like i have been beat up in the mornings... but just try to carry on regardless, the only down fall here, is that i have not been given the right diagnosis to state which of the 'Lupus's' I have, so i am still waiting..My GP has been second lot of Bloods, and will not discuss them over the phone, and i have to see him on 'Monday', hopefully i get something prescribed to me then, not unless further tests need to be taken, Its been over 9 weeks now, ad i still am in the same position i was before asking these people for referrals and help with these symptoms, its driving me crazy, as every day household chores cannot be achieved without the help from my partner(who is also suffering from very bad arthritis), I also have 3 children to run around after, the youngest being only 2, its very difficult as i cant even play, or do the easiest of things with him without some kind of pain i my arms/wrists/legs/ankles etc..... I do hope now , that my GP helps me, and all this suffering, as its driving me absolutely insane with worry, and anxiety/depression ... also i have slight seizures, which i cope with and deal with in silence, wish me luck, as i dot need to suffer as much any more , i didn't ask to be this way...and i dot see why my GP wont do something to help asap... Thank you again for you reply, and i hope you have may more 'Good Days to come...as i wish for to! XxX

[Elle-26 in reply to charley07]

Dont let it get you down... Its taken nearly 8 months to diagnose me, thats because I kept on and on, I really couldnt cope with the symptoms anymore.Its been a struggle as a lone parent with a hyper 5 year old lol. I saw a Dermatologist who said that I had Alopecia and sent me away, ignored the rash! I kept going to my GP and telling him about the rash, fatigue etc but he said I was depressed and offered to give me anti depressants lool x I did shout and say I wasn't depressed... then he said I was stressed and dismissed me ( I can laugh now) However, I did have my bloods taken which showed Anemia again ... GP left the prescription at the desk ( Im sure he thought I was neurotic) ... Then this summer I felt so ill and weak and my scalp neck face inflamed with a nasty rash on top. I went to see another Dermatologist (thank God!) she did a biopsy there and then .... and took my bloods ... Finally a diagnosis ... but sadly rapid symptoms due to the heat/lighting which I was unaware of and how dangerous it can be for those with Photosensitive Lupus ... My physiotherapist wrote to my GP same time as my Dermatologist ... however I made sure I saw a different GP lol ... He was great and gave me everything to try to keep me pain free and relaxed ... Now I wait for an MRI and nxt month see the Rheumatologist ... Had to give up my career GP signed me off straight away ... my face was inflamed over my right eye, felt like it had dropped (10 mins of sun exposure while driving the day before)... was so scared. I suppose all my frustration is because Im not in control of it .... My GP did say ... once the meds kick in you'll have some good days.. bless him .... Good luck on your blood results ... try not to worry as worrying doesnt make it disappear Think positively and if you don't get no help from your GP then change him/her ... Im glad I did xxx Take care x

[charley07 in reply to Elle-26]

Thank you, I will try not to worry,all the best,take care to,

[Lesley-chard]

Hi

I had the same with my rheumy who put me on steroids which didn't work wouldn't let me go back early before mt next appt didn't call back or reply to fax from my gp by the time appt came I'd had a referral for st Thomas waited 3 weeks for it and been do I would strongly recommend changing to someone more understanding. I've been on plaquenil and should be starting methotrexate next visit really hoping by Christmas to be feeing more human.

Best wishes

Lesley