Frustrated .

[Callie]

I was at my Rheumatologist appointment last week, my other half came with me for support. I saw the Lupus nurse yet again (She is really nice but l have not actually seen my consultant for 2.5 years, tried to explain with hubby's help that my muscles particularly in my legs are weak even with physio, climbing stairs are energy zapping , doing my hair makes my arms ache, my GP asked me about me if l had Lupus arthritis as my joints hurt at the moment more in my wrists, elbows and hands, but because they are not visibly swollen when attending lupus clinic this was ignored, yet l have a letter from 2004 (Prof Hughes had written it to old gp practice that l had Palendromic Lupus Arthritis and still its been ignored. she noted that my legs were swollen and red. Low and behold she went off and came back with consultant he has ordered and MRI on my back to see if l have spinal stenosis and l am now taking Mepacrine 100mg alternate days (Unlicensed drug) l did mention to consultant as he was there that Prof Hughes had said in a letter that l had Lupus arthritis and it was like l had not spoken, any advise or experience from my lupie friends would be welcome. Gentle hugs to everyone. x

[LupusKaren]

Hi Callie, do you get a summary of your appts that are usually sent to GP, and copied in to you? If you do, I would wait to see if your raised points are mentioned, if not, then I would make an appt to see your GP, and request that he or she write to the Consultant and mention it.

[Callie in reply to LupusKaren]

Thank you Lupus Karen for your reply, l have a form to request all my Rheumatology hospital records, so fed up right now, its so soul destroying when you sit there, they ask how you are so you tell them, only to feel that it has either gone in one ear and out the other or that they have listen but not heard what you have said.

But l will see what they write to my GP.

[Kerrclan]

Hi Callie. I can understand how you feel. I too suffer severe fatigue and get weak upper leg muscles, and aching upper arm pains most days. Obviously this affects most personal activities dressing, hair care, driving, going upstairs etc... I was advised by my consultant to adhere to graded exercise program : daily gentle walks for 5 minutes , alternate days, then increase to ten 10 , then increase to15. It does improve fatigue if you follow the advice and pace your day. It may seem ridiculous but it does help muscle tone. Even on my worst days I still walk even five minutes. There is good physio advice online if you simply google Graded exercise. I don’t even bother to dry my hair most days as it is so painful but I accept it’s all I can manage. Life with Lupus is frustrating in general. I think once we are given a diagnosis we are expected to experience all these random pains and aches and have to get on with it. I think it is good that you are on medication now which should improve your skin symptoms. Worth noting that drugs can be notably slow to improve symptoms so perhaps your GP can suggest pain relief to cope with limb pains. Hopefully your MRI won’t be too long. If symptoms don’t improve keep GP updated until your next Rheum review. Don’t Be too hard on yourself! Take care

[Callie in reply to Kerrclan]

Thank you Kerrclan. At the moment l attend Physio every few weeks with a program that she has set me, l also try to get out most mornings weather permitting with my dog, then l have to come home and get ready for work, l am a school matron / nurse, l only work part-time could not manage full time lol, but some days l have to go up and down stairs to give medication, my headmaster is understanding and allows me to park outside school buildings, so my exercise program is enhanced so to speak, but it was the physio who advised a walking stick as even with all this she feels my muscles are weak. Would so love to be able to take full advantage of having a new hip. The medication is a replacement for Hydroxychloriquine as it gave me mega headaches on top of those l already get.