Good afternoon

just thought i would ask a couple of questions about Lupus. Does anyone suffer with stiffness in hands, ankles or neck with Lupus?

Has anyone got a consultant to admit depression and anxiety is cause their brain involvement and that its not just brought on by symtoms of suffering with a cronic illnes? I look back at my old photos and do not recognise the person I have become. I was fantastic untill the birth of my first child.

19 Replies

  • yes.. but consultant unsure of my dianosis. seeing her monday. was diagnosed with inflammatory arthritis for 3 she is considering lupus??!!

  • Hi summer

    thank you For taking time to answer me.

    I have been diagnosed with Lupus. The stiffness is new to me and getting worse. I was wondering if it is RA instead.

  • Hi Rhodes62

    Sorry to hear how much you've been suffering. You can get stiffness with Lupus as Lupus falls under the rheumatoid umbrella...all about the inflammation. RA and Lupus are often both treated with Hydroxy so it would probably be the same treatment plan whichever diagnosis you received. My hands and ankles 'seize up' a lot and at times I get spasms in my neck forcing my head downwards...a scarf helps (keeps it warm...although imflammation doesn't usually like heat!?!)

    Symptoms can get worse throughout the life of a Lupus sufferer but there is usually something you can do.

    Could you go back to doc and mention the worsening symptoms and ask if there are any new approches you could try together to reduce the severity?

    Hope you make some progress, take care


  • Hi steadilymovinforward

    Thanks for taking time to answer and for your advice. Sorry to hear your hands ankles neck seize up. May i ask if it was a progression or sudden on set. Have you notice the more you use them the stiffness gets worse ? I also have a deep deep constant ache in the front of my lower legs towards the outside. This can cause me to hobble with pain at times. When I mentioned it to my consultant she just shrugged. Is this again inflammation ? Does the "inflammation " do permanent damage?

  • Hi Rhodes62,

    I developed problems in my hands and neck bit by bit after all my problems started in my if it was moving upwards. It did get really bad but then it eventually improved. I get it back from time to time. I think this sort of fluxuation in symptoms is quite normal in Lupus, although can obviously be distressing. You may find that it clears up for a while, it may however take a year or so but then clear up for years after that. I haven't experienced constant aches in the front of my legs but we can all experience slightly different symptoms still with the same cause, joint and muscle inflammation. I hobbled with stiffness at the back of my calves for two years. As far as I know it's not dangerous as such, just unpleasant. However, you are entitled to ask your doctor to confirm this and put your mind at rest if it would help you to feel more comfortable. Hopefully things will improve but you may find you get used to the unpredictability of it all and find your own way of coping that is best for you - trust your own intuition - you know your body better than anyone. Perhaps research anti-inflammatory diets, but inform your doctor about any decisions.

    I have noticed that sometimes stiffness gets worse the more I use hands etc. As far as I understand, when you are experiencing problems you don't want to do too much to aggrevate an area that is already inflammed (sometimes it's unavoidable as we need to walk and use our hands!) however, you don't want to become overly cautious and avoid using your joints altogether as you will lose muscle tone and flexibilty...Gentle exercise, take it easy but do as much as you can.

    ...More importantly lay your cards on the table with your doc. She should be supporting you. Open up and tell her it's important to you that she helps you understand what is going on inside your body. If she is unable to do this, ask for someone who can.

    Don't ever feel guilty about asking for more support from your's what she's there for....good luck! :)


  • Hi steadilymovinforward

    Thank for your support much appreciated.

    For me Lupus and its symptoms are like giving birth painful and daunting while happening but soon forgotten when I feel well. Issues with doctors go back along way. You are right doctors are there to help but some times I think they forget that fact. I feel like paying for an private consultant just to explain.

    Take care Jill

  • Hi Jill,

    I'm exactly the same...when I'm not flaring (which is rare), I think....'what was all the fuss about?!'...and then it comes back and bites me on the butt!

    Paying sounds like a blooming good idea. I had trouble for yeeears with last myself a private doc and I tell you's surprising how your whole life can change just because somebody finally treats you with respect! really did make a huge difference I wish I did it sooner


  • Hi Steadilymovingforward

    Your reply has just made up my mind for me! :-) x

  • Great!....good luck!!

  • hi l suffer with stiffness in my ankles and neck and back, l also get what l think is a dead leg feelling in my right leg it makes my leg week and hard to walk on

  • Hi straylady

    Sorry for the delay... Thanks for your reply... Sounds pretty much 'normal ' for Lupus... I was worried stiffness may not be a lupus symptom.

    Hope you feel better soon

  • I get a lot of pain in my joints especially my neck. it helps a lot if you wear a scarf around your neck which i do. My legs are getting stiffer each day. they feel very heavy and i walk very slow. I take paracetamol as i can't take anything stronger. The doctors say that it is arthiritis. I have a body scan every year because i have had a transplant. I have just been diagnosed with avascular necrosis of the hip which is associated with lupus and transplants.

    Sometimes my hands don't feel like they are mine.My ankles swell also especially through out the day. Your not alone. Take care.

  • Hi sandwiches

    Thank you for taking time to reply. I will take on board the scarf advice. I know what you mean, when you say your hands don't feel they are yours. It's such a nuisance never knowing what's around the corner.... Hope you feel better soon. Take care.

  • ive read everyones answers with interest as I too have a lot of daily stiffness; worst being knees and hips. as some of you know my rhuemmy is pants and just tells me to live with it (wotever the symptom is). I deram of winning the lottery so I can get listened to and believed.

    I send you a hug and a spoon x

  • I LOVE that! Rheumy is "pants" too......but on the NHS it is bl....dy difficult to change to another one!!!!

  • Hi caninecrazy

    I have my fingers crossed for you regarding lottery.

    i have decided to raise the money by selling some things on e bay, as I do not have the money to pay for the consultant. i will feel better if I pay for the time needed for a consultant to listen to me and answer my questions. Like steadilymovinforward said To have a little repect shown to me will go along way.

    Thank you for the hug and spoon.... Right back at you xx

  • There are specialist Lupus Clinics around the Country. It should be possible (and less expensive) to be referred to one of them. We ARE supposed to have more choice under the new NHS system......aren't we?????

  • I am beginning to feel i am Just a number in the NHS system unless you are on deaths door.... Still laughing thou !

    Thanks for your reply. Leeds is nearer to me but don't know if I can ask for a referral from my GP

  • Hi all - there is a Lupus clinic at the London Bridge Hospital, there are a lot of specialist doctors there who have a lot of experience. It is private, but worth every penny. All the doctors work in the NHS so maybe possible to have follow up in a local NHS hospital after. Wish things could get better not worse................

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