RA or Lupus Flare up - pls help

chile168
chile168 Member Posts: 384
I have SLE as well as RA and in constant flare up only problem I can no longer distinguish between the two and getting really really angry.

Please help.

Eve

Comments

  • helpline_team
    helpline_team Posts: 3,037
    edited 30. Nov -1, 00:00
    Dear Eve

    You might want to consider the following -

    Is it really necessary to distinguish between the two considering the symptoms are so similar and both need managing in a similar way?

    Is getting angry really helping or exascerbating your symptoms?

    Did you know that anger, anxiety, and most other negative emotions lead to stress, which is going to make all your symptoms much worse?

    I realise it is a very difficult, frustrating and possibly frightening time for you right now, however, it might be worth focusing your energies on finding positive ways of managing the situation for example through relaxation methods, etc. It may even help to talk about it to one of us. If you would like some information on the two conditions and ways of coping with the situation please feel free to give us a call or PM us your postal address for an information pack.

    Best wishes,

    Simona
  • chile168
    chile168 Member Posts: 384
    edited 30. Nov -1, 00:00
    Hi Simona,

    Thank you for your reply.

    I understand they are very similar and treated similarly. Although it doesn't matter to other people, it matters to me.

    Im trying to relax but it difficult when Im in constant pain, not being able to do the things I want, life completely changing from active to non-active so it matters to me to know which of my illnesses is getting worse so that I can speak to the rheumatologist about it. I can prepare myself.

    Angry?! of course Im angry as I don't seem to be getting answers to my symptoms, just flipping medication which unfortunately carry risks. So either way I go I can't win. Which of the two lesser evils do I chose - medication v RA????

    Sorry about the reply but is how I feel.

    Eve
  • helpline_team
    helpline_team Posts: 3,037
    edited 30. Nov -1, 00:00
    chile168 wrote:
    Hi Simona,

    Thank you for your reply.

    I understand they are very similar and treated similarly. Although it doesn't matter to other people, it matters to me.

    Im trying to relax but it difficult when Im in constant pain, not being able to do the things I want, life completely changing from active to non-active so it matters to me to know which of my illnesses is getting worse so that I can speak to the rheumatologist about it. I can prepare myself.

    Angry?! of course Im angry as I don't seem to be getting answers to my symptoms, just flipping medication which unfortunately carry risks. So either way I go I can't win. Which of the two lesser evils do I chose - medication v RA????

    Sorry about the reply but is how I feel.

    Eve

    Dear Eve

    Thank you for your posting. One thing that may help is if you keep a diary of your symptoms including what they are and when and how they are affecting you, in this way you will have a list of these to take to your rheumatologist. By doing this they will have a clear picture of your symptoms and you can talk to them about the best way to move forward with your treatment. It is not unusual to feel angry and frustrated when diagnosed with conditions such as these especially when we feel we are unable to do the things we want to do. If you’d like to let off steam then feel free to contact us on the helpline. I hope this response has been of some help.

    Best Wishes
    Dawn
  • chile168
    chile168 Member Posts: 384
    edited 30. Nov -1, 00:00
    Hi Dawn,

    Thank for your reply which I find far more productive unlike the first reply from the helpline team as Im ill and not stupid and felt the reply was patronising. Sorry.

    My reasons is finding a bit more for example, I get with Lupus
    Rash around mouth, v-neck, neck and arms
    Allergic to the sun - photosensitive
    Chronic fatigue like nap attack and physically cannot keep my eyes open.
    Ulcers in nose/mouth. Tongue looks like is been cut by razor blade.
    Headaches and low grade fevers
    Hair loss which at the moment is really bad
    Dizziness
    etc.

    Just not sure if any of the above come from RA and would be of great help to know more of the symptoms of RA. Although the internet can be a great tool it can also be very scary and I don't want to read too much into it and thus increasing my fears. I would rather get advice from those experienced in this field.

    Once again thank you and keeping a diary is a good idea. I take photos but do have difficulty in talking to rheumatologist and time is limited and feel symptoms are dismissed. I find it easier talking to rheumy nurse as she doesn't rush me out of the door.

    Thank you in advance.

    Eve

    I have SLE, Fibromyalgia, RA, IBS and the rest too long to go into
  • helpline_team
    helpline_team Posts: 3,037
    edited 30. Nov -1, 00:00
    Hello Eve
    The symptoms you describe are more typical of Lupus except the chronic fatigue which is also associated with Fibromyalgia and with RA if your inflammation levels are raised. Do you know your ESR & CRP results? Always worth keeping your own record of these.

    RA affects people in different ways but the most usual symptoms would be pain and often swelling in the joints. When people have a flare they feel extreme tiredness and generally unwell like having a really bad dose of flu.
    RA is an unpredictable condition but with medications people can feel well for a lot of the time.

    You're right, the internet can be a scary place so maybe leave it alone for a while. I hope some of our regular forum users who have RA will respond to you and tell you how they manage.

    As you get on well with your rheumy nurse she sounds like an ideal person to talk to about all this.

    Best wishes

    Val
  • chile168
    chile168 Member Posts: 384
    edited 30. Nov -1, 00:00
    Hi Val and thank you.

    That's what I thought. ESR and CRP are normal according to rheumatologist letter but have synovitis. Feet and hands constantly swollen. I did post regarding this in LWA and everyone says that it changes from area to area which has left me and one other person confused.

    One more question, I suffer with really bad dry eyes and told this was due to Lupus, however, can it occur with both SLE and RA?

    I have also had eyeball cysts in a cluster and think that it was due to steroid injections but will be asking ophthalmologist end Feb.

    Thanks Val

    Eve
  • helpline_team
    helpline_team Posts: 3,037
    edited 30. Nov -1, 00:00
    Hi Eve
    Yes you can get dry eyes with RA. Talk to your ophthalmologist as there are eye drops called artificial tears which can help.
    Best wishes
    Val
  • chile168
    chile168 Member Posts: 384
    edited 30. Nov -1, 00:00
    Hi Val,

    Thank you for your reply and will speak to my ophthalmologist. I have been given an appointment for Saturday 27th Feb which is strange cos I thought they only did apps Mon-Fri at hospitals.

    You are going to think Im a real wimp but I don't like putting tear drops into my eyes and just about tolerate when other people do it for me so thinking of trying out the Optrex one advertised that you spray onto eyelids - less scary lol.

    Once again thank you for clarifying things for me.

    Take care xx

    Eve