Where are we? Well 14 days out from my GP telling me that he felt that my symptoms and bloods indicate that I have Lupus and well.............to be honest I am not sure if I was better off with my ignorance.

Yes like all I have good days and bad. Yesterday (considering the past 3 months) was up until around 7pm, a particularly good day, then things turned bad with alarming speed. But over the last 20 odd years I have become accustomed to that and just grimaced and got on with it.

Now though I am not sure if the knowledge has heightened my awareness of the pain and discomfort or that this flare is deeper than most that I have suffered and my pain barriers have been more convincingly breeched. It also doesn.t help that my partner watches me so very carefully that I can no longer hide my pain, with her I fail most of the time in turning my back to hide my grimace, she insists on knowing (and with me) trying to understand. I had over the years built up some impressive pain resistance to all but the most intense of my individual symptoms to the point that when I was feeling well I could take risks with my body, and yes hurt it quite badly sometimes and manage the onset of any bumps and bangs that I incurred (about which I feel another memory blog coming on so keep your eyes peeled).

Right now though, where once I would have individual problems that I could manage and in some old way control whilst everything else settled down and le me get on with it, now everything (indeed more things most every day) seem to be joining the party and I cannot gain control of any of the individual elements, I feel like I am giving in to it, I feel helpless..................................................and I really, really don't like it.

6 Replies

  • Adrian...I am sorry that you are feeling bad. I totally understand not liking any of this. So many symptoms, how do I take care of it all. On days like that, I sit down, try to calm myself down mentally, and drink a lot of anti inflamm tea. I live on Ginger tea daily, and pound it when I feel like a mess. I also take naps and really rest. I hope you feel better soon, and able to get up and fight again...Were your numbers high on lupus, and have you tried any kind of treatment?

  • Oh no Natura, don't show me any sympathy! I don't deserve any, after all I have, for the past 25 years or more, been my own worst enemy!!

    Bloods, well according to my now ex-GP, were pretty un-remarkable for me (his words not mine!) apart from rather obvious Lupus markers, and no I didn't have the forethought at the time to check out what obvious Lupus markers were, nor indeed what for me meant. However I did find out that I had thrown the same results on numerous occasions before, and that prior to my last op some 2 years ago the indicators were high enough for biopsies to be ordered whilst I was under, the results of which, for some reason do not appear on my records (perhaps they forgot!).

    Meds, well, my abscesses are pretty lively at the minute so all I am taking is antibiotics to discourage any further secondary infection and Tramadol for the ever increasing pains, most of which I have had before many times in isolation, rarely though have I succumbed to them all at once.

    All that I wish for right now is a successful diagnosis, and to get the right meds to start to make me feel fairly normal, and then onto my next target which would be to set up doing something mad with myself to raise some funds and awareness for this illness.

  • There is a lupus run this weekend. I found out about it too late to start a fund raiser. But, I am also hesitant, as I worked for a non profit fundraising organization, and found that the money went to the CEO's salary and other people. I don't know that much of it goes to the actual care of the people with the disease or research. I would rather do my own fundraising , and give it directly to the people in need or the scientist studying. Good luck..

  • I ran a dive charity and diving school for a number of years in aid of providing scuba to disabled and disadvantaged children, I did it all off my own back including the fundraising because of the very same issues you highlight. make no mistake if I chose to raise funds for this I would find a way to make every penny count and be paid directly to where it is needed most.

    I don't waste effort or money where I can avoid it. lol

  • always better to know. There is medication that can help control your symptoms such as plaqinel. you can also take special measures when you get a cold or illness to keep from getting more serious side effects.

    I found out four years ago and at first was relieved to know what was wrong with me. then I went through a period of freaking out because I knew. Now 4 years later I have come to an acceptance. I try to listen to my body and be gentle with it and also be kind. I exercise when I can and I rest when I need to. I try to eat healthier foods and other than that just kind of go along with the program. It is what it is and in some ways with acceptance I can usually tolerate and manage my symptoms better than I did before. Have you been referred to a Rheumatologist?just remember the knowledge is to help you take care of your body not to give in to the disease.

  • Dear Adrian,

    I understand that your diagnosis has not really seemed to have been a benefit. You are feeling understandably helpless and this does affect you and many others because you want to feel in control and be able to manage your body in a way that is not possible.

    I wonder if you have thought about why you need to hide your pain (and possibly your feelings) from your partner, who seems very concerned about you. How do you think she feels when you turn your back on her so that you can grimace alone? How would you feel if your partner behaved in this way towards you?

    It is very difficult saying this when there is only the written word. I am not being critical of you. I suspect you want to protect your partner in some way - and also protect yourself from being perceived as helpless. This is a very difficult and painful situation and I noticed that you said to Natura that you don't want sympathy - because I think this makes you feel even more helpless and powerless.

    Perhaps you and your partner can talk about what is going on because I believe that when we feel understood and supported, cared about - and able to care for others - this provides an important psychological function, a feeling of security that we are not going to be rejected. There is something about feeling or being helpless that really gets to you and talking about this aspect may be very important to help you deal with what is happening in your body.

    If the pain is not going away, you need to return to your doctor and talk about adequate pain relief.

    With good wishes,


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