Barely Lupus

[AmyCV]

Hi,

I recently tested positive for antinuclear antibodies, and my GP, or regular doctor, has said that it's highly probable that I have Lupus. Meanwhile, I'm just waiting to see the Rheumatologist on June 22, to under go more testing and get a definite diagnosis. My GP is a DO or Doctor of Osteopathy, and she doesn't believe in prescribing immunosuppressive medications or steroids to me for Lupus at this time.

I'm suffering a lot and getting one infection after another. I was just getting over Mono, and was diagnosed positive for Epstein-Barr, when I very suddenly developed a nasty case of cellulitis on my inner right knee and on my right shoulder blade. My GP put me on Clindamycin and the cellulitis is drying up.

However, I'm still having a low grade fever every night with bad aching in all of my bones...and recently also almost excruciating pain on my ribs or rib cage. So I'm quite debilitated in the evenings, and even delirious in my mind from fever. I start to feel very sad and defeated during the evenings, and I can't seem to concentrate or think clearly. I also lose my balance at night.

I'd love to know about anything I can do to help me get through the evenings.

Thanks much!

[whisperit]

Hello again AmyCV,

I've just responded to your more general post about diagnosis.

As for your more specific question, I'm not sure what the answer might be. I find that my worst times during the day tend to be during the afternoon or early evening, when I get really debilitating fatigue - so that I can hardly lift a finger - and hot sweats and flushes. from a physical point of view, I haven't found much that helps, except a cold (iced) flannel. A bath is often useful too - I think it makes it easier for my body to thermo-regulate when its in a warm bath and warming or cooling is easily achieved simply y putting a leg in or out of the water! Psychologically, I grit my teeth and try to make the time pass with something superficial that doesn't need either mental or physical energy. But I am not suggesting that is a good solution. Is there any particular aspect of the evening that you would most like to sort out? x

[AmyCV in reply to whisperit]

Hello Again,

I'm so glad you brought up temperature regulation!! That is a huge part of what makes evenings terrible. I have gotten so used to bouncing back and forth from cold to hot that it just feels like a normal part of living, and something I assume most other people deal with. All of my life I was always much colder than anybody else I was with, and I always dressed for being cold. I still have that problem in the day time. But at night, my actual temperature reading goes up and down. I always run a low grade fever every night for various amounts of time. It's during those times that I become mentally delirious and begin to think strange thoughts that scare me, like jumping off my balcony! I have an anxiety med for that, but the Drs don't allow me enough of this medication to cover these "fits of desperate freight." And then I begin to worry about running out of all my medications. In the US, many doctors of all kinds are beginning to prescribe less & less medications, and simply taking people off meds that they've been taking for many years.

I also get the sweating, especially on the upper body and my head & face of course. I past the sweats now. It's approaching morning and I'm having one of my nights where I don't want to go to sleep. I have no idea what causes this. It happens about 2xs a month. But, I spent almost all of yesterday and last night sleeping. I had a Drs appt which tired me out. The smallest of activities wear me out completely. I slept for 17hrs straight through. After sleeping that much, I wake up feeling like I have no idea what year it is.

I like your ideas about taking a bath and having an ice cold blanket. That sounds lovely!! I want one right. I feel like that would calm me right down. I'm a bit of an artist so I want to teach myself how to do some needle point or other type of simple stitch work. A crossword puzzle has helped for a simple, not too brainy activity.

I'm just getting over some nasty cellulitis, which I've had to baby all day long, and it was scary because it took a long time to even begin healing. I don't have much visible inflammation and no edema, so when my knee suddenly swelled up like a softball.... That was really scary. So as I'm writing, I can see that I've had too much to worry about on my own, for a person with an autoimmune disorder. I see a psychologist regularly, but 3mos ago I became too sick to get out to see him. I don't have a huge support network because people think I look too good to be sick, and some have told me so. I'd LOVE to be able to touch another person and make them feel what I feel for just 15 minutes.

Thanks Much!!

[whisperit in reply to AmyCV]

hello again AmyCV, the temperature regulation is such a nuisance. I carry a bottle of ice water and a flannel wherever I go now, so I seem even more eccentric than ever. The cellulitis must be painful too. I developed severe phlebitis soon after diagnosis, and like you say, when something like that suddenly appears, it can be most alarming. (Although in that case, my GP was kind of satisfying - she took one look at my legs and said, "Okaaaaay. So I'll just give the hospital a call and see if they can admit you this morning!" - which at least reassured me that I wasn't over-reacting! Every day a new challenge...x

[AmyCV in reply to whisperit]

Hi Whisperit,

I uploaded a picture of myself but I don't see it anywhere. I saw it initially for a little while. Then it disappeared. Do you see my picture?

Thanks!

p.s. Is your name Whisperit because you have sensitivities to sounds/noises, light and smell & taste? Smells are the worst of those for me. But I can't tolerate any bright light either. I have nightlights everywhere and scarves draped over all lamps.

[whisperit in reply to AmyCV]

Oh yes, I see your photo in your other post, thanks. My name is taken from a song lyric, "Say my name/Whisper it". Luckily, I don't seem to have any sensory sensitivities. Not yet, anyway! That must be such a drag. x

[Treetop33]

I can't pretend to know what's up with you but I hope your GP is on your side and you get a full raft of tests at the specialists.

I had a whole range of symptoms from tiredness and foggyness to endless infections, raised lymph nodes, Gerd and chest pain, and my previous GP dismissed it (since they couldn't find anything, since they didn't test for autoimmune conditions) as psychological. I moved areas (to make me more healthy, since I thought London was making me ill - pollution, blah blah), got some extra joint pain and then they tested for, and found Lupus. It's nice to know there's something identifiable and I'm feeling pretty zippy on the Pred (tho' it's a short-term thing).

Just finished reading Dr Afrin's book Never Bet Against Occam, and he has some great advice at the end, which is, be patient and polite with your GPs, but also persistent. Keep asking questions, because what you are suffering is not normal. I wish I had, because then it might not have evolved and I might not have moved from my lovely home!

[AmyCV]

TreeTop33,

I'm so sorry to hear that you had to move away from your lovely home in London!! But that led to you finally being diagnosed. Is that right? Do you find a difference in the doctors now that you are away from the city? I'm living in a pretty big city and wondering because my doctor is very busy. I believe she has put me on high priority though, because whenever I call they can get me in the same week, day even depending on severity of issue or symptoms. I know others that see this doctor and they cannot get in fast like I do. She is just a really nice person and so it is impossible to not be nice to her, although I feel like she is moving very slowly with me in terms of trying to figure out the bigger problem. She simply keeps treating my symptoms and infections.

I live in a city called Scottsdale in Arizona and it has grown alarmingly. I've lived here for over 20 years and it used to be so easy to see a doctor, any kind of doctor. The whole of the US seems to be growing alarmingly in population!!! 😱😱😱😜

Also, I'm on this UK forum because I could not find any kind of forum like this in the US. Isn't that crazy?! I have mostly English blood (did a saliva DNA test for an adopted out sibling) and I am wondering if lupus is more mainstream over there than it is here, and if Lupus has anything to do with genetics.

[Chanpreet_Walia LUPUS UK]

Hi AmyCV,

Welcome to the LUPUS UK HealthUnlocked Community!

Flu-like symptoms, muscle/joints aches and pains, ‘brain fog’ and depression are all symptoms that are associated with lupus. We offer a free information pack that contains guides and factsheets on the symptoms and diagnosis of lupus as well as a list of LUPUS UK contacts and helplines that you can download or request here: lupusuk.org.uk/request-info...

Medication is prescribed for lupus once a diagnosis has been made. If you would like information on lupus and medication you can read our factsheet here: lupusuk.org.uk/wp-content/u...

Every month we post a new blog article discussing a particular topic with relation to lupus, you can view our blog articles here: lupusuk.org.uk/category/blog/

[AmyCV]

Hello Chanpreet,

Thank you for all of those specific links. I'm pretty good at finding info, but when you aren't up to par, sometimes just the searching wears you out.

I'm still battling my latest problem which is cellulitis on one knee and a shoulder blade, both on right side. This needs lots of babying. Just when it seems almost gone, I do some house cleaning and it flares up again. I've finished 2 weeks antibiotics so it's back to my GP I go.

I can't wait to see the rheumatologist finally on June 22!!

Best Wishes