Lupus questions

[EllsBells591]

Good afternoon,

My doctor has been helping me with some ongoing symptoms, and following a positive ANA test has now referred me to a rheumatologist, theorising I may have Lupus.

Anti-nuclear factor level POSITIVE - Titre > 1:640

ANA PATTERN SPECKLED

My symptoms are:

- mild arthritis in my neck, back, sacrum and knees and the associated joint pain. Lower back pain stopping me from walking as much as I'd like, or running at all (although my knees put paid to that too) is what prompted me to keep going back to the docs

- Pain which goes from my hip right down my leg into my toes (not all the time, happens now and then)

- fatigue

- dizzy spells but just less coordinated in general.

- forgetfulness/word confusion

- low (just under the threshold) blood count over the last 10 years or so. Mainly WBC, RBC, neutrophyl, lymphocytes and platelets

- hair loss

- petechiae

- dry eyes (I've always described it as tired eyes)

- palpitations

- fingers go blue when cold (my family told me I looked like a smurf when we were in a water park in florida once and got caught in a tropical rain shower)

- Feet which are constantly cold despite 2 pairs of socks and fluffy slippers

- anxiety

Does it sound likely I have it?

I also have Hashimotos. Thyroid is as optimally medicated as it can be currently.

I was wondering if lower back pain is a symptom? Or the sciatica type pain which goes all down my leg for that matter. My lower back ache is so much worse when I am standing about or walking. I love walking, and it's stopping me from going exploring like I used to, unless I load up with pain killers first, but even then it doesn't seem to help if it's bad.

Also I'd like to know if the tiredness can be overcome if it is down to Lupus?

Thanks in advance,

Ellie - I know the referral will take a while so thought I'd ask a few questions first.

[Turquoise-1]

Hi @EllsBells591,

How rotten for you having all those life-altering health issues to deal with, just one is bad enough!

I have many of the symptoms you mention, including being a ‘Smurf’ 😂 & various orthopaedic troubles & hair loss. (Dermovate Scalp Treatment has encouraged patches of alopecia to regrow & hair to thicken …. Hooray!).

However, my back problem is not connected to having Lupus. I injured my lower & mid spine aged 14 (gymnastics/competitive dancing & sport), fractured a neck vertebrae in an accident whilst on duty years later. I also have scoliosis & spinal osteoarthritis. I’m Hypermobile too…..

I’ve had spinal surgery & have 5 diseased/degenerative intervertebral discs. Had countless physio sessions & still do it at home because it definitely helps me. I sing the praises of most NHS Physios. I’ve also been practising Yoga for 35+ years which has helped to keep me bendy, flexible, strong & (for the most part), mobile.

Finding out what is causing your back pain & sciatica is the 1st thing I’d do; How can something be treated if the cause is unknown? I paid privately for a MRI scan 35 years ago, so at least I had an explanation for my symptoms. I’ve had numerous MRIs & an array of scan types ever since. Even if there’s no definitive remedy, I always prefer knowing what’s causing ‘it.’

I am speaking from my own experience, both personally & professionally.

Years ago, back problems would be referred straight to an Orthopaedic surgeon, these days often they’re the last person you see, if at all!

Many GP practices now have their own Physios who can prescribe a variety of pain meds & if necessary (or you request it), refer to Advanced Physio Spinal Practitioners at a Muscular Skeletal Clinic. These will assess, advise & can refer you to a Community Pain Clinic, Anaesthetic Pain Clinic or for scans/x-rays. They can also prescribe various meds.

For me, my back problems are ongoing & managed accordingly or sometimes not if there’re ‘off the scale!’ Exercise/sport/fitness has been a big part of my life since young childhood but these days I simply am unable to walk as far or with the same vigour, my running is ‘as & when’ but has reduced to a short jog. Surprisingly, despite all my prolapsed discs, dodgy spine, mangled shoulders, arthritic knees & neck I still Hula Hoop with no ill effect. (Thanks to my strong core & abdominal muscles)…. ⭕️ ….

Fatigue is a debilitating nuisance for which I’ve found no absolute answer to….pacing does not help me at all. I cram in all that I can when I’m able to, sleep & rest when I have to.

Metatone Tonic or Feroglobin Plus (with Vit D, Ginseng & CoQ10), are my go to ‘pick me ups.’ Not a cure for fatigue/tiredness by any means, but they help me to push on through. There can be so many reasons for tiredness which are totally unrelated to Lupus so I don’t think there are any hard & fast answers…..🙃

SLE (Lupus) is diverse & complex but I think you’re in the best place for support, advice & camaraderie here on this Lupus UK forum.

All the best to you 🌸

[EllsBells591 in reply to Turquoise-1]

oh my goodness! It sounds like you are doing amazingly with everything life has thrown at you 🙌. I have had various accidents (falls from horses) which I have wondered whether they have been there cause of my back problems at least, but I have had MRI and CT scans on my back and I believe all they showed is the arthritis. I do have a Tarlov cyst in my S2 which apparently has been there a good while as it is eroding the bone around it, but due to its placement should only cause unilateral symptoms and mine are bilateral. The body is a complicated beast isn’t it!

Thanks for the reply, I will have a look into the tonic and I am currently doing a structured program to try and strengthen all the muscles round my knees and back to see if that helps. Love that you still hula hoop!

All the best ☺️