symptoms of SLE

Allergies, blood and immune system
1

Hi sine i have been 23 years old i have been getting ill every few weeks. My mains symptoms are fatigue, i suffer with painful neck and shoulder and hips, and knee. I am in constant pain with this and take reg tramadol.

When i get a flare up, i feel run down, sore throat, runny nose, all over joint pains like flu, and i crash, i literally am floored . I find my legs and arms become weak and lethargic and i have no energy. these crashes were happening every 3- 5 weeks, and if i did anything strenous like gym, etc then i would crash after few weeks. This has got worse lately, and after a crash, i feel fatigued for 6 weeks, mostly during the mornings, i also feel flat, no energy, feel low in mood, low motivation. Then all of a sudden i will be fine again like the flick of a switch.

i am under a consultant rhematologist. My compliments are low and my immunoglubulin m raised, I have had loads of test, Ct, scans, etc.

i do suffer with irritable bowel, and do get raynaurds when cold.

I actually thought this was chronic fatigue syndrom as it does seem to be related to what i do. i can manage to walk dog daily, do light yoga 1 x week and i horse ride 1x week. But if i was to do high energy stuff- then i become ill.

i always get ill on holiday abroad, i get sooooo tired that i have to go bed by 9pm, i also am ill and drained when i get home.

swimming used to make me ill too, 1 week later i would have same symptoms of feeling like i was run down, i also feel freezing when i have a flare up.

so basicallly i get flare ups every few weeks, slight sore throat, runny nose, feel freezing, lethargic, fatigued, headache, fluey joint pains. i never have a rash.

i wok full time, but when i have a flare up i am sent home from work.

I have cut down on my activity over last 7 weeks, and not had a flare up since, which definately shows the link to activity.

my consultant wonders if its SLE, but i dont have the realtaed symtoms.

i still wonder if its CFS

he has referred me to a immmunologist now to see if he can shed any light on things.

just wondered if anyone else has these symptoms, i know nothing about SLE, but can someone tell me what the symptoms are

many thanks

2

Hi,

Some of your symptoms are linked with Lupus but also with many of the other autoimmune diseases. Not everyone with Lupus gets the facial butterfly rash or indeed any rash anywhere else. Your blood tests do support Lupus but you need to have a full Lupus panel which would include Full blood count, inflammatory markers such as ESR, CRP and Rheumatoid factor, also ANA (antinuclear antibody) screening among others. If you've not had these done yet ask for them to be done. An appointment with a Rheumatologist is essential as they will be able to make the diagnosis.

I was lucky and had a very supportive GP, still do although he is new to the practice! Despite having some positive test results and some but not all of the symptoms I was referred to a Rheumatologist after 9 years of constant pain and various health complaints. After listening to me and reviewing my test results and then examining me he diagnosed me with Undifferentiated Connective Tissue Disease with features of Lupus and Scleroderma, I also have secondary Fibromyalgia. My list of symptoms is very long: Joint pain in fingers and toes, also my wrists, ankles, knees and my neck; tenderness/pain on the boney prominences of my shoulders, hips and knees; muscle pain/tenderness over my neck, shoulders, lower back and thighs; dry eyes and mouth; Reynauds; foggy head; dizziness; frequent sinus infections; overwhelming tiredness and the most horrendous headaches - both migraine and cluster-type headaches centred around my left eye; wide-spread hair loss and generalised stiffness in the morning. I also get a rash on left thigh which always appears when the pain flares up, my Rheumatologist is not convinced that it's a Lupus rash! I also get rashes on my wrists and feet. I also have Telangectasias which can be present with Lupus but are more often associated with Scleroderma, as is the dry eyes and mouth, and Reynauds. In addition to the list of symptoms above I have constant pain in my feet due to one thing or another, currently it's plantar fascitis and inflamed tendons! So, you can see how it's so difficult to diagnose Lupus.

My blood tests results include raised ESR, CRP, and Ig M; low lymphocytes, positive ANA; and low Vitamin D.

Suffice to say he prescribed Hydroxychloroquine which has helped and in addition to the Amytriptyline and pain killers I am now feeling better for most of the time rather than feeling awful for most of the time. Please, do read the pages on Lupus on this site as well as those dedicated to Lupus they have an enormous amount of helpful information and advice.

Best of luck.

3

thanks you susan, my fbc,crp esr, ANA, connective tissue test were ok. he also did bloods for HIV, hepatitis, cryoglobulins etc and they were all ok. i do get dry eyes and mouth also, but think they rules out sjrogens for this. I do have low vitamin d too and take suplements for this.

not sure if connected but i am always cold, very intolerant to it. people laugh because i am sat with big thick cardigan on and its july, but thats me.

rheumatologist has just requested bloods for parvovirus, lupus anticoagulant, anti cardolipin and a coagulant screen which i had this morning.

he does wonder if its some form of suto immune disease,

its so strange though how activity can affect it, are you similar??

thanks

4

Hi, Nicola,

Yes, if I have a very busy shift or get moved to a much heavier ward I find everything gets worse and also if I do too much for too many days in a row I get really tired, like today! I've actually been doing a lot more walking in an effort to get fit (I can't to do high impact exercise as it knackers my joints in my feet and knees!!) but where it's been so sunny I am now feeling like I could sleep for a week and my eyes are very sore, my feet and fingers hurt too.

It certainly seems as though you have something going on with your immune system. Have you had tests to rule out Epstein-Barr virus, this can mimic the symptoms of the autoimmune diseases?

Hope they find an answer for you soon.

5

Hi yes I have had test for that and some other similar test too which were both positive for past infection

my haemophilia influenza epidemic was low too, so I needed boosting for that

cfs and sle have similar symptoms, but I do seem to have less for sle . He has referred me now to an immunologist in view of my compliments being low, and renal as EGFR 73 which I think is ok so not sure why am being referred for that.

my compliments have been persistently low, he initially thought I was fighting an infection, but it's been 13 years on/off of symptoms then got worse these last 12 months especially with the few crashes I have n then it takes me 6 weeks to get over it. Like you I can't do high impact exercises, I just do what I know my body can handle. Even walking hurts my hips if longer than 30 mins. I envy friends who can bike ride n jog , 

6

Antibodies not epidemic sorry predictive text

7

Hi,

Low complement levels are definitely linked with Lupus! From what I know from both my own experiences and from past patients' experiences every sufferer of Lupus or any autoimmune disease are very different. I believe that for a definitive diagnosis one must meet a minimum of 4 of the 11 criteria. One or two must be signs or symptoms and the others must be from clinical findings such as test results. I think your doc is doing all the right things, so hopefully an answer will be found.

The eGFR is a generalised reading based on a formula which can predict the likelihood renal impairment or disease, from what I've read it would seem that >100 is normal and under 60 is cause for concern, however, many factors need to be taken into account - urea and electrolyte levels, presence of protein and/or blood in the urine, diet, height, weight and age etc. I wouldn't focus too much on the eGFR reading at all.

Simply standing up in the morning hurts my feet but I will not give in to the pain as I have to do something to get fit! I go swimming too which has helped build muscle strength and stamina which in turn has helped alleviate some of the muscle pain. I was advised to try Yoga but that proved impossible as I can't get up from the floor without a struggle these days!! Riding a bike is out of the question as I had an ear infection years ago (and again more recently) which triggered a positional vertigo, turning my head to the right to look for traffic or pedestrians triggers an episode of spinning dizziness if I have an infection and I don't always know I have one until the dizziness kicks in, I don't fancy ending up under the wheels of a bus so I no longer ride my bike, besides using the brakes hurts my fingers! Jogging is for lunatics and show-offs!

Keep up your spirits.

8

thanks susan thats great, hopefully i will have the answer soon, its the not knowing thats a pain, and knowing what to do try avoid flare ups. Although less activity has definately definately helped me. Am hopefully figuring things out after 13 years of putting up with it.

thanks so much for your advice xx

9

You're more than welcome, Nicola. 

Wishing you well.

x

10

Wondered if youd got a def diagnosis yet.  l have simular symptoms to yours. lve always had frequent bouts of severe fatigue, poor energy, no stamina at all. l can sleep easily day time, on worst days it feels like l,m drugged and fit for nothing, other days l can do a bit with some level of energy, and on those days l push myself to get things done that have been left undone, l manage whilst doing it, but often very tired and achy next day-s.  lve been waking with severe nagging pain in my lower hips, under butt into top of legs. l have experienced this before but now more chronic. l also feel cold very easy, often waking after dropping off to sleep feeling chilled, even in summer, and can get very cold hands and feet, dry mouth, sore eyes, today a bit dizzy with it, Mornings on waking are terrible, so achy and stiff l hobble around like someone very old, tired with it, can take me hour to start functioning. l can also get flushed and headachy with it. l do get allergic rhinitus, and intersticial cystitus, allergy to some meds, so know my immune system isnt great.  Appetite not great so lost 2 stone, but overweight prior. Still looking for solution, and gps not that thorough. 

11

Hi Lynn, thanks for your message. You sound very similar to me. I still have no diagnosis but have been referred to immunology I go 7th September, also referred to renal due to low compliments n EGFR of 73

So will keep u posted xx

12

You do have some lupus flares but sounds like stjogr to coz my mum has tge dry throatn dry eyes ect n shes been diagnosed with that but thats similar to lupus ... I would say warm bath in the evennig with a stress release bath wash would help u to sleep and to wake up slightly less aching it helps me alot n ive hadlupus myself for 4 years n on alot of diffrent meds for otger things too .

13

I also think redbull helps me once evey couple days gives energy

14

HI nichola, be really interesting to see what immunology discover. l personally think a lot of us have underlying immune problems, so many of mbs with long standing severe symptoms of long standing and not getting diagnoses. l know from intersticial cystitus it took me years to get diagnoses, even with one obvious symptom, frequency, still  gp didnt pick up on it, went down gyny, hormone phycalogical road, Doesnt do to get anything thats a bit rare and get quick diagnoses, unless youve a very good gp or can afford private testing.  Dont know about you, but my fatigue seems to be getting worse, Not long till you see immune people, l hope you get result that helps, let us know, x

15

hi lynne, i just wanted to update you, i saw an immunologist last week, and she said it isnt lupus, i had another flare up, and my compliments are still low with raised immunoglobulin. she is doing bloods to check for chronic viral infection such as epstin barr virus and CMV virus, however i have been tested for both which showed i had positive test but both inactive, so it cant be this. i am still not feeling great since flare up, i go back in 2 weeks again for results,

16

Not than any of us want a disease, or another one, but its so frustrating having severe life affecting symptoms and no diagnoses, so no treatment, l saw gp this week, told me my xray showed only minor problem, quite flip about it, as some meds seem to be, you wonder, with so many with simular and no diagnoses, ,so then back with severe symptoms again, feel down and angry, lke being a hamster treadmill, but we keep battling on with it,yesterday l was fit for nothing,so fatigued sleepy bored frustrated, today a little better, more pain than fatigue today, but l can do things at least, more worth to day and  getting a laugh where you can, going to try the red bull next, so live in hope,

Also hope you get results that help.  

17

Hi lyn i hope ur having a better time hey i think redbull helps me boost energy not everyday but i have it every other day suppose its better n more pleasant to have then more painkillers as im on the strongest thy get .. I motivate myself on task that i try get myself to do so i dont think about this nasty illnesses i have .

18

i agree, i have been under every consultant going at the minute for last 12 months. never thought of tryign red bull, maybe i should give it a go. its horrible being in pain, mine is my neck and hips , back at the moment its flared up, living off tramadol, and other pain killers, but not really helping. I sit at a desk all day so that aggrevates it grrr.

i hope you get your diagnosis soon, i am feeling very frustrated, i still wonder if i have CFS, yet the few who i mention it too, poo poo it due to my low compliments. xx

19

l get bad hip pain, sometimes lower back pressure pain with it, but nagging low hip, last night up and down out of bed, what with that and dog jumping on and off the bed, covers all over, woke feeling like hell, siezed up, but to my amazement l do wake up and loosen up in an hour or so, guess l,m lucky l dont have to function and get to work early, and know how much pressure there is at work, my sons diabetic and often feels like c..., but has to go in, desk job also, l guess it will aggrevate your hip pain,siezes it up more than movement. Someone in post above and someone l know said red bull is quick fix, l,ll try that, try anything once.  l,m sure its such a relief for you when weekend comes, best wishesx

20

hi l will give it a try, lve tried copy and they dont help, but someone l know said red bull does give you a boost, even if its just the odd one now and again, its worth trying, and l cant take much in pain killers as lve a bad stomach and get nausea easy. Today l woke with severe hip siezing up pain, although wrecking l personally dont find it as bad as the fatigue, that feels like being drugged when youve not took anything to account for it, and it felt a wasted day to me, l did so little, Today did a few things, quick trip out and few light garden jobs, but its doing, made some flapjacks, put everything thats good for you in them, berries, dried fruit seeds, nuts, l should be bouncing, thatll be the day, maybe after red bull, live in hope,  but did do something with the day.today, posative at least.  Will see and let you know, think Nicola,s trying it also, we live dangerously, best wishes to all.