[Sevvenn]

Hello there! I joined the forum as I'm pretty sure I've got Lupus. I'm 34, my name's Leah and I've had quite ill health ever since I was attacked by a customer at my work place last October. From November onwards it started- I had flu and a cold, and a chest infection with each but I just couldn't shake the last one. Fatigue set in and I'd come home from work, make myself a sandwich as I was too tired to cook and crawl under the duvet to sob my heart out. By January I couldn't do it anymore and walked out of my job. As well as being attacked and having no support from my boss (he even tried to dissuade me from reporting it) I'd been doing 2 people's jobs for 9 months and was trying to cram a 70 hour workload into a 40 hour week. My mind started to go, I couldn't concentrate and I kept making stupid mistakes.

I spent the next couple of months looking for a job and feeling something wasn't right with me. I didn't feel able to work and struggled with feelings akin to depression, I suppose.

Then came April, and on the day of my 34th birthday my life changed. I was having a weekend away with my boyfriend and closest friends to celebrate my birthday when suddenly I couldn't walk. To lift one foot in front of the other made me cry, and as well as that there was a slowing down feeling of stiffness in my hips like I was wading through treacle. That night in the hotel my fella had to lift my legs into bed as even trying to get into bed made me cry. I woke up the next day and I was drenched with sweat. I'd had a night sweat and there was a stain on the sheet the size of my torso. I'd also developed a ret, hot, raised rash on my face.

Fast forward 10 weeks and I'm waiting for my 2nd specialists appointment on July 17th. My doc initially thought I had Sarcoid as I had 2 raised blood tests, one an ACE and the other I can't remember. Chest x ray proved neg. Now I'm being tested for Lupus and RA amonsgt other things, having had 5 more bloods taken and done 2 24 hour urine collections.

My symptoms were these up until the end of May when I first saw the specialist:

Dizzy spells
IBS like symptoms
Occasional abdominal pain/bloating
Pain in inside legs-difficult to walk/life legs occasionally
Night sweats
Red hot rash on cheeks either side of nose
Joint pain/stiffness
Morning stiffness/backache
Weakness- not able to lift/open things as used to do
‘Slowing’ down feeling in joints when walking 20 minutes or more
Pins and needles all over body/head- like insects crawling
Heavy pulses/muscle spasms
Jabbing pains in jaw, elbows, collarbone, hips which can last hours
Sore tender breasts
Profuse sweating at minimal exercise/no exercise even if I don’t feel hot
Cold hands
Claw-like fingers after carrying heavy shopping-have to bend them back
White ends of fingers also- blood comes back 30-60 mins later and burns
Hard to concentrate some days- keep losing my thread
Get my words in a twist
Keep leaving lights on/oven on- forgetful
Trouble breathing, even after something as simple as bending down
Wheezing
Muscle burn across back, shoulders and arms on exertion with radiating heat and sweats
Keep wetting myself- need to urinate comes on so strongly I can’t get there in time
Cry at the drop of a hat, usually every day
Difficulty sleeping with pulses, pains etc going on
No energy most of the day but feel livelier towards evening sometimes
On exertion feel terrible next day- if I walk a couple of miles one day I’m useless the next


Ones which have manifested since then are:

Shaking left hand
Bumps under skin on arms
Dizzy spells have got much worse
Red rash on boob- starts off like broken blood vessels, then raises up off the skin like a spot or a bite, before going down gradually over a period of days (have had it twice in 2 weeks)
Swollen legs, ankles and feet- rock solid like an overstuffed sausage
Sores up my nose


So yeah. Life is pretty miserable.
I think I'm depressed as some days I can't even face going out, whether or not I'm in pain. The washing machine never stops. If I haven't peed myself I've sweated so much I change my clothes at least twice a day. The social haven't started paying me Incapacity even though it's been 6 weeks since my sick note went off and I'm having to sell loads of stuff on Ebay to get by. They sent me a letter on saturday asking me to reiterate a load of information which was on the original form- all because I do 3 hours voluntary work (when I feel up to it).

Do I get a prize for the longest post ever??? Ha ha :lol:

Look forward to 'meeting' you all

P.S I have underactive thyroid which is under control and have been tested for diabetes etc already.

 

[LolaLola]

Hello Sevenn, well you have certainly been through a bad time. I am disgusted by your ex employer.

You really do need to pace yourself, whatever is causing your problems this is not the time for two mile walks!
I hope your boyfriend is being supportive, and he is welcome here too if it would help him.

Let us know what we can do for you,
x Lola

 

[cad]

Hi seven,
I really empathise with most of your symptoms. Weakness not able to grip, hand colour changes and stiffness, back pain, all over pain, rashes I also have underactive thyroid. All of it really!!
I am in a really bad way at the moment too so i really feel for you its awful.

Are you on any anti inlamatories or pain relief at the moment.
If you mentioned this am sorry, my memory is terrible too, particulary with recalling text at the moment.
I really hope things improve for you. Lola is right you must try to minimise stress and rest as much as you can.

Good luck and take care.



Cassie

 

[Katharine]

Hello Sevvenn and welcome

I'm sorry to hear how poorly you have been.

You obviously have an awful lot going on indeed. Some of your symptoms could be related to something like lupus, others are far less common.

I think there are a lot of things that need dealing with here and I hope you have a good GP that you trust. I presume that if he suspects something like lupus he has run an ANA test which is the first basic screening test for auto-immune diseases?

There is also clearly a problem with depression for the moment. Maybe triggered by that attack you suffered or simply by the disease. Depression is a very common problem for people with auto-immune diseases and is a very real part of the disease for many people. Obviously, it also needs treating and certainly shouldn't be ignored.

If your GP really does suspect an auto-immune disease (is your hypothyroid auto-immune?) then he should be referring you to a rheumatologist. It is important to try and get a referral to one that deals with auto-immune diseases as they are very complex and many docs just don't know enough about them. You can post here in the "find a doctor" section to find a doc that specialises in lupus and other auto-immune disorders. By the way, if you do go and see a rheumy, don't say "I think I've got lupus". That often doesn't go down too well with docs. You could say "As I have an underactive thyroid, I was wondering if it might be something auto-immune" or "MY GP is wondering if it might not be something like lupus or RA".

I really hope you get some answers soon. You must feel very frightened and alone with all this.

Keep us posted on what's happening,
hugs :hug:

Katharine

 

[Sevvenn]

The doc did 2 blood test initially, once was the ACE which he said anything over 50 was a worry, and mine was 77, and there was another test I forget the name of but he said the normal level was about 5 and mine was 10, but I really can't remember what it was called.....my memory is shot at the mo- I can't even remember names of my favourite bands sometimes

What's the normal level for ANA, does anyone know?

At that point he made appt with specialist (general medicine) and after giving him the run down of all symptoms he said "I don't think it's anything sinister." Oooooookay! He then ordered Rheumatoid factor test, Sed, and full blood count. Can't remember the rest of the tests as too many abbreviations, but if anything comes back to mind I'll add it later

That was a month ago and I have nearly a month to wait until my next appt. I have to go back to my GP soon to see if he'll give me another sick note, in the vein hope I'll get some Incapacity money eventually. I'll also tell him about all the symptoms which have manifested since I last saw him- at which point there were only a few. He signed me off for 8 weeks before and I hope he'll sign me off a bit longer this time as I need to worry about getting well rather than money and stuff.

It's been a long road in getting my boyfriend to admit I'm ill. For the first 6 weeks or so (from April when things got bad) I had to struggle with feeling really crap and having him prodding me to get a job as we're skint. It's only in the last month since things have got really bad that he has shut up altogether about me getting a job, and has actually told his mum I'm ill. This is a major step as he's a bit of a mummy's boy and never usually tells her anything untoward- he didn't even tell her when I had a miscarriage 5 years ago and I have to keep schtum about that. He has also told his boss things at home are difficult because I'm ill, which again is a relief that he is talking to people about it. I think he was in denial for a time as if he chose to believe I was fine he didn't have to worry.

Now I can just relax and be ill (funny that that is relaxation!!) rather than trying to look for a job I know I have no energy to do.

I feel so useless. We recently moved into a lovely flat (that's a story in itself, I couldn't do a thing) and it has sash windows. Half the time I can't open them. I can't read aloud any more (to bf if find something interesting) as I get all my words in a twist. I'm sitting here in a living room strewn with things to sell on Ebay and various crap because I have no energy for house work.

To answer some questions: I don't think my thyroid is auto immune, or at least I've never been told it is. I take Thyroxine.

Although I'm well informed from researching on the net I'd never say to a doc "I think I have..." as I know that can get people's backs up. When my specialist asked how it FELT I said it feels like my body is attacking itself.

I'm on no painkillers at all, but I am on sleeping pills as my quality of sleep was so poor. Funnily enough a locum gave them to me when I went about a chest infection/feeling depressed in Nov. She told me I had to get over it and likened me to a child who needed to grow up (about feeling low) and as I sobbed my heart out she looked at me over her cup of tea like I was something fascinating on a slide under a microscope. Anyway, silly cow gave me sleeping pills, which I thought was lunacy at the time and I didn't start taking them until a couple of weeks ago. Now I can get through the day without a number of afternoon sleeps, but still sleep 11 hours before I feel anything like alive.

Sorry this is so long (again) but I've had all of this bottled up for 10 weeks now and no one else understands.

Thanks for listening.

 

[Katharine]

Please don't worry about letting it all out, it's far better to do that than keep it bottled up.

You also have to make sure that you don't ignore things and go back to your doc if things are not OK. It's fine to respect a check up date when things are going well but when they're not the doc needs to know that. Also, if you get any joint swelling, rashes etc in make sure to take a photo of them for the doc as they will most likely disappear the very day you're due to see him; Murphy's law.

I do know exactly what you mean about being able to relax and just be "ill". It is funny to say that, but we need to be able to rest and concentrate on just getting better.

I would insist though, that if there is any chance of something auto-immune going on, you should get a referral to a rheumatologist. They are the ones who specialise in such things.

Katharine

 

[LolaLola]

Dear Sevvenn,
Assuming it is a lupus like illness, you will improve once you start proper treatment. It can be slow though.
We have all felt as wretched and powerless as you. I promise it gets better but
you MUST make sure you get good treatment and ask plenty of questions.
A Blood test called CRP, C reactive protein has a normal value of 5 or less. That could be the one you had coming in at !0. It is a sign of inflammation but not specific enough on its own for diagnosis. (This is just a guess, I may be barking up the wrong tree). As for abbreviations etc. you will soon learn.

Thinking of you,
x Lola

 

[BrendaE]

Sevvenn my dear, despite it all you have retained a sense of humour! That is to your credit and will serve you in good stead no matter what your diagnosis is. Are you a Londoner by any chance?

Wishing you well.

Bren