hi, i am 18 years old and currently half way through a diagnosis for hypermobility and lupus. I started having symptoms 5 and a half years ago and have had 2 rheumatiologist 4 semi diagnosis ranging from raynauds syndrome to arthritis but nothing definite! in the past year I have deteriorated massively to the point where I cannot walk unaided and now have extremely attractive walking sticks. I am in moderate to server pain everyday having to take a number of pill ( morphine tramadol hydroxychloroquine the list goes on). I have been taking H for 4 months now and the only thing I noticed has improved is the swelling. is this normal? or should i be receiving greater benefits from this medication? However i find that even being on a combination of morphine and tramadol the pain will not go away!
I have spent most of this year bed bound and get the pain all over apart from my neck! my back hips shoulders and knees and hands are hypermobile which is where i get the server pain. I also notice server weakness in all limbs cant even pick up a cuppa! this can be intermittent but makes day to day tasks very hard! also have muscle spasms but unsure as if this is due to the illness or side affects of the painkillers.
my doctors say they are "monertiering" me however they fail to notice that as every week goes pass i can do less and less and i am constantly tired and dont seem to be improving. i have many questions to ask none of which have been answered by doctors for example will improve over time or get worse? and will i be able to live a seemingly normal lifestyle in the future?
When i have a flare up it can last from a couple of days to weeks and it can make me feel paralyised for want of a better word where i cannot lift my body up as i dont have the strength, is this normal for the condition?
I hope that someone can answer my questions or offer some advice it would be much appriciated thank you for taking the time to read this
from the distressed teenager stuck in bed!
Written by
larap
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I can t offer you any advice but am going thru exactly the same as you with the doctors. Mine started off as arthritis and raynauds disease. i was diagnosed with fibromyalgia in 2005 and things got worse 2 years ago which began with pain in my ribs
and a swollen abdomen. i was never given any answers to my questions or a reason fo symptoms- dr's dismissing everything i told them. from weight loss everywhere else except my stomach which was getting more swollen, bright red skin-butterfly rash on my face (lupus).hand so painful i cannot do anything and gave up my interests of cross stitching.knitting and sewing.now i struggle with walking my dogs and doing housework. only found out I had gallstones by seeing a private dr as my own refused to do anymore scans.having just had the op -my stomach is more swollen and shows no signs of going down even with meds .my rheumy told me I needed to diet as gained 11 kgs in 7 years and i told him that I cant diet as I don't eat much at all-just breakfast and a small meal at midday and taht any weight gain was abdominal and beyond my control.like you I need to go to bed and sleep as it s only way to relieve pain.seeing my dr on Wednesday and will ask him the same q's again in hope to get answers.
I am globally hypermobile and was diagnosed with lupus when I was an infant and a teen....but nobody actually let me know, so i've had a lifetime of managing SLE sorta sideways....I've also had spondylosis and raynauds all my life, which became simultaneous wth erythromelalgia during perimenopause. I'm an older bird now (60 in oct), but I remember vvvvvvv well what it's been like coping from youth with the sort of pain & symptoms you describe. I did spend years on NSAIDs & heavy durty Rx pain killers, which never really helped much...just spaced me out, really. I also know what you mean about being bed ridden and perplexed by weakness, spasms, forms of paralysis. And I can relate big time to your distress, + how perplexed you feel by your doctors' attitudes. SO....Am feeling for you big time. Your post paints a very clear picture of your ordeal. Sorry to say, this sort of thing is fairly familiar to some, if not many, of us. I admire your courage and sense of humour: I too often walk with, haha, "very attractive walking sticks"!
It's good you've found Lupus uk and this forum. If you are interested in contact with others your age, I think it would be worth contacting Paul Howard of lupus uk (he is here on forum regularly). Also, perhaps you've already discovered the hypermobility organisation, which has also helped me HUGELY: their archives & info leaflets are excellent! They helped me understand how I might begin to get a grip on how hypermobility seems to overlap with autoimmune conditions like systemic lupus. They are also very good on diagnosis, treatment/management & prognosis
Hypermobility Syndromes Association
hypermobility.org/
Information and articles on the Hypermobility Syndrome. Details of current research, FAQ, discussion boards and a section for kids and teens.
Re your ?s:
I have been taking H for 4 months now and the only thing I noticed has improved is the swelling. is this normal?
Yes, hydroxy's effects seem to show gradually with the first signs of improvements from the 3rd month onwards, and I felt that by the 6th month many of my symptoms had the edge taken off. But, as with you, my drs & I continued to monitor my symptoms, and gradually , by trial & error, we discovered that 20mg nightly Amitriptyline helped, and, most recently, three low dose (10mg) 4 week prednisolone tapers per year, have helped a lot. In my case, SLE treatment began just over 2 years ago....and I'm beginning to see a sorta light at the end of my own version of the lupus tunnel
When i have a flare up it can last from a couple of days to weeks and it can make me feel paralyised for want of a better word where i cannot lift my body up as i dont have the strength, is this normal for the condition?
I can't say this is normal, but it is familiar to me. You'll be making sure your drs know about this. Meanwhile, along with getting used to how your Rx affect you, you'll have been learning how to pace yourself so that what strength and stamina you can summon up gets directed in a way that helps you to get a bit of a life: you'll be rationing activity, learning to take the rest you need, but, hey, you gotta do all you can to grab some fun whenever you can. Meditation and the Alexander technique have helped me a lot. And Pilates & yoga too, even when things were really limited. An anti-inflammation diet and supplements might also help...
will improve over time or get worse? and will i be able to live a seemingly normal lifestyle in the future?
In my experience, it's very likely things will improve...especially if you do your best to take these early stages of diagnosis and treatment one step at a time, if you are patient with yourself as poss, become as self aware and self regulating as poss, communicate as effectively as poss with your drs....and MOST important: keep your wonderful sense of humour!
Well, I've gone on & on. I hope some of this hits the spot with you. Take care, and keep your chin up. If you ever feel like private messaging, I'm here
Have you looked at your diet? I and my family have hyper mobile joints due to Ehlers Danlos syndrome. I also have Lupus. We find certain foods are inflammatory like red wine, coffee, red meat etc. Also avoid all fizzy drinks, especially the artificially sweetned ones. I hope this helps.
Keeping fit is very important to support your joints with good muscle tone. Try swimming at first as this puts less stain on joints and build up gradually . Talk to your Gp he may be able to prescribe a gym. Things will improve given time and your ability to take control of the illness, putting positive steps in place, setting targets etc. Only you can do it!
If you think it would help, I can send you one of our information packs about lupus. Just send me a private message or email paul@lupusuk.org.uk with your name and address.
There are a couple of support groups for young people (16-24) with lupus in the UK. If you're near either London or Cambridge you might find it helpful to go along and get advice and support from other people your age with lupus. If you're interested in either of the groups I can provide you with more information.
Hi larap, i to have hypermobility in every joint even my face, i have lupus sle, pars defect, hernia etc the list goes on its a horrible feeling when you feel lost in the dr spin being given a answer that doesnt answer your question. I have gi problems also with my lupus, if i can give you any advice it would be to try and talk to your rhuemy, i had an appointment last fri where i found it so hard to explain, i burst into tears even said sorry to her. She then did the unexpected. She said never be sorry, go home write down everything you feel when your ill and bring it to me tomorrow, so i did. She realizes i need more meds, along with the cocktail im already on, she thinks i have developed peritinitus and is refering mr to gastro people, also starting me on steriod injections.......she told me a little bit of advice, she said it is as hard for me to understand how you feel and where best to treat you, as it is hard for you to explain how you hurt, it would be like asking u to explain childbirth in a 100 word essay. She appreciated my letter which inabled her to follow my pain journey with me.....try this x
Good reply, willowwag: my upper GI stuff has been lifelong and really hard. I totally get what you're saying. This sort of GI stuff is apparently typical of we hypermobile types. And haha, my gastroenterologist had the gall to say it was functional dyspepsia! Even after he'd diagnosed chronic oesophagitis & gastritis! Your rheumy sounds wonderful!!!! Where do they inject your steroids, though?
Hi barn clown I do feel for your suffering the GI complaints like myself, along with the battle of lupus sle, my rhuemy is starting my steriod injections in 2 months. That would have given the hydroxy 6 months, so im not sure where she will put it i imagine it could be tummy area, really havent a clue. Barn clown you have hypermobility also dont you, have you by any chance had problems with gallstones, as i did was woundering if we have found a link. My rhuemy is really lovely, felt like a right wuss crying but she was so kind,
Im on hydroxy but i really dont feel its helping also on anitrptiline x hugs
Gallstones haven't turned up for me YET......am wondering: have you checked for gallstones link on:
Hypermobility Syndromes Association
hypermobility.org/
Information and articles on the Hypermobility Syndrome. Details of current research, FAQ, discussion boards and a section for kids and teens
Am so glad you've got that great rhuemy!
The effectiveness of my Rx has increased as more oral meds have been added over the past 2 years.....plaquenil + Amitriptyline + low dose pred tapers....NOW am guessing mycophenalate may be added next.....
I had very bad gallstones over 10 years ago, they looked like a bag of 5p coins, so they took the gallblader out, years later they found i have lupus sle, involving internal organs, so in nov the steriod injections start hopefully to help x fingers crossed x good luch with your meds its like a pick a mix trying to get on the rights ones that help each individual case. Hugs barn clown
ive been think back to who in the family i could or may have inherited it
well my maternal grandmother had a red cheek rash gallstones and what she called lumbago and rueumatism
as well as diabetise of old age and various operations one for a cyst on her ovary another for gallstones which turned out to be a disintegrated gallbladder due to them so i think she was never diagnosed but was possibly lupus
she also had heart issues was on digoxin and had mini strokes for 20 years . so i thnk thats the inheritance . her sister developed another autoimmune disease call buliuous pemphigus . not sure if theres a link there
ive got the mypermobile bit as well as gut issues that i suspect are gallbladder related but still waiting on gastro appointment . its all a bit of a myriad of symtoms that im trying to get to grips with what was your gall stone symtoms barn clown .
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i imagine it could be tummy area, really havent a clue. Barn clown you have hypermobility also dont you, have you by any chance had problems with gallstones, as i did was woundering if we have found a link. My rhuemy is really lovely, felt like a right wuss crying but she was so kind, 
told i have lupus then i dont then i do, driving me crazy, why does this keep happening
Does anyone have autoimmune hepatitis as well as lupus?
At what point do you need to go to hospital?
does anyone have stiff person syndrome as well as lupus ?
Cant move in the night, am so stiff
