does anyone have stiff person syndrome as well as lupus ?

[nerri]

hey there everyone, my name is nerri and i am new to lupus uk. i really need some support with learning to understand and live with lupus. The last two and a half years have been life changing, consisting of tests, doctors and specialist appointments. In march 2011 i was told i have stiff person syndrome, and on monday i was told i am now going to be treated for lupus too. Does anyone have stiff person syndrome as well as lupus? would appreciate any input X

[Jude65]

Hi nerri,

I have not heard of the term stiff person syndrome but do know that lupus , when active makes me very stiff indeed. I see it as part of lupus and not separate from it.

[nerri in reply to Jude65]

hi jude, thanks for your reply. stiff person syndrome is a rare neouroligical illness, numbers show one in a million have it so very little people have heard of it. it is an auto immune disorder which is progressive and can only be managed and not cured. it causes very painful, tightenings, spasms and cramps in my legs, back and tummy and can be very disabling. However, due to my long list of other symptoms it was thought that another condition must be present and was labled cronic fatigue syndrome. however due to futher investigation it has now been found that it is likly to be lupus. The specialist said that there is a known link between lupus and stiff person syndrome. Therefore i had hoped to be able to talk to others in my situation. Thanks again for your comment, hope you are well X

[Jude65]

Hi Nerri, thanks for explaining this condition. I am so sorry that you have got what you say is a very disabling illness and now on top of it you are likely to have lupus. I do hope that you find a treatment for lupus that really helps you and lessens your symptoms.

Yes, after many years of suffering with the lupus I am finally on an immune suppressant drug which has really helped to reduce my pain and stiffness in my joints and muscles. I have had physio - marvellous- and am becoming more active again. I can't believe my good fortune.

Hope you are having a good day.

[nerri in reply to Jude65]

HI jude, its lovely to hear that you are doing so well. Finding the right medication is half the battle i think. However, my body is so sensitive that i suffer bad side effects from the medication that the doctors have tried so far, to help with the stiff person syndrome. So fingers crossed i will have more luck with medicating the lupus. My specialist has recently tried me with steriods which i did find helpful, however i did suffer from a few side effects. I am now due to start Hydroxychloroquine, after a meeting with my specialist on monday, so fingures crossed for some good results. I did have a number of physio sessions last year but my consultant with drew me as it enhanced my symptoms and left me unable to stand at all. I guess what helps one can hinder another.

Thanks again for your reply and your positve comments. I am so glad that you are doing so well. X

[NiksB]

Hi Nerri,

I used to be so active then one day a shower was to much and it used to take me a hour to get moving in the morning because of being stiff and uncordinated, i thought it was lupus but the weird thing for us is every person is different and so is bizarre illness. I started antimalaria pills and it took about year and half to get the meds right and now i cant say im fantastic but unless i have an infection i least can shower without going back to bed.. so i know stiffness is a lupus problem but there is alot of auto immune illness with that problem.

Good luck and keep us posted its great to learn new things...

[nerri in reply to NiksB]

Hi nike,thanks for your response,it helps to know im not alone. It dosent make sense how it just comes out of nowhere does it? I was also very active, always running around, never enough hours in the day. I am a university graduate and a mum of three. Then one morning i woke up with pains in my legs and fatigue so intense it was unbearable. That was two and a half years ago and things have esculated.ever since. I am 31 years old and have to use a stair lift and a wheelchair. I just find it hard to understand how one day i was fit and healthy and the next WAM . However, i almost always have a smile and know how lucky i am to have three precious children and a husband who treats me like an angel.

I had a meeting with my lupus specialist on monday and he has decided to start me on Hydroxychloroquine, is this the same medication that you are taking? I really could use a helping hand with controling the fatigue. It gets that bad where i am unable to sit up , talk or drink from a cup, but i do have good days too. Must always look on the bright side.

Hope you are well and having lots of laughs and smiles. X

[loopylady]

Hi Nerri, keep strong, remember there are many of us out there able to support you given our similar experiences, every single one of us has a range of different symptoms during our illness which makes us very unique!

I do remember from being ill from the age of 15 having extremely painful cramps particularly in my calf musles, they went into such strong spasm that I was then unable to walk as I couldn't put my heels down. I don't remember ever having cramps in my stomach and back but the pain you are describing in your legs is very familiar. I also remember extreme stiffness in my wrists, I had very little movement in my wrists whatsoever which would result in extreme pain.

My range of symptoms continued until the age of 17 when I was eventually diagnosed, my condition too involved neurological problems where I was diagnosed with left-sided chorea(inflammation on the base of my brain) which represented itself with involuntary movement on one side of my body. My arm would fly up above my head, my speech was slurred, my eye and mouth was twitching, my fingers were dancing and my leg was not getting the message from my brain to move so I would drag it along. I was in rather a bad way and trying to cope as best I could as a teenager!!!

I am pleased to say that having a large dose of prednisolone brought the inflammation down and my lupus is managed very well now with prednisolone and immunosuppressants.

Lots of Lupus love

[nerri in reply to loopylady]

wow what a time of it you have had too. I am so glad that you have responded well to your medication. i havent found anything that will help me yet, as my system has become hypa sensitive and reacts badly to whatever medication i try. However, i do find steriods quite helpful, dispite the side effects, but my consultant is reluctant to leave me on them long term. So he is stating me on Hydroxychloroquine to begin and see if this helps.

Thankyou so much for your positive feed back and for making me see that i am not alone. X

[NiksB]

Hi yep hydroxxychloroquine I take 2 aday but it takes about 3-6 months to see if there is any improvement, i also take clonazepam at night to slow down the trmers,amitriptyline to help me get to sleep,meloxicam an anti inflimation and a whole load more think im up to 21 a day not including vitamens. I had botox for 20 ish years but im not convinced because its not a solotion its a band aid every 3 months.

At times i do resent the pills because my days are govened by them but they do give me a sort of day. I didnt ever really get answer for my tremers as they started at 15 they called it dystonia but as time passed i know that wasnt the answer.

Im lucky i have a loving husband, we decided to not have kids due to both of us having a life threating hereditry illnesses.

I am frustrated i have worked the most of my life and im struggling to think of what i can do for a job, i dont mind training (i have done retail then trained to be a preschool teacher which i loved but docs said dont work with kids anymore due to infectioons) im 41 and want to do something worthy for the next 25 years. I have lost 3 jobs due to illness and want to have a job thats illness proof ie work from hme part time, something flexible i know im asking alot because i think everone would be doing it otherwise. I am after ideas.....

Good luck nerri hope to chat again and stay positive......

[nerri in reply to NiksB]

well nike i think you are an inspiration, you should be very proud of what you have achieved so far. I understand very much how difficult it is for you to work, as my career has been put on hold since my illness began. Infact, i became so ill that my husband had to give up his job and is now my full time carer due to the number of difficulties i have just getting through a normal day. Its not all doom and gloom as he is a wonderful person to be around and i have my beautiful children too. Im sorry to hear that yours and your husbands health has stopped you from having a family. i dont think i would have had children if i had know what was going to happen to me. My illness has caused many tears with my children, especially my eldest. Livvy is 10 years old and can clearly remeber what i was like before i became ill. You see, i had my children before my sympyoms began. it was 8 weeks after having my third child that i began to have symptoms. I was so relieved that we had finally managed to have the family i so longed for. Having the children was a very bumpy ride as i lost three angels whilst trying to complete our family. so each of my children i as see as a blessing and are the most precious treasure that i have.

I cant believe how much medication you have to take. My body has become so sensitive that it reacts to whatever the doctors try. Its very frustrating as i wish i was able to take something to help myself. All i am able to take at the moment is diazepam for the cramps, cyclizine for the sickness, omeprazole and cocoamol. I have recently had a corse of steriods which i did find helpful but again had alot of side effects with those too. it was only last monday that my consultant decided to treat me for lupus, so it is very early days for me with regards to medicating lupus. I havent started the Hydroxy yet, as i have to have an eye test first and then met with the nurse to go through side effects and form filling as the consultant didnt have time to go through it all with me. I completly understand this as i fully appreciate how little time they are alicated for each person. So just waiting for an appointment with the nurse now. I just wish he had explained alittle about lupus to me as i have no understanding of it. So i found lupus uk on the web and paul gave me the details to this site. To be intouch with others like me has been worth its weight in gold.

I truly hope that you manage to sort somthing out with your work, if i come up with any ideas i will be sure to let you know. I really do understand how frustrated you are feeling, but like you say try and stay positive.

Wishing you lots of laughter and smiles, nerri X

[NiksB]

Hi Nerri I think you are a star you have it tuff but you are hanging in there and i wish i could give a giant hug to your hubby and kids... I found on the lupus uk website they sell books etc. one book i bought was a hundred question and answers which i gave to my mum to read she said it was easy to understand. Another book which is great is living with lupus i can give you details if you cant find it on amason. I found these books where brill because as questions crop up you can look them up rather than stewing on it or reading the net which will scare you to death. I dont know if you have tried votarol gel, tiger balm white or red, rescue night remedy to help sleep.Sometimes i can use them other times i have to wash them off because they feel like they are burning. Since being on th antimalaria pills my sskin has stopped crawling and itching so much but i still have problems if my legs get hot.

Now my way of getting through the week is by treats ie.. best cake with a cup of tea. play your favorite song as loud as you want and sing, if im watching good programme i have a dance to the intro music ( i like hawaii fiveo) i look at youtube for funny animal sketchs etc so what ever rocks your boat dont forget to have some fun (its difficult to think of haveing fun when you feel rough but its the most important time because you will feel better without pills).

So be happy...

Niks

[NiksB]

Hi Nerri

I had abit of mind fog and got the name of the book wrong derrrr. The right name is coping with lupus by robert h phillips it is american but still usefull and it is recommended reading because some of the books are incorrect or scare the living daylights out of you. If you have found a good book id love to know even one on neorulogy (im dyslesic).

Good luck

[nerri in reply to NiksB]

hey niks, thanks for all the info, i will deffinatly have a look for the books. I am greatful for anything that will help me understand and get to grips with all this.

I have passed on a big cwtch from you to my husband, he said it was lovely that he is thought of too, that its not just me going through this, it is us! Sometimes it think it can be harder for the person without the illness, having to watch the one they love suffer and not knowing what to do to ease the pain. I can speak from first hand experience as my mum has been very ill for the last 20 years. It breaks my heart to see her this way. My dad passed away was i was little so my mum is alone. I used to care for her but since iv become ill am unable to offer her any help. The scary part is that i am like a mirror image of my mum, health wise i mean, but the doctors have not diagnosed her but have me. I find this very difficult to understand, she so desperatly needs help. She has been house bound for 6 years now, and can only make it out for hospital appointments, and then is extreamly poorly due to the physical strain of the car journy and sitting in the wheelchair. Mum has an appointment with another neurologist today, so i am praying he will be able to help her.

As for me having fun, my children are what gives me enjoyment. Just watching them play, smile and to hold them are the moments i love the most. My eldest daughter is part of a swim team, on the times my boby is strong enough, jason my husband, takes me in my chair to watch her. It is the best feeling in the world, i get a warm fuzzy feeling in my tummy. I am so very very proud of her. In the summer i find that there is nothing better than sitting in a quite little park, watching my children play. To feel the warm breez and to hear their laughter is the best medicine. Not forgetting being with jason and drinking a yummy hot chocolate, sure does put the worlds to right.

I must say it is so lovely chatting with you, to have a place to vent is good for the soul.

I hope you are doing ok and managing to figure out your work dilema. Still no ideas there sorry.

If i find a good book, other than those u have told me about, i will let u know. I havent looked at any yet, a little apprehensive of what i will find. I am the same with the stiff person syndrme that i have. When i was first diagnosed i looked it up and it frightened me half to death. I know i have to get a grip on it though as i have always believed that knowledge is power, dont u think?

Sending you love and smiles as always, nerri X

[NiksB]

You have had it tough,

My mum has Marfan its heriditry it involves heart lungs bones and eyes and i have it aswell, her brother died at 45 from heart problems and her younger brother isnt 100 percent but my mum is like superhuman she has heart problems but you wouldnt know she wears me out listening to what she gets upto. My mum and dad have a whirlwind of social activities the reason im telling you all this even thou i have given her books shown her web links been with me on hospital visits she still does not get it. If she says what have i been upto and i say only one load of washing because i felt rough she'l say why havent i been out? what am i cooking for dinner? how do i expect to sleep if im not busy? and there are times when family can push all the right buttons that you what to slap them silly. Saying all that i live 10 minutes down the road from them and i wouldnt want to be any where else and i think she thinks she is being helpful but....

I do think knowlegde is power but when you are ready to read it. I often find i avoid doing things and have wonderfull excuses because i cant deal with somethig that day, i dont know why one day to another makes that much diffierence but like the job front i thought i could do some training while im waiting for life but ive had a mean cold this week and i feel barely able to get up dressed and sit down again so the thought of deadlines fills me with dread and i know i would kick myself stupid to start something and not finish so maybe ill wait until the spring.

I think your right about more difficult for family to see you go through it. My husband is a god send but i do know its tough on him he is very protective of me and knows often when i feel terrible before i do (he says because he can read it on my face). I get very annoyed when i cant do something round the house and he dosnt make a fuss and does it which i do appriciate. He has a tough job in london and then has to deal with me when he gets hme think he deserves a gold medal just for coming home each night.... I have a daft dog which keeps me company he is the lazist dog in the world and hates the rain but loves warm showers weird hey..(had a coat problem so had weekly baths thats when we found out he will get in the shower cubicle). So thats my life......

many hugs

Niks

[nerri in reply to NiksB]

hey niks, have sent you a message to your inbox.

love and smiles

nerri x

[NiksB]

See you there...Niks

[tremarel]

Hi Nerri, I to have a similar condition, they said its very similar to Stiff Mans Syndrome. It's called Neuromyotonia, my muscle are going hard, they go into spasm I also get nerves firing with it that causes pain. If I cough, sneeze or something spooks me I go rigid. I've had carbamazapine & all the drugs that they use for this but has not made things any better. I also had plasma exchange. I don't take anything for it at the moment only painkillers. Sometimes i find a small amount of alcohol helps me relax down a bit. My stomach & abdomen is so tight at the moment, it really pokes out too. It's huge. I've had lupus for over thirty years & kidney transplant for sixteen years..It's annoying because they said if you have an autoimmune disease then it's very likey you will aquire more, so annoying ! I also have immune defficiency so to boost my immune system every week I do immunoglobulin infusions & now they told me I have fibromyalgia on top of it all.

I do really feel for you with this problem, it's so painful & debilitating, how long have you been suffering with this ? Has it affected the whole of your body ?

Please keep me posted on how you're doing I am really interested as I've had this problem for many years.

Regards Hayley x

[nerri in reply to tremarel]

hi hayley, its lovely to hear from you. i have been hoping so much to be able to talk to someone with both sps and lupus. what is the difference between sps and neuromyotonia?my consultant made the link with lupus through the sps. like you said hayley, once you have an autoimmune disease. then more are likely to follow. i became ill almost three years ago. i was fit and healthy, until 8 weeks after my son was born i woke up one day and WAM, i got sick and have continued to get worse since. i was firstly diagnosed with fibromyalgia and then CFS/ME. it wasnt until march that i was diagnosed with stiff persons syndrome, due to a very high anti GAD result, 2000 plus. it was only a few weeks ago that my consultant made a link with sps and lupus. so now im having to deal with that to. unlike you hayley, all of this is quite new to me and i would appreciate very much any advice or words of wizdom seeing you are similar to me.

as for my spasms, you are right hayley in that they are very painful and disabling, i am only 31 and having to use a wheel chair. when my spasms first presented, they began in both my legs. movement, over exertion and being cold are my triggers. for me over exertion can be having a chat with a friend or drinking a cup of tea or on a bad day sitting up in bed. as time has gone buy, the spasms also affect my back and tummy, and for the first time this evening i had spasm in my chest, shoulder and arm. it restricted my breathing and scared my husband as he could do nothing to help me. we have learnt through our journey of sps, to have a degree of control over my spasms. i move, or he moves me in a way that will minimize them. however they can be unpredictable, so when my legs spasm, my husband knows to bend both my legs and bring my knees up to my chest and holds me till it subsides. as time is going buy though, the spasms are becoming more difficult to deal with, especially when in the upper part of my body as i do not know how to break the spasm. how do you get through your spasms hayley, do yours occur regularly? the only way i can seem to minimize mine is by constantly resting.the more exstream the fatigue, the worse are my symptoms. my energy levels are almost non exsistant. is this the same for you?

but despite it all i am still smiling, its early days for me and i hope to find a treatment that will help.do you find the immunogloblin helpful ? up until now i have been scared to have it as i have sticky blood so puts me at risk of a clot.

it would be really lovely to chat with you again hayley, its reasuring to know that i am not alone in this.

sending you love and smiles

nerri

[tremarel in reply to nerri]

Hi Nerri you must be in so much pain bless you. Your poor husband too seeing you suffer so much.

Neuromyotonia is the nerve sheath being damaged and the nerves then fire at the muscles sending them into spasm. It's so horrible. I don't know which is the most painful the firing or the spasm. As you said it's very difficult to try to relax your mind to calm the spasm down. It is very strange with me though as I was tested negative for gad antibodies. My consultant in here in Wales even sent me to see a top consultant at the neurology hospital in London and the did say I was a very rare case. It started with my left arm the bicep was going really hard and bulky . It then started pulling in and looked really deformed, when it spammed up I just couldn't do anything with it. It has eased off a bit there now but my fingers are all curled in. I found gradually it has moved all around my body now. My butt cheeks are hard and taught now and as I said my tummy I find when I eat it's worse too. Some days my chest is tight now too. I 'm finding walking hard work it like the more you try and move the tighter you go. Do you find that ?

As you said some days can be worse than others. Cold weather doesn't help also the fatigue. I find with the fibromyalgia too I just have to sit in the chair like zombie some days. Every part of me hurts even the clothes I wear. The fibro seems to act up with the change in weather patterns. My body can let me know when the barometer changes before the change happens, very odd!

Anyway Nerri I don't want to rattle on about myself anymore but if I can help you or you want to ask me anything please be in touch.

God Bless to you and your family.

Regards Hayley x

[nerri in reply to tremarel]

hi hayley my heart goes out to you. i hope you are ok and managing to have some good times despite all that you are trying to cope with. my mum is very much like you. she also has fibromyalgia and it was suspected that she to has SPS. however because her antigad levels were only 200 plus, here consultant wont diagnose sps and therefore will not give her any treatment. my heart breaks for her as she is in so much pain. have you had an EMG, my mum is awaiting an appointment to have this done so they can once and for all clarify whether or not she has SPS too. have you tried Diazipam to help relaxe your muscles. its first line treatment for sps and i wonder given how similar we are then this may help you.

yes the more i try to do hayley, the worse my symptoms become. walking can trigger the spasms. standing makes me stiff and also if i sit in the same position for to long. i can no longer lay flat on my back with my legs straight, seem to have to keep my knees bent.the list could go on and on. in my case i struggle really badly with server fatigue, muscular weekness and all over muscular and joint pain. it is these symptoms that i fight with each day and seem to contibute to the occurance of my spasms. i also have very sore sensitive skin and therefore spend most of my time in my pjs.

i started hydroxy just over a week ago so i am hoping for a little relieve in the next few months with the joint pain.

the cold weather is affecting me too. even if i was well enough to go outside, i cant because the cold causes my body to tremour all over, tighten and then spasm. so i must admit that i am looking forward to the warmer weather.

how do you cope with the faigue. mine is so bad that i havent had the strength to go out since christmas eve and i am almost always in bed as it is to difficult for me to sit up. do you suffer like this too?

would be lovely to stay in touch hayley, please inbox me anytime. it really helps to talk to someone like me

sending love and smiles

nerri

[MadValley in reply to nerri]

This could have been written by me today. So crazy how similar we feel.

My muscles have been causing issues for a while, they started getting worse and worse, mainly in my neck, shoulders and back, when it started to work around to my chest I went to the ER. They gave me Valium and hydrocodone and sent me home. Less than 24 hours later I was back, so scared because my muscle pain had never been so intense, and in my middle to lower back and wrapping around to my chest. They checked to see if I was having a heart attack and I was ok there, but first they gave me an iv with a dose of Ativan. INSTANTLY the pain just washed away. I yelled OH MY WHAT WAS THAT??? The nurse told me, and it was honestly the only medicine to date that ever worked on my muscles and muscle pain issue. I have literally tried every anti inflammatory and muscle relaxer, several pain meds, but EVERY muscle relaxer and none of them had any effect on me.

That was almost 2 years ago. Now I take 6mg of Ativan a day which freaks 99% of doctors out, but high doses of benzodiazepines are the current treatment for SPS. I have not officially been diagnosed with sps, but I'm needing to get an appt with a neuromuscular specialist to get that taken care of. For now, my Ativan has those symptoms under control about 95% of the time!

I also have lupus and fibromyalgia. Started shortly after I had my 2nd child.

I can say I want my life back. The fatigue keeps me in bed most of the time, my skin is so sensitive I stay in Jammie's or soft sweats all the time.

I use to work full time AND have time for my kids and outings etc! What happened?? I'm only 33. I want me back.

I just started plaquenil about a week maybe 2 ago. I'm hoping it helps with the fatigue. It's my biggest competitor right now. I'm afraid to leave the house because sometimes I'm suddenly so exhausted I can't handle it. And I usually can't finish my plans, 1 stop is my limit.

Anyway, glad to see people talking about SPS here, I was starting to feel like a crazy person making it up.

[tinnymel]

yes, I was diagnosed with both. It has been quite tough