Hi again,more success in you getting my mess to you,.
Oh i know ive had a bad cold,thats what has trigered my flare i think,its the fevers,only have to do that wrong thing,and its like a waterfall down my back and head,then i get so cold it makes me feel sick,and so uncomftable,i remeber the illness coming on me 2yrs ago,i didnt get off my sofa for 3mnths,the fevers and jiont pains,then the cols sweats were unbearable,but now i know alot more how my body reacts to the things i do,but sometimes,it sneaks appon me without any warning.it is so sly!!
I hope you feel well soon,please keep warm,and soft warm hugs are sent your way xxx
kathy said:
Hi Tez,i did try to reply to this advice last week but it wouldnt accept my mess,thank you i will be asking alot of questions week after next,i most defonatly have some thing going on,and ive every thing written down,thanks again you are a great help,and do apprecaite and listen to every thing you say. warm hugs Kathy xxx Tez_20 said:
Hello Kathy.
It is wise to take your partner because my husband speaks up besides myself and how yours is the 16th i see mine on the 30th.lol
I've read things you've put and i'd say especially sjogren's and you do need to know as it's as bad as Lupus it's another A1 Disease and if your rheumo says yes...ask if you have primary or secondary, be persistant mate to know what's going on.
Kathy did you join the sjogrens site which is seperate to LWL as i can't remember because you'd know by the discussions if you have similar symptoms.
Yes i got your messages but i've done some in the past and totally lost them and you never say again what you said in the first place.lol
Yes the cold will trigger a flare and your symptoms and a cold takes our immune system rock bottom and it takes some time just trying to get right...anyone who is bad keep a right distance from regarding anything always thing of your immune system and picking things up quick.
I suffer the fevers around evening time and they're unbareable it's like someone but you on high roost then stuck you out in the snow...issues like this make my temper rise so i sit there and try my hardest to bare with it, it's like someone in the menopause.
Learning your body how your doing is the best thing i've been doing it for 5yrs now because i have so many complications with A1 Diseases overlapping autoimmune diseases at first i felt like i was losing the plot besides flares like yourself and i've learnt what comes from what and when im having a single flare or a combined one.
Oh bless you kathy you do the same mate, as the weather in general does'nt help we one bit.
Hugs Terri xxx
kathy said:
Hi again,more success in you getting my mess to you,.
Oh i know ive had a bad cold,thats what has trigered my flare i think,its the fevers,only have to do that wrong thing,and its like a waterfall down my back and head,then i get so cold it makes me feel sick,and so uncomftable,i remeber the illness coming on me 2yrs ago,i didnt get off my sofa for 3mnths,the fevers and jiont pains,then the cols sweats were unbearable,but now i know alot more how my body reacts to the things i do,but sometimes,it sneaks appon me without any warning.it is so sly!!
I hope you feel well soon,please keep warm,and soft warm hugs are sent your way xxx
kathy said:
Hi Tez,i did try to reply to this advice last week but it wouldnt accept my mess,thank you i will be asking alot of questions week after next,i most defonatly have some thing going on,and ive every thing written down,thanks again you are a great help,and do apprecaite and listen to every thing you say. warm hugs Kathy xxx Tez_20 said:
Hello Kathy.
It is wise to take your partner because my husband speaks up besides myself and how yours is the 16th i see mine on the 30th.lol
I've read things you've put and i'd say especially sjogren's and you do need to know as it's as bad as Lupus it's another A1 Disease and if your rheumo says yes...ask if you have primary or secondary, be persistant mate to know what's going on.
Kathy did you join the sjogrens site which is seperate to LWL as i can't remember because you'd know by the discussions if you have similar symptoms.
Thanks for your reply,im up till late as usaul,and on here looking at the discussions etc,i did have a look at sjens sydrome,and yes it does sound like me,thenks for the advice.x
I have my fevers all day up to 10 or more,they are awful,im in on now thats why i have to wait before i can go to bed.Might as well buy a water bed lmho,and a wetsuit,with all these fevers lol.
Suppose we have to laugh at it sometimes,or else we would go daft.
Im seeing a pscaitrist doc next week too,as this as progressed my depression has as well,ugh,so im hoping they will sort my anti depressant out as my doc wont percribe til ive seen this doc,im on 150g of amatrypciline,and my regular gp says it is not advisable to take me off them unless it is done slowley,so will have to see what happens.Hope you sleep well.
Hugs Kathy xxx
Tez_20 said:
Hello Kathy,
Yes i got your messages but i've done some in the past and totally lost them and you never say again what you said in the first place.lol
Yes the cold will trigger a flare and your symptoms and a cold takes our immune system rock bottom and it takes some time just trying to get right...anyone who is bad keep a right distance from regarding anything always thing of your immune system and picking things up quick.
I suffer the fevers around evening time and they're unbareable it's like someone but you on high roost then stuck you out in the snow...issues like this make my temper rise so i sit there and try my hardest to bare with it, it's like someone in the menopause.
Learning your body how your doing is the best thing i've been doing it for 5yrs now because i have so many complications with A1 Diseases overlapping autoimmune diseases at first i felt like i was losing the plot besides flares like yourself and i've learnt what comes from what and when im having a single flare or a combined one.
Oh bless you kathy you do the same mate, as the weather in general does'nt help we one bit.
Hugs Terri xxx
kathy said:
Hi again,more success in you getting my mess to you,.
Oh i know ive had a bad cold,thats what has trigered my flare i think,its the fevers,only have to do that wrong thing,and its like a waterfall down my back and head,then i get so cold it makes me feel sick,and so uncomftable,i remeber the illness coming on me 2yrs ago,i didnt get off my sofa for 3mnths,the fevers and jiont pains,then the cols sweats were unbearable,but now i know alot more how my body reacts to the things i do,but sometimes,it sneaks appon me without any warning.it is so sly!!
I hope you feel well soon,please keep warm,and soft warm hugs are sent your way xxx
kathy said:
Hi Tez,i did try to reply to this advice last week but it wouldnt accept my mess,thank you i will be asking alot of questions week after next,i most defonatly have some thing going on,and ive every thing written down,thanks again you are a great help,and do apprecaite and listen to every thing you say. warm hugs Kathy xxx Tez_20 said:
Hello Kathy.
It is wise to take your partner because my husband speaks up besides myself and how yours is the 16th i see mine on the 30th.lol
I've read things you've put and i'd say especially sjogren's and you do need to know as it's as bad as Lupus it's another A1 Disease and if your rheumo says yes...ask if you have primary or secondary, be persistant mate to know what's going on.
Kathy did you join the sjogrens site which is seperate to LWL as i can't remember because you'd know by the discussions if you have similar symptoms.
Naughty Naughty mate up late...mind you join the club...you made me laugh about the waterbed, mind you i do find the sweats annoying ontop of the lot.
What sjogren's did you look at was it the new site Ben's started as the info on their is great besides the discussion's but if it sounds like what you have...sort it out with your rheumo mate.
We would go daft if we let the lot take we over mentally and i hope seeing a new psychiatrist works out well...i've stopped seeing mine and a letter as been sent to my GP months back stating, now listen to this "I'M OF SOUND PEACE OF MIND"...for christ sake anyone would think i'm a raving lunatic but they still send me an emergency card for 24hrs during the day, don't it make you laugh plus i take valium.
Yes i'd keep on your med till you see this new doctor and lupus can cause our depression to be worse besides kicking in unaware when your not expecting it, trouble is Kathy Lupus thrieves of it besides and makes our symptoms worse.
Take it steady mate and i hope when you are able to rest, you get a goods night sleep.
Hi Tez,glad you had a laugh lol.yes you do have to sometimes,hey at least you have it on paper that you are sane lol.
Yes its Bens site that i looked at its very interesting,i was more aware of syptoms,that i ignored were in fact part of the illness,i think we do that dont we just grin and bare it.
I see my pain doc first on the 13th,he gave me the sreriod injection in Feb,it was the most painful procdure ive had i was crying it was that bad,and it only lasted just over two weeks,never again,it brought on a bad flare as well,so i wont be having that,i had spine surgery in 2002 and its left nerve damage and pain,with the scar tissue,think i need shaking up,i hate it because i have to use a elecric wheelchair when i go out,blumming hate it.
Hope you are well Tez,and i send you my very best,and hugs sent your way x
Tez_20 said:
Hello Kathy,
Naughty Naughty mate up late...mind you join the club...you made me laugh about the waterbed, mind you i do find the sweats annoying ontop of the lot.
What sjogren's did you look at was it the new site Ben's started as the info on their is great besides the discussion's but if it sounds like what you have...sort it out with your rheumo mate.
We would go daft if we let the lot take we over mentally and i hope seeing a new psychiatrist works out well...i've stopped seeing mine and a letter as been sent to my GP months back stating, now listen to this "I'M OF SOUND PEACE OF MIND"...for christ sake anyone would think i'm a raving lunatic but they still send me an emergency card for 24hrs during the day, don't it make you laugh plus i take valium.
Yes i'd keep on your med till you see this new doctor and lupus can cause our depression to be worse besides kicking in unaware when your not expecting it, trouble is Kathy Lupus thrieves of it besides and makes our symptoms worse.
Take it steady mate and i hope when you are able to rest, you get a goods night sleep.
It is a good job i can laugh about it, the idiots how they've treated me over the years and my temporal-lobe epilepsy and manic depression is now classed as SANE...i deserve a medal.
Well as long as you know what you maybe facing by looking at the sjogren's group...when you need it it's always there for you.
Well i hope your appointment goes well mate on the 13th and please let me know how it goes.
It's alright have these injections but sometimes they can cause more trouble than they're worth and i am sorry about the operation causing more trouble especially nerve damage as that does cause some issues.
Well your not on your own where electric chairs are concerned...everyday i depend on either arm crutches, a rollator or a wheelchair to how bad my legs are when i wake and if i can walk it's a bonuis if paralization as'nt happened while sleeping, ste as the car to take me out but if i ever venture in the summer over the canal with him and bruno it's my electric scooter...i've had funny looks but don't bother...i did have one tht went 4mph to slow, sold that and brought an 8mph and i attach bruno lead to the handle and stick it on high speed and away he goes
I've not been on it this year with how the weather as been.
(Ben needs to start an old aged pensioners site for us) LOL
Kathy try you hardest and enjoy what's around you mate because we only have it once.
Love you to bits mate. Hugs Terri xxx
kathy said:
Hi Tez,glad you had a laugh lol.yes you do have to sometimes,hey at least you have it on paper that you are sane lol.
Yes its Bens site that i looked at its very interesting,i was more aware of syptoms,that i ignored were in fact part of the illness,i think we do that dont we just grin and bare it.
I see my pain doc first on the 13th,he gave me the sreriod injection in Feb,it was the most painful procdure ive had i was crying it was that bad,and it only lasted just over two weeks,never again,it brought on a bad flare as well,so i wont be having that,i had spine surgery in 2002 and its left nerve damage and pain,with the scar tissue,think i need shaking up,i hate it because i have to use a elecric wheelchair when i go out,blumming hate it.
Hope you are well Tez,and i send you my very best,and hugs sent your way x
Tez_20 said:
Hello Kathy,
Naughty Naughty mate up late...mind you join the club...you made me laugh about the waterbed, mind you i do find the sweats annoying ontop of the lot.
What sjogren's did you look at was it the new site Ben's started as the info on their is great besides the discussion's but if it sounds like what you have...sort it out with your rheumo mate.
We would go daft if we let the lot take we over mentally and i hope seeing a new psychiatrist works out well...i've stopped seeing mine and a letter as been sent to my GP months back stating, now listen to this "I'M OF SOUND PEACE OF MIND"...for christ sake anyone would think i'm a raving lunatic but they still send me an emergency card for 24hrs during the day, don't it make you laugh plus i take valium.
Yes i'd keep on your med till you see this new doctor and lupus can cause our depression to be worse besides kicking in unaware when your not expecting it, trouble is Kathy Lupus thrieves of it besides and makes our symptoms worse.
Take it steady mate and i hope when you are able to rest, you get a goods night sleep.
You make me laugh Tez,and i to feel like they are taking the p...,ive work from being 15 and have 30yrs nh moneys and it makes me mad especailly when you have waited so many mnths for an app,and then you come out thinking what the hell!!im not prepared to accept that any more.
You know you are right,i after 2 what ever days came out of there feeling so poorly and i will never go through that again.
i have two whhelchairs one im supposed to use indoors but i wont,i try to exercise every day,ive one of those machines you put your feet on and they are supposed to help with circulation,and the machine that you do,like you are on a bike the first triggers the nerve damage and the later hurts my back,i have weights as well for my arms but the fibro kicks in.
Oh that sounds fun with the dog lol,we have a chihauhau,so he doesnt need to much exercise lol,but hes the dog from HELL!! lol,he bit me last night,didnt break the skin,but it has left a bruise,little bugger,i love him but i wont have him on my knee any more.
You certainly do deseve a medal with not just me,let you know probs etc,thankyou so much you
are a tonic.Love you too,you are like a breeze of fresh air,and you are suffering too so much ,love Kathy xxx
We need a laugh mate or we mays well drop dead...Kathy you know as much as me that working class people don't count no more in this country it's all for the uppe class and they don't care how many years people have worked as daily news shows the lot mate with the goverment it makes me savage but regarding appointments don't let them mess you about be up front because i am i won't stand for the nonsense.
How you feeling today though after 2 days of pure pain?...because some things you can be worse off with like i said and sometimes issues are well left alone.
Well how you have 2 wheelchairs they will only allow me one and it's take my pick one for outdoors or one for in, so i always pick the one for indoors and have them do the wheels solid so i can use it outside besides.
Well out your using the weights etc...they do reckon that swimming is the best but i'm like you it's impossible nd i told my first rheumo this, as he wanted me to try and strengthen the muscle wastage i have...how can i go swimming with epilepsy when i was banned from alot of swimming pools through my seizures...the brains in some specialists makes you wonder how they did finally get their jobs but you do need to take issues really steady with what you've gone through besides kicking pin and aching off quickly.
Well put it like this it wares bruno out when i do, do it because staffs can never get enough exercise being powerful dogs, i'm only 4st heavier than him .LOL
Chihauhau's can be a nasty breed of dog and it was proved lastnight when he had you, bruno if he catches you as gone through my skin is fangs are massive but i have a tetness injectionevery 10yrs for my seizures so i never bother if he catches my skin and i bleed it just takes longer to heal now....you made me laugh mate calling him a little bugger, my you the smaller dogs are sometimes nastier than the larger ones.
Oh bless you kathy...i try my hardest sometimes to make some members laugh as it breaks just a few minutes of the down side of the illnesses.
You takecare mate and get some good rest. Love Terri xxx
Lupus can affect your sinuses too?!! No wonder I've been so miserable this year. I feel like I've been carrying a brick on my face for months now.
kathy said:
I have terrible headaches,migraine,especailly if i go in the sun,or if a building has flueresant lighting.
When i have a flare,my sinuses go into overdrive,and this can trigger a .
I go into a quite room,have cold packs and try to rest,some times they knock me sick,and i have the waterfall lights streaming down,usually my right eye.
I hope you can find a solution to your headaches,but they are just the norm for me.
It can affect your sinuses bad besides causing TMJ disease which is all linked with your sinuses...i don't think there's one single issue it does'nt affect.
ugh, and I grind my teeth horribly, my boyfriend said it sounded like frogs were in the bedroom last night.
Tez_20 said:
Hello Kira,
It can affect your sinuses bad besides causing TMJ disease which is all linked with your sinuses...i don't think there's one single issue it does'nt affect.
That's TMJ Disease that's developed if your grinding your teeth and i'd ask about seeing ENT...we have a TMJ diease group on the main page if you'd like to join it and look at more issue...i have to wear a splinted gum sheild at night to stop grinding my teeth and it being splinted stops it moving completley for when a seizure occurs so i don't choke. :)
Kira said:
ugh, and I grind my teeth horribly, my boyfriend said it sounded like frogs were in the bedroom last night.
Tez_20 said:
Hello Kira,
It can affect your sinuses bad besides causing TMJ disease which is all linked with your sinuses...i don't think there's one single issue it does'nt affect.
That's TMJ Disease that's developed if your grinding your teeth and i'd ask about seeing ENT...we have a TMJ diease group on the main page if you'd like to join it and look at more issue...i have to wear a splinted gum sheild at night to stop grinding my teeth and it being splinted stops it moving completley for when a seizure occurs so i don't choke. :)
Kira said:
ugh, and I grind my teeth horribly, my boyfriend said it sounded like frogs were in the bedroom last night.
Tez_20 said:
Hello Kira,
It can affect your sinuses bad besides causing TMJ disease which is all linked with your sinuses...i don't think there's one single issue it does'nt affect.
Im having an awful one-sided headache that pain killers only dull. Starts behind my eye to behind my ear then down my neck to a spot in the clavicle area. Found out I have a right ear infection that wont go away. On 3rd dose of antibiotics and now methylprednisolone. All of this is happening yet my WBC is normal!!!
Ear infection's alone can be very painful but please be careful how many lots of antibiotic's your having because these alone lower out immune system eve more...people without any disease should only have 2 lots in a years so it's best for we if it's even less and that's good your WBC being normal, unless the lupus is causing a false reading which happens.
After a visit to the ENT, ear infection is clear, but neck and ear are still hurting. After running tests, the ENT claimed it may be a bad muscle spasm and prescribed me skelaxin (muscle relaxer) and naproxen. I dont think i need it... called my rhuemie and she said its a good idea. Im really frustrated now b/c my rhuemie said my ear was infected the day before I went to ENT. I feel like im being passed around and placated with no real solution! Just me medication! Anyone else having Right-sided headache that stems from base of head and wraps up to back of eye? And down neck?
I'm sorry to hear how ENT have said one thing and your rheumo is saying the other.
Now i get the symptoms you have but mainly connected to the left side and when it hits the eye it can become painful...do you have any form of Arthritis as these issues can cause this i do have osteoarthritis and it can cause some pain from the neck into the head but me having sjogren's ontop plus having eye trouble with my left at the moment...the two combined really hurt.
They could be. There are such things as “lupus headaches” I read about them on the lupus foundation website under how lupus effects the body. I too suddenly started with headaches. I would still ask doc though. Good luck!!
Im in the same boat,have a lump on side of ear,doc said it was trigger points,then had to go and see the nurse as the pain was pretty bad,she said she could see something white,thought it was an infection,and put me on antibiotics,its still sore,and the other is starting now,i get the striking head pain and behind my eye down to my neck,it drives you nuts.its been put down as trigger points,Myfacial pain,have a look on the net,it will tell you all about it,best wishes and {{{O}}} hugs.x
kris said:
After a visit to the ENT, ear infection is clear, but neck and ear are still hurting. After running tests, the ENT claimed it may be a bad muscle spasm and prescribed me skelaxin (muscle relaxer) and naproxen. I dont think i need it... called my rhuemie and she said its a good idea. Im really frustrated now b/c my rhuemie said my ear was infected the day before I went to ENT. I feel like im being passed around and placated with no real solution! Just me medication! Anyone else having Right-sided headache that stems from base of head and wraps up to back of eye? And down neck?
