Hi All this Blog was started by Suzypaws but has made its way in the back but a number of you found it useful so i have posted the orginal message from suzy and the link so you can start a new post here as well assee what people wrote before.
Here is a post I put on the 'Hughes (APS) support posts & soooo many people put their answers on it! which ended up looking like a chinese menu!!
It was interesting to see how many of us actually have a lot of the same things even though they havn't been linked to Hughes.
Hi guys, don't know if any of this has been asked before, but i just wondered which of these any body else gets or has...maybe some of you.......like you Garry wont get some of these though !!
1-frequent migraines....doc' told me they would go once taking warfarin.
2-cysts on ovaries.....I've had 20,11 on one side 9 on other.
3-right knee giving way when walking, drop things with right hand.
4-disc degenerative disorder.
5-bladder & kidney infections.
6-memory blocks things out & you can't get some things back(big stuff too)
7-breast glands painful,on & off all the time. (doesn't matter what date.)
8-moody & tearful.(doesn't matter what date.)
9-words or letters muddled up whe speaking.... eg:criminal will come out crinimal, car park will come out par cark!
10-dry mouth plus dry eyes (have trouble taking out contacts)
11-jaw cracks...big time !
12-gall bladder stones (had my gall bladder removed year before last.)
13-loss of appetite then binge eat.
14-get tired very easy, usually at an inconvenient time not bed time !
15-kidney stones...i peed blood for about 5 days then nearly passed out in pain on last day last year...they think it was a kidney stone being passed.
16-abnormal bone growth..bunion & a few bones growing strangely!
17-having an extremely good immune system as a child(eg.never had colds/chicken pox) then it just completly went and got everything out there.(maybe brought on by the stress of when my dad died?)
18-heart missing a beat(told it was quite common though.)
19-now have dust allergies, allergic to some fish, hay fever etc.
20-dizzy spells or labrynthitis, Menieres disease.
21-Raynaud's disease.
it would be interesting to know if theres a few of you that have most of these symptoms,you could just write the no's. down of the 1's you get, it'll probably look like a chinese meal being ordered but it would be quicker !!
think of it as a type of questionaire thanks for your time xx
Some info' on various things to do with Hughes disorder are explained on my blog/website, feel free to take a look at them on there if it helps, things like Fibromyalgia, Meniere's disease, the plaquinil drug and Hughes itself, hope this helps
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Lets see: 2,4(maybe,) 7 (went away on gluten-free diet,) 14,16,17 (also did not bleed much when cut. I thought that people who bled a lot were 'wimps,') 18 (a lot! A fib.)
Thank you Paddy for re posting this , hope you all find it useful or interesting! just remember some may just be coincidental & not necessarily mean you too will get them.....hugs to you all xx
My daughter and I read this with much laughter as she asked were you all having a comp to see who has the greatest number of symtoms LOL.
on a more serious note, we are looking forward to her appt. with Dr Godfrey next month and are preparing the documents and other things we reckon he might need.
Ok a couple of people emailed and asked if we could join the two blogs together from the orginal and this one so i have copied it so sorry its long but it covers all the old posts
Paddy
teresahunter 7 Sep 2011Edit | Delete
yes 8, 11,19and 20 all yes..19 drug allergies, i never used to be allergic to anything! now most drugs seem to up set me! I had a stroke 18 months ago so nots sure which are due to APS and which are due to stroke I keep telling drs them about dizziness and lightheadedness but they never give answers or suggestions what to do .
Suzypawz 7 Sep 2011Edit | Delete
keep pestering them, it may be virtigo, Labrynthitis or Menieres, It might not be but it's better if you ask just in case?
Thank you for joining in
emmaj 17 Sep 2011Edit | Delete
same here - its debilitating x
ClareSteggles 7 Sep 2011Edit | Delete
1,6,8,13 are yes all the way however i would like to say 3 applies but i am stroke survivour so it maybe the lasting effects but i do drop things alot. I do also have very cold hands and feet but this tends to be when it windy outside or i ve been in the shower/ bath.
Other then that i am just myself
Suzypawz 8 Sep 2011Edit | Delete
You keep being yourself
Take care x
jessielou Admin 7 Sep 2011Edit | Delete
Hi suzy
Yes here`s my list
1, 2 had two cysts 15 years ago when undergoing fertility treatment.
3,4,Degenerative disc disease, lumbar, thorassic and cervical spine
5,6,7 investigated for painful breast lumps about 7 years ago (discovered fibrous cysts in breast),
8,9,10,11 I have TMJD (problems with joint in jaw)
12, admitted last year suspected gall stones,
13, hiatus hernia and acid reflux so struggle to eat.
14, 16, bunions,
18, chest pains, severe asthma,
19, allergic to hay, straw, grass pollen, mould, guinnea pigs, cats, dust, some medications, latex. awaiting allergy testing.
20, dizzy spells, fainting, balance problems, better when INR is higher end of range.
21, gp thinks I have Raynauds.
Some extras!!
skin rashes,
photo sensitive,
pains in joints everywhere,
muscle cramps,
numbness and swelling in hands and feet,
stiffness in mornings, takes ages to get moving.
Earache and problems with hearing, feel like they are clogged up or like I`m underwater.
Don`t think that these symptoms are all due to Hughes, cos I also have diagnosis of fibromyalgia and lupus symptoms overlap. Very confusing.
Don`t have all these symptoms all the time, they come and go!!! Thank goodness!!!
Sorry Suzy you asked.!!!!!!!
Hope all had a good day today,
Take care Gentle hugs Jessielou xxxxx
Suzypawz 8 Sep 2011Edit | Delete
oooooooooo........ I did did'nt I ?!!
Hugs hun xx
paddyandlin Admin 8 Sep 2011Edit | Delete
Hmmm so many to choose from ill have a 99 a 48 and a 21 !!! lol
Seriously i have:-
1,
3 But my lets do not work any more since stroke and right hand is a nightmare will work then it won't
6
8-moody and can be very snappy.
9-words all the time now when i was in remission it was not so bad.
10-dry mouth i do some times
11-not jaw but joints will crack
13-loss of appetite then binge eat i think this is just a new diet i might sell lol
14-get tired yep am a walking zombie most times especially if i have been stubborn and ignored the tiredness it just gets worse
17-having an extremely good immune system as a child(eg.never had colds/chicken pox) then it just completly went and got everything out there, yep this is really annoying found that when i was super immune would be strange illness i would have rather than normal colds etc
20-dizzy spellsyes the other things not sure what they are so ill pass at this point
21-Raynaud's disease. yep my feet and hands can go a lovley shades of purple and blue
22 - skin rashes no skin heating up and looking like sun burn yes
24- pains in joints everywhere,
25 - some times muscle cramps,
26- numbness and swelling in hands and feet, oh yes really annoying
27- stiffness in mornings, takes ages to get moving. have to have help now.
28- Earache and problems with hearing, feel like they are clogged up or like I`m underwater. Yes recently anyone know what causes this ?
Well after doing this all i can say is i am happy i am a healthy fit person i may go swim to france lol nope on second thought am going to lie down lol
Really good idea this some of these things i have but did not think of them relating to the aps will need to bring this up at next appointment.
paddy
Suzypawz 8 Sep 2011Edit | Delete
Lol.....you made me laugh Paddy!!
I just did 1hr & 15mins in my gym ( 1/2 hr on rowing machine, 20 mins on cross trainer, the rest on various machines, sit ups & twists! ) then went for a 1hr 'Zumba' class!!!!!! sometimes I wonder how/why I do it....but I'm think it's I'm scared if I stop....'it' will get me?!
It is facinating how a lot of us get a lot of the same......is it just coincidence?
Thanks for taking part
Suzypawz 8 Sep 2011Edit | Delete
Oh...labrynthitis & Menieres disease are inner ear infections & they can cause:
* vertigo - this means you may feel giddy, as if you, or things around you are moving, even when you're standing still - the sensation of movement may be spinning (rotary), in a line, or a mixture; you may also be sick or feel sick
* tinnitus - this is the sensation of hearing noise in your ears, such as ringing or buzzing - when the sound doesn't actually exist
* hearing loss
* a feeling of fullness (pressure) in the ear
Hope this helps anyone not sure too
paddyandlin Admin 10 Sep 2011Edit | Delete
Thanks Suzy you learn something new every day and you make me tired just reading what you do.
paddy
TJSTICKYBLOOD 8 Sep 2011Edit | Delete
I like this post, because although we know we clot we sometimes think the other symptoms are our imagination and they are clearly not. Here goes me....
Cyst... was hospitalised this year with one and had a large one years ago, this is what has been discovered I believe I have had plenty more
Bladder and Kidney... lots of infections and occluded a kidney which was discovered two years after it happened !!!
Memory- forget small and big things rely on my outlook calendar at work to remind me what needs doing, forget names too
Depressed and sad... being ill is enough to do this to anyone
Mixed words I call it my dot cotton syndrome and for example instead of saying fat cat I will say cat fat. This can be embarrassing at work but I style it out they probably just think Im stupid. Spelling and typing gets all mixed up even though I am a good speller
Gall bladder- had to have it out and then my bile ducts got blocked and I needed a stent the op did not go well (before i was diagnosed) consultant said my body acted very weird when operating
Fatigue... now theres a one almost 98 percent of the time, the worse is mornings sometimes I come too for a couple of hours arounf 2.00-3.00pm
Heartbeat... Ive been told I have a murmour
Raynaulds ....feet and hands turn red and blue and swell
I have also had a clot to the bowel, portal vein occlussion Tias and Clots in the arteries and veins in the legs.
Im interested if any woman with hughes started their periods late and had very irregular periods (without contraception)
Suzypawz 8 Sep 2011Edit | Delete
I started mine quite early, now sterilized, had Hughes for 10 years now, put on norethisterone to stop 'monthlys', off them now as I recently had one that lasted 6 weeks ! got to have an other ultra sound scan done to see whats going on ?
jessielou Admin 10 Sep 2011Edit | Delete
Hi Hon,
I started my periods fairly late, they were very irregular periods, doctor suggested contraceptive pill at 19 to try regulate them, had a massive reaction to it. Huge migraine, vomiting, passed out etc was extrememly ill.
Didn`t use the pill again, reacted in a similar way to fertility drugs in my 20`s, then in my 40`s had been taking norethisterone and tranexemic acid (?spelling) I had a miscarriage, then a couple of weeks later I had DVT, then Pulmonary Embolisms. It states on my notes now sensitive to hormone therapy of any sort.
I hope you are well today, Take care, gentle hugs Jessielou xxx
Julie-Anne 8 Sep 2011Edit | Delete
Oh my God Suzi, I am so glad in a way that you too have a knee that gives way-Not glad but relieved that I am not the only one, I thought it was my imagination going wild, when I go upstairs all of a sudden my left knee weakens and I grab the bannister because I think I am going to fall !! What causes it ? I would love to find out. I am going to see the consultant in London in a couple of weeks and I hope to get an answer unless anybody else knows on this site. I went out with my daughter the other day and out of the blue my knee gave way and she told me to stop messing around !!! I was so embarrassed.
Yes I am moody and have mood swings but put that down to the menopause which I have just been told I have started. My diet is awful. One day I feel so sick and lose my appetite and then I go mad and eat everything in site !! No wonder I am not losing any weight !!!
I am constantly tired and yes me too- walks around like a zombie-feel like I am a 90 year old !!! Just want to sleep and hibernate like a hamster !!
My immune system went mad many years ago and blamed it on the air conditioning where I worked-found out years later there was no air conditioning system !!
Go dizzy quite alot and feel like I will fall over-
Joint pains and muscle aches everywhere everyday full of surprises-which part of the body will hurt today-take your pick !!
Takes me a good five minutes to get going in the morning. My feet won't bend and my legs feel like they are made of wood - Pinnochio type of physic !!
I slur my words and people laugh at me-my memory is getting worse-sometimes cant remember what happened a few hours ago or where I parked the car when I am able to drive- whether I have washed some days or even taken my medication !! Scary !
Had a bunion operation few years ago but suddenly become painful and the joint is noticeably becoming worse. Hard to get shoes to fit properly.
Bowels and bladder have been affected. My stomach swells too.
My hearing has been affected and also I have to visit my dentist more often because my teeth are either cracking or breaking.
Its a mystery-
I am not moaning but can't believe how everything is changing so rapidly.
I am concerned about the knee giving way though so if anyone knows why this happens please can you let me know.
Suzypawz 8 Sep 2011Edit | Delete
Hi Julie,
Yeah, it's usually my right side that gives way, goes cold, weak, painful & a strange colour!
I got told it would improve once on warfarin.....well it's better than it was in the beginning....but not as good as they had said
I was told once that my joint pains / leg giving was / isn't down to APS.....somehow I don't believe that....oh yeah, may be down to the fact we all get it!! & I've been told wrong imformation so many times too !!!
I sometimes think it's when we lose concentration because of the pain? plus my right hand is weak too & I dont always recognise that its mine? its like theres a message not always being sent to that side of the body quick enough so that could be the same for the leg? just an idea ?!
emmaj 17 Sep 2011Edit | Delete
omg!!!!!!!!!!!!!!!!! i cant believe the breast glands,lock jaw,and cysts can all be linked ive been plagued for years - even theknee,raynauds dizziness migraines etc - amazing - am so glad i joined this site. even last year i had a breast scare i was in so much pain - thank you all so much x
Reply to this
Suzypawz 17 Sep 2011Edit | Delete
Aaaah hun, I'm so glad you are finding it good to be part of 'forums' like this one, it's nice when we can speak to others & they understand exactly what we are going through
None of these symptoms have been confirmed thought that they are linked to APS, it may be just a coincidence? it is strange how a lot of them we all have though? this 'pos't may even help 'specialists' understand APS more too!! & maybe they could be linked?
But at the moment some of these symptoms are not linked to APS.....just a 'huge' coincidence at the moment!!
Hope you are feeling ok today, take care xx
PaquitaV 5 Oct 2011Edit | Delete
I was diagnosed with APS ten years ago and have had very few symptoms since then. I do suffer from memory loss though and am beginning to jumble my words around too lately. Also have morning stiffness, despite being quite active. My doctor reckons the stiffness is due to APS. also have problems with pressure and fullness in ears. Fascinating to read other people's experiences. Thank you!
Suzypawz 5 Oct 2011Edit | Delete
glad to be of service wev'e had it the same length of time then, I'm glad you seem to be 'ok' with it & not suffer too bad, you seemm to be stabilized which is good x
SharontheSheep 14 Oct 2011Edit | Delete
Ho ho ho, you really did ask for this didn't you, and like everyone else I am thrilled (and yet feel slightly mean that I'm pleased for other's suffering) that others have the same symptoms. Here goes:
1 the bane of my life
2 have had umpteen surgeries for cysts now only 0.5 of ovary left since 1990 but constantly multifolicular!
3 knee and hand love to surprise me by giving way at the most in opportune moments, only walk with wheeled walker now as have a tendance to "throw" my right stick at people!!!
4 have osteoarthritis all over, but worst in sacroilliac joint, cervical spine, thoracic (sorry I have sort of forgotten how to spel and type at the momenbt)
6 memory appaling, have huge parts of life completely missing, totally rubbish at recaling anything spoken have to have enverything writtne down now. Word just coming outt confused and mixed upt I am reading this typing knowing that it is wrong in places but not quite knowing y.
7 brast pains, cysts, biopsys and fibromastis and sharp stabbing pains regardless of time of month
8 oh yes
9 mental confusion and word confusion well, what can i say most of thw time i try to llaugh about it but some times when you want to be taken seriously and not treated like a complete moron it's realy annoying. and other days when you are really on the ball no one believes you !
11 my jaw just doesn't fit properly anymore and my teeth don't fit together anymore. my whole face seems to have changed shape and none of it goes together properly now so I get really nauseating cracks and pain especially when I lay on my side.
13 i did think this was a side effect of my medication but then I think i have always been a bit like that
14 and it hits you from no where, it's like ....that;s it I'm tired now i have to stop and lie down now, don't get in my way I have to lie down NOW cos every fibre and cell of your body screams at you to stop
16 I do have so large bony lumps on my joints and my fingers are changing directions. I thought it was arthritis.
17 Not sure about this one as I don't seem to get any of the normal coughs and colds that go about. Anything going will always result in breathing problems and loss of voice to me.
19 From being allergic to nothing I am adding to the list daily. Thankfully not fully blown anaphalaxis but breathing problems, rashes and general flu like grotttiness, even to predniselone (!)
20 Next to the memory prob and word confusion this is my personal favourite. My last MRI hsd shown some boney grows in my inner ear which may have something to do with my inability to walk or stand straight. I regularly fall over, misjudge gaps, furniture etc.I think I have my own chair at A&E. 30 years ago I drank alot to get the same feeling I can now get for nothing just by laying in bed flat and looking up at the ceiling and watching the room spin. I tend to get the sensation of falling, when I am not falling so fall over by correcting myself.
I too have rashes, photosensitivity (I avoid going out in bright light and never without dark glasses), I have hands and feet that hurt and swell (especially in heat) and limbs that go numb and are constantly tingling with pins and needles. I have constant tinnitus, popping ears and ears that feel full of something so it feels like I am listening through syrup and all sounds are at the same volume (really difficult in busy places).
Thank god for friend, family, forums and knitting
love Sharon xxxx
Suzypawz 14 Oct 2011Edit | Delete
Bless you hun for joining in....with your VERY long list!! but you are not alone with loads of them as you now know
At least you still have a great sense of humor! it works well to keep us going doesn't it?!
I often laugh at myself when I say/do daft things...before anyone else does!!
Hope you are ok at the mo' keep smiling xx
jessielou Admin 14 Oct 2011Edit | Delete
Hi sue
still hurts inside even when we laughing on the outside, doesn't it!!!
Take care hon, gentle hugs love sheena xxxxxxx
I agree keeping positive, keep smiling
Suzypawz 14 Oct 2011Edit | Delete
Yep it does
But if they laughed before me I may feel the need to bop them on the nose!!!
Hugs back xx
PaquitaV 18 Oct 2011Edit | Delete
On the problem of blocked ears: this is something I've had for at least 25 years, since way before I was diagnosed with Hughes'. I had it checked by an ENT years ago and he claimed it was to do with hormones and couldn't be helped. I had serious doubts about this but haven't done anything about it since. However, I did discover early on that it helps to bend over and let the blood flow to my head, that seems to clear it. The ENT confirmed this and suggested cupping my hands around my neck and pressing, in order to keep the blood in there, just for a few seconds. That also helps, temporarily of course. And now it's occurred to me that it must have something to do with a lack of blood reaching the head. Weird. Have any of you tried this?
DawnS 14 Mar 2012Edit | Delete
I have had one cyst on my ovaries and abnormal pre cancer cells removed. I started my period late and it has always been extremely heavy and pretty much I need the first 3 days in bed! I also pass massive clots do any of you ladies? My knee and wrist go out on both sides but mostly the right side as well. Thats blows me away I never would have pieced this together. Pretty much I have all the same issues as all of you. I have used alot of the same phrases to discribed how I feel for instance wooden and 90yrs old.
Suzypawz 14 Mar 2012Edit | Delete
I had pre cancer cells removed too & I hear this a lot about our similarities.....I dont have the clots tho' not now I'm on warfarin anyway....I was put on norethisterone for 10 years because of heavy periods due to warfarin too until I was took off them recently...as you're not supposed to be on them with a clotting disorder!!!
hope you are ok. x
AlisonT2 4 days agoEdit | Delete
I was diagnosed with APS approximately a year ago and have many of the symptoms that I have been reading about, which for years I have put down to other things. I was just wondering if any/some/all of you have a weight problem because I am waiting for an appointment to have a gastric bypass it took a great deal of agonising as to whether this was the best course of action for me and because I have limited mobility due to joint pain I decided to go for it but if the pain is still going to be there after I have lost weight is it really worth taking the risk. I have also heard that being overweight can cause this illness is this true?
Suzypawz 4 days agoEdit | Delete
I myself havn't heard this...I'll see if one of the moderaters can re post this thread to get some feedback on some of the questions asked.
I think some of us do tend to put weight on as we cant do as much as we probably would like or did......
I would say definately not hon on the question of being overweight, I struggle to eat due to gastro problems partly caused by aps and a hernia. No one knows what triggers Aps, but the symptoms are caused by antibodies attacking various parts of our bodies and blood being to sludgy to circulate properly.. I think sometimes patients with chronic pain on long term meds do gain weight, through being less able to exercise.
I'm not knowledgeable about the gastric band surgery hon, would want very close consultation between your Aps specialist (rheumy, haematologist) and surgical team.
Unfortunately i have most of these too. On the number 16, abnormal bone growths? This past year my ankle bones "fell" and now both my feet have bones sticking out the sides. The neuro and rheum were think Charcot joint. But now im wondering if the APS is doing this. Great post by the way, thank you. Any comments on these bone deformities appreciated
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