i wanted to ask if anyone else has experienced this. Back in the day when I was first diagnoised and the disease was not under control I had experiences where almost suddenly I started to shake, drip with sweat and become so fatigued/exausted that I felt like I would fall unless I dot to sit down.
This has happened to me five times. I can remember all of the incidents very clearly. The first was in Sainsbury's. I was sweating and trying to make my way to customer service and in fear that I wouldn't make it in time. When I did get there I wasn't making a lot od sense and I was shaking. Lucky for me a woman standing beside me noticed me and just took over. She ordered a worker to get a chair immediatly.
Turned out she was a nurse and she said she knew by the colour of me that something was very wrong. I was so glad of her. After sitting and a glass of water I was able to make it to the car and home. It happened to me in Lidle, Jolley's Pet shop, Asda and most recently in Iceland.
The episode in Iceland happened just last Wednesday. My disease is once again un controled. I was standing inthe queue and felt like my body was boiling, I was shaking and felt again like I could no longer keep my body upright. Once again a very kind woman came to my rescure. She said it was the colour I turned and the sweat dripping from my hair. She took my money, paid for my goods and walked me to my car, which was just outside the shop, luckly.
I'm very lucky that everytime its happened I have had someone with me or a kind stranger came to help me. I can't imagine how anyone would be able to get me off the floor if I had collapsed......
Has this happened to anyone else? Now remember it only happens when my disease is NOT under control......its very frightening and has frightened me from going out in public for fear of another occurance.
Hope everyone is well.
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Jeanabelle60
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The foto is of the late great Boss Martin......my beloved and much missed companion for nearly 13 years......or as my son called him the 'one eyed monster'......wasn't he gorgeous?Another rescued beauty who gave as much love as he got.
Hi--- I have had the same feelings on several occasions-- esp the "" boiling and shaking""" --- I always put it down to being dehydrated and try to remember to make sure I am topped up with water. It's a horrid feeling .
Thanks Jacki, I do normally drink a great deal of water while at home. I never thought of dehydration. I always put it down to the amount of inflammation in my body as I have pain in almost every joint and tendent from my head/neck/jaw to the tips of my toes. You could very defiantly be right, thanks for that. I'll make sure I have water with me in future.
Me too think the fact of not enough water is true. I have increased my water intake and it has controlled the dripping hair and fatigue.
I have rd and fibro but have had that happen to my before rd I was told that I had a panic attack . I always carry water with me as I can get tiered and get a dry mouth ,don't let it put you off going out once i understood what is happening I now can take back some control.no one ever died from a panic attack that worked for me
Thanks Junebee. I have had panic attacks before but not thislong time. The only difference between them is that with a panic attack I was usually physically sick, with these 'attacks' I don't. The only thing that makes me think it is linked to 'uncontroled' RD as that that is the only times it has happened to me.
However almost all you yu who have replied have all mentioned water and/or dehydration so there could possibly be a link there. I certainly will in future not go near a shop with a bottle of water.
Everytime i go into Jolley's Pet Shop the girl behind the counter always asks me how I'm doing, bless.
I was also advised to carry worry beads or carry a small pebble in my pocket and when I felt an attack coming on place them in my hand and turn them over it takes your mind of the attack some people place a rubber band on there wrist and pull it until it passes if it proceeds you know it was not a panic attack .thing that overwhelm you can be very upsetting I hope you get sorted soon
I've had that sort of feeling when vacuuming but only relatively recently. I've only been able to do one room at time & then rest, gather myself together have a drink of water then tackle the next room. I go ultra hot, sweat & start shaking, my legs as like jelly when this happens. I'd put mine down to getting too hot due to the effort & my transdermal patch releasing a dose. It's not pleasant but I haven't had it whilst out, that must have been worrying for you Jean. x
Just love your pic! How could your son call such a cutie a one eyed monster?
I know.....look at that wee face. I just loved my wee Boss so much. He was so protective of me....wouldn't let anyone near me if I had him up in my arms. When he died I had a wake for him. I lay him out on my bed on top of big fur throw. Some of my neighbours called, some bought me flowers. Everyone in the street knew how much he meant to me. It was lovely, he had a great send off. He is buried out in the garden, I'm looking out at his wee grave as I'm writing this reply.
I understand what your sayong about vacuuming one room at a time.....thats the only way I can do any kind of cleaning anymore.....do a bit, sit a bit, do a bit etc, etc.....
Yes I have this. My disease has not been controlled for nearly 3 years now and this happens to me frequently. I have to sit down and wait a while until i think I can go on.
Yes thats me. Once I can sit for a minute and a drink of water I can go again but it means going home and not on to more shopping or whatever I was doing.....it really takes it out of me, I be wrecked for ages after.
How have you managed for so long with your disease uncontrolled? Are you on any medication?
I am usually at work so I have to keep going. I crash and burn big time every weekend I can tell you. I have and am struggling it has been very very hard. But I feel if I give in I will never get out of bed again. I have been on hydroxy for 14 months but I am not sure it has done anything, tramadol 100mg slow release once a day and pred 5mg, I have just started imuran so not sure yet if I will tolerate it. I have multiple chemical allergies and have tried mtx and arava previously.
My heart goes out to anyone with this disease who, is young, has small children, works, looks after another dependant.....it really does I just don't know how you manage. I understand completely why you would collapse at the week-ends, your poor body is worn out from Mon to Fri. I be glad of the Tramadol, 100 twice a day. It takes the edge off and allows me to function fairly normally while it wait for the next Bio that I could tolerate to come along. What is Imuran? I haven't heard of it before.
I can see where you might think that, I did myself a few times. But my menopause has passed me a good while now so its not that. Having read all the replies I think dehydration may certianly be a contributing factor I am of the personal belief that it is linked to uncontroled RD. I only have these attacks at those times. I'm seeing my darlin Consultant on 12 Feb.....poor man I have a load of ?'s for him. I'll let you know how I get on. XXX
I get this if I have an allergic reaction. Put down to panic when it wasn't and now proved it wasn't. I have a friend who also gets it from food intolerances.
beauty there seems to be a lot of this sort of thing happening and with just as many reasons or theories as to why they happen. Personally I think it is a result of something 'internal'. The feeling of my body almost suddenly 'boiling' , my heart racing, sweat dripping from my hair (I'm a woman who really never 'sweats', never have), the feeling that my body was getting closer and closer to the ground and I'm helpless to do anything about it and uncontrolable shaking. These sympthoms could have many causes as the replies on her would suggest...... I think this discussion will come up again.....thanks for the reply.
I would jot all the symptoms down Jean, add them to your list for your lovely Dr Armstrong, then you don't forget any of them whilst there, see if he can throw any light on what may be causing them. x
I will indeed, poor man! I love him to bits and he and I usually have a good laugh too at some time during the consultation. I'll let you all know how I get on. X
I have had a few occasions when I have come over very faint and have been lucky enough to find a chair just in time. It mainly occurs in crowded surroundings. Once was an exhibition in Birmingham, another an art gallery although there have been other times. I also find drinking water is the answer so I carry a bottle in my bag. My consultant said it could be because I take steroids which has stopped my body from producing its own. Apparently in times of stress most people will produce enough chemicals of their own to compensate but I don't. When I had some dental implants the dentist would not commence the work until I had taken 13mg of pred. I usually take around 4mg.
See now that is a new addition, steroids! I'm not on them so in my case they wouldn't be considered but it might be beneficial to some others so thanks for your reply. I'm only on paracetamol for inflammation and Tramadol for pain.....but I can see where meds could well be influential. Thanks and hope you are well luv. X
Poor you jean a belle
Those episodes sound very scarey. Are you between meals?
Only time I ever shake and sweat is when my blood sugar is low? I've stopped eating sugar and I don't get those attacks anymore . I think you should go see your gp and get yourself checked out. Perhaps the inflammation is affecting something maybe your heart? Your wee doggie was so gorgeous wasn't he, you must miss him terribly! Our cat Tess has been poorly recently and when the vet told me they had to keep her in I cried. I felt silly and the vet was very kind and comforted me. We visited her the next day and she looked so sad in a cage with a drip in her paw. I picked her up and she was shaking terribly then stopped and started purring she was so pleased to see us. Me and my husband had tears in our eyes. Go get yourself checked out sweetie.
Kiki, make no apologies for yyour strong feeling towards your companions. When wee Boss was being PTS I was a mess. I had to settle myself down for the sake of him as he was watching me falling apart. I went over to him and gathered him up as best i could and stoked and talked to him until it was all over. I now have my two rescued who are a week's work and like having ten weans (this is what we call children here in Derry) in the house but they keep me going and are the only reason why I get up in the morning sometimes.
I am to see my GP in a fortnights time and will be having a good chat with him. Thanks for your reply Kiki, I love hearing from you. XX
Oh bless you thank you for your kind words. They come just at the right time. Derry eh? Would love to visit NI sometime, I have a cousin in Ballyhalbert on the coast. She is English and went to study in Belfast and met her hubbie and never went back to England.
Our cat is a rescue one. She was so frightened when we got her she must have been badly treated and now she's settled and gets lots of love.
Hope you don't have any more of these episodes, aren't people kind when you need help?
I have to say, for all the difficulties that this place has seen the people are thee most helpful, considerate and big hearted. At every juncture I have had people come to my aid. That hand at your elbow can be the most reassuring of gestures. I have been very lucky. Ireland, north or south is gorgeous, breath taking site all over the place, you would be very welcome.
One of my two rescues, Kells, was brought to me one late November night for me to foster her until she could get to the centre. The poor wee creature was shaking, and passing poo, pee pee and vomit at the once. She was in an awful state. The fella that brought her put her on the floor and left. I moved towards her and she bit me in the soft flesh between thumb and forefinger. I left her for a few minutes and came back with a foot stool to sit on in front of her and just gradually over about an hour talk her around to coming to me.........that was two years ago and she has been attached to my right hip ever since!!
I'm sure they love you too Jean. You're a kindly lady & they will sense that. Kell's reaction was a natural one, she was vulnerable, very poorly & goodness only knows how she was treated before (I say she, we have girls, she may be a he!!). The companionship an animal gives can't be underestimated, neither can the unconditional love. Two of our three were rescues. Although they do have history, their own issues we'll never be able to mend we can make their lives so much better than they'd previously known. You're their life too remember.
You're right, the hand at your elbow, the kindness of strangers just when we need them, so well put. x
Your so right about rescue animals having a history......some of them not all. It took me a while to 'settle' my two latest rescues but in time and with love and patience we all got to the desired place. My Boss realised from day one that he had landed in doggy heaven......not a day's bother with him. Many of my 'foster babies' were the same. They sensed that they were in a safe and loving enviorment and they showed how much that meant to them. The foto here is of my Barney, he was a runner......but it turned out that he wasn't running away from me. In time I learned that it was things like strong wind, heavy noisey rain, thunder and the likes that was terrifying the poor wee man. Once I figured it out we had no problems after wards. XX
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