Hi everyone i wonder if anyone else out there has mobility problems due to hughes ? some days im so tired i can hardly stay awake , sometimes im in lots of pain in the joints and i feel stiff , but the worst is when i can hardly walk to the car when i need to go to the shops im in a wheel chair going around asda , i used to be so active it is very frustrating im 46 and have 9 yr old identical twins to try and keep up with , they have indoor guinea pigs as pets and every morning they get them out for playtime and cuddles , there is alot of mess created , i have just hoovered up and tieded one room and am now in pain and so tiered . im not sure i can handle much more , it will take me a few hours to get onto the next room if at all possible , sorry to be so miserable but it`s now getting me down , thanks for listening Kim.
mobility problems: Hi everyone i wonder... - Hughes Syndrome A...
mobility problems
Hi Kimmi: The boys are old enough to begin to "do their share of the family house work". It provides them with responsibility, self-worth, and a sense of pride in their work, no matter the work. Twins are hard and you don't even have to tell me they have opposite personalities. It's always the way. But having chores really helps with leadership skills. Taking out the garbage isn't hard, but taking it out right and recycling would be very responsible.
I can't tell you how helpful aqua therapy is for each and every specific complaint you stated above. I would talk to my rheumatologist and request aquatherapy. I warn you you'll feel so good, it's very addictive. It got me out of a wheelchair and to a cane in six weeks 2 x week. Specific water exercises designed by a physiologist (sports doctor/skeletal system doctor) specifically for my case. It helps with everything including mood adjustment as they usually have some mellow music and everyone there is in the same boat, so to speak. Continual exercise is the key. I use the treadmill and do little sets of 10 exercises throughout my day to keep my back muscles streched and me moving. There is a tendancy in pain to favor the painful part and not use it. Sort of protect it. But the key to movement is movement! The more you move (which hurts at first) the more you can move ( and gets easier). If I don't exercise, say because APS got me down in bed for a few days (like today it is -2F and my joints are frozen) and I didn't do anything, exercise is the key to up, better and back on my feet. Just typing this is helping the joints in my hands.
Also, I'm not hard on myself. If I don't feel like completing a set of exercises or I just can't tolerate the thought of it, I let myself skip it until I can look at it constructively again. My body usually tells me it's time to move it or lose it. But when it happens that I don't want to do it - I don't guilt myself out over it. I figure something else needs attention more right now.
Good luck on your journey, Kimmi. I hope you feel better. Do they have the equivelent of Boy Scouts in the UK? That's a great club for 9 year old boys. Teaches them all sorts of little boy stuff.
Warm wishes,
Canary
Hi there, sorry you are feeling so terrible, I can empathize with this, my profile of various autoimmune including lupus and hughes causes the most dire fatigue and pain, and I can't tolerate Plaquenil, however have just started something new. I find that I have to pace myself and on very bad days or with virus or infection on top. It is an hour on and an hour off, sometimes it turns into half an hour on and half an hour off. However I am careful to do exercise in ten minute slots when I can and also to be very careful to eat well. Have you tried Plaquenil, or are you just starting? Let me know.. as if you have, it takes a while. Mary F x
hi canary thank you for being so inspirational you make it sound so easy but i know that it itsn`t , i take it that you live in some part of the usa by some of the things that you have said , treatment in the uk is not the same and in my experience is lacking when compareing it to other countries , im sure others will agree , the twins are girls by the way im sorry that i wasn`t clear on that , i try to get them to after school clubs and they go to brownies , i get them to do chores every day as i agree that this gives them good life experience to move on to when they become adults.The water therapy sounds devine but i have never heard of this before i will have to do some digging to find out more about that , or ask my local nurse if she knows about it , im sure if this is going on in the uk i will have to be refered.
Thank you Canary. x x Kim.
You are so welcome, Kim:
It's true I live in a thriving suburb in the middle of a university hospital campus. But most of my routine after the initial six weeks in a pool is done in my own bath tub. You don't need that much water to ease the muscles and the therapist should design an aftercare program with exercises you can do at home in the comfort of your own bath. The key is to stick with it 2 or 3 times/week and you will move better all week. If you don't have satisfaction with the first therapist , ask for another. Therapists should be teaching you why they are giving specific exercises and what the function does for you.
So sorry about the twin misunderstanding. Brownies are great! I was a scout. I don't know what made me think of boys, you really gave no indication.
Anyway, I think you could manage an hour hot bath for yourself 3 days a week and see how you feel with music and no exercise. Then just do a set of 10 leg lifts, stop if it hurts before ten. If it hurt at 2, make that your goal for the next bath. Then increase as your body can tolerate it, but never overdo. It's actually been proven that music (particularly classical) actually changes your brainwaves into a state of relaxation which unconsciously rests all your muscles. Combined with the warmth from the bath, a person can feel pretty good! Well, it's free anyway.
I do hope you feel better and send many smiles.
Warm wishes,
Canary
Hi there water therapy is available with most PCT's.. and your consultant must understand and make sure that you have the right pain relief, you need to seem them or your GP and explain how difficult life is getting and that you need physio urgently, and that many with your condition seem to find water therapy good. If you sate your case explaining that you have no help and that your young children depend on you being as fit as possible, this may swing it in your direction, please do let me know how you get on. Mary F x
I have to do the house work in very small stages. we recently bought a dishwasher as it was taking me up to an hour to wash up and i would be crying with pain well before i was finished. Ive learnt over the past few years not to do more than my body can tolarate . i now have a cleaner once a week and another lovely lady who does my ironing. My husband says its worth the cost so he doesnt have to see me crying with pain and taking to my bed for days because of the fatigue. I really hope you feel better soon
Kimmi I can empathise with you completely. I feel like everyday is a fight. I cannot stand for many minutes before I get intense back pain, walking is the same as is any job like hoovering or bending down.
I am 50 but have a lazy teenager at home who gives me tons more stress than she should. Shes immune to my pain just lives in her own head. She's put us through hell recently and worn me out.
I have a business too which is home based as I thought I could manage better than going out to work.
I go around my home which is too big and see cobwebs, dust whatever in feel I've failed. I used to be able to keep up to it, always cleaning I was. Windows outside every week etc. I never do them now.
I seem to spend more time moaning than cleaning as everything is so hard.
Sorry I seem to have just shared my sob story.
Jade your life sounds like mine to the t , i beat myself up everyday , this needs doing that needs doing and i just walk past and leave it , my kids are good apart from the teenagers who just turn around and walk away and leave me in tears ,this condition is cruel most gp`s dont know much about it i am going to see if i can get the water therapy because i think i need it and hopefully things will improve thank you everyone for your advice and support it really does help kim x x
just another question does anyone with mobility problems get high rate disability ???
My Granddaughter is now under the care of Prof Hunt at St Thomas' - Thank God! and yes she has all the same problems as you and has done for the past 10 years gradually worsening over that time - she is on morphine patches and still has to take other painkillers to ease the pain so you are not alone out there! keep positive and be kind to yourself x
Yes, I get higher rate mobility DLA, and I would say my fatigue and mobility problems are far less severe than yours Kimmi. You just have to know how to fill out the wretched forms!
Another suggestion vis a vis house guilt. (This helped me alleviate my guilt.) Make a list of all the cleaning stuff that needs to be done -- you can start with the obvious stuff and then add to it as you go. Say, for example, I will dust this room once a week -- say, Mondays. On Tuesday I will dust this other room, on Wednesdays I do one load of laundry, on Thursdays I iron 5 shirts (no more!) and so on. Then, when you walk by that cobweb wafting from the ceiling you say to yourself, -- Friday! Thats your day. Friday! All you need to do on a day by day basis is what is on the list for that day. And trade about is fair. If the guinea pigs totally mess a floor and your kids just can't/won't clean it appropriately (in my house it was succession of pet rats/ mice/ hamsters/ gerbils and guinea pigs,) then you clean up the mess and move everything that was on your list 1 day into the future. Your house may not look tidier, but adherence to that schedule can be quite emotionally liberating. It focuses you on what you DID do and not what you did not do.
Gina
hey i understand about the dla forms they are very hard to get through i also took my time and i think that it was around 6 weeks before completion , i am tho very interested in the pip , not heard of this and would like to find out about what it is and how it works ? i worry so much about contacting dla incase they change the rate that they are giving me for the worse as i need help with most things , your shedule gina sounds exhausting but i see totally what you mean i am going to make the children clear up there guinea pig mess and try to do a list each day of small jobs that i can cope with and try to focus on what i have managed to do rather than feeling a failure because of what i cant do. Thanks Kim.
I get DLA, the CAB helped me to fill out the forms, they seem to put it in words better than I could.
hi guys,, Omg i know that feeling of tiredness,, i have 23 and 19 yr old a child at 13 and a 4 yr old and APS and im 40 this yr but feel like 140, that feeling of your body shutting down on you and the pains like being hit by a bus is so depressing,, i too used to be fit and healthy and be in the gym and now i cant do the school run in the morning i have to wait till my body decideds to move so i can do the hometime run, if it wasnt far my family i dont know what i would do,, ans im forever at my sons school with the ADHD and stuff just goes in 1 earand out the other,, i dont know whats happening to me,, iv been refused DLA 3 TIMES SO IV GIVEN UP ON THAT,, ITS SUCH A LONLEY WORLD, but nice to hear other peoples storys,, goodluck everyone x
Hi Sweett: Gee, you certainly have your hands full. My son had ADHD with an exceptionately high IQ (for what ever THAT is worth). The thing that helped us the most was parenting classes. Yes, believe it or not. All those classes and the jist of it is consistency. One word. If you can manage that you are doing better than 80% of parents out there. It amounted to retraining of the parent, not the child. It worked. Stopped all raising of voices, all punishment did NOT include physical punishment (spanking, slapping of hands, etc) "Time outs" replace corporal punishment. It's a program that works and enhances as well as places emphasis on the child's good qualities. Even if you have to look really hard at first, believe me, the program works if you can stay consistent with yourself, each other (parents) and then your child. It's a good program for single parents as well.
Guilt does absolutely no good whatsoever. Pack it up, kick it out the front door and leave it there! It just has no business in your house. Some days are good days, some days aren't. Take it as it comes and make the best of what is there. It sets an example for your children whom, as you well know, are picking up your every action at all ages. Give yourself a break, because if you don't listen to your body, your body will figure out a way to MAKE YOU LISTEN. Generally, with a TIA, stroke or some sort of flare. How long have you been diagnosed with APS?
Sweet t: I think you should place more emphasis on YOU and less on the messy house. Employ those kids to do their share of the household chores. Develop a short, light, daily exercise program. Do it for one week and see if you have more energy at the end of the week. When was the last time you saw the doctor? Could a medication adjustment be in order?
Take care of your self, Sweet t. Think of all the good times ahead and try to think positive. I know it's hard. It was hard for me. I was told at 49 years old that I had under 2 years to live. I am now 60 and still laughing in the faces of the doctors who told me that. I'm here. Maybe the worse for wear, but I'm here. My mind is sharp, my health is controllable, my kids are grown adults and I thought the really hard part was over. However, multidiagnoses have occupied most of my time to manage. But I never stop trying to do better. Even if I think I'm doing fine, I still try to do better. Because I can't even remember what "normal" is. So I just keep trying to be better.
Get rid of that guilt sweet t. You'll feel so much lighter. It's better than losing 30 pounds!
Warm wishes and plenty of smiles to you,
Canary
Canary you are very inspirational like a personal trainer lol i would love it for you to move into my house , i have girl twins at 9 and a boy at 11 but the worst one is the 17yr old who is adhd , i agree with you about the programe you talk about we had alot of help and support with him and we where taught how to deal with him , he had terrible violent tantrams but they soon calmed down after the program started , i would definatley recomend it , our lives became so much easier , im not saying it`s easy coz it isn`t , but well worth while.
Sweet t i know how you feel im the same , are you on warfrin? i find it hard to get motivated some days im in pain and so tired i can hardly move , i really do try hard but it just gets to you , are you filling the dla forms yourself? it would be a good idea to get cab to help , the form is very hard to do for yourself , and they know just what to say.
Im always around for a chat if you want. Take care Kim.x
hiya Cannary and Kimm, diagnoised 4 yrs ago after 3rd blood clot and migrains and previous miscarriages yes i'm on Warfarin, 8 daily and 7 Sundays and Propranola for migraines and Pregabablin for my back,, iv have done Webb Sratten course for behavior management and ADHD and ADD courses till they come out of my ear, self-awareness and self -a steem courses and i was an infant TA "although you couldn't tell by my spelling" and worked for Bernardo's and run my own after school and holidays activities,, but yes you are so right i think i need to take a step back and reassess where i am and take control again, i'm trying so hard to do a walk a day after school with my little 1 and spend quality time with her as a lot of my time is on Ronan, but it is so easy to climb back in that bed and stay there,, No one in my family has heard of APS so they just think its being put on,, iv even printed off stuff for them to read but it 1 of them, if you have never had it you wouldn't understand,, i just keep quite now when i'm in agony as i say to myself there are worse people out there than me, but that's getting harder now the pain is getting stronger,, yes iv my GP and sent me packing with leaflets about APS and send there is no symptoms with it so you should be feeling no pain so i cant go back there becousei feel likeiv moaned enough,, and i'm waiting to see my Haematologist in march but don't to complain for no reason., Thank you so much for replying to me, when i am sat in my room in the dark it just feels like i'm the only 1 in the world and there is no one to understand my feelings xx
sweett i do so feel for you as i completly know where you are , i have had an awfull day in so much pain from my toes to my throat , it has had me in tears , i made myself go out shopping with hubby and kids with my stick , but just couldn`t make it so ended up in the wheelchair , there are so many people out there who are in pain with APS maybe consider seeing another gp from your surgery as he/she is wrong , dont give up on getting help because there is help out there , maybe you could contact the heamatologist for an earlier appointment , keep chin up i have been thinking about you.Take Care Kim x
gggrrrr i feel like im going to explode, my blood results came back and my gp has reffered me on to the rhematoid doc`s at the hospital, my cholesteral level was 13 and now also am on statins for high blood pressure, it`s just one blow after another,im sorry that im having a moan but i have no one to talk about this and how im feeling, thanks for listening kim x x
ps sorry about the spelling.
APS/strok 
Can you clot even if taking Rivaroxabin daily?
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Headaces and Fragmin (Dalteparin)
