circulation Boosters

[Molly100]

Hi

I suffer with terrible cramps and leg issues after DVT's and nerve damage after 3 back ops, and I was looking at circulation boosters that you place your feet on like a vibrating plate. Has anyone used them and if so did they help?

Thanks

Sue

[MaryF Administrator]

Hi, I know some gyms have similar for exercise, however I seem to remember they may not be advised if people have chronic conditions. If I were you, I would check with your main consultant before shelling out any money or trying, it will be interesting to see what they say. MaryF

[MaryF Administrator in reply to MaryF]

Further info, this may not be of course the same thing, but regarding the vibration plate exercise machines: healthyliving.azcentral.com...

MaryF

[Molly100 in reply to MaryF]

Thanks Mary

I will look at the web site.

[Lure2]

I suggest you shall try to get a diagnose and an APS-doctor. If I understand you right you have none of those two most important things.

I also suggest you read "Sticky Blood Explained" by Kay Thackray. You can buy it on the Foundations charity website. It is exstremely good to begin with.

Also look at hughes-syndrome.org/selfhel... specialists in your area.

Good luck from Kerstin in Stockholm

[Molly100 in reply to Lure2]

Hi Kirstin

I have been diagnosed with APS at London Bridge and have a good GP and have also read the book you refer to. I just do not want to take anymore drugs than I need to and thought the circulation plates would maybe help. It is always helpful to get advise from people who have same problems and have used them. But thanks anyway.

Sue

[Lure2 in reply to Molly100]

I read your story and there I found that you had not had a diagnose but found out about it yourself. I also understood that you had not an AS-doctor which is very important with this illness.

There are very few doctors that know this illness. So I suggest that you try to find an APS-doctor and he can perhaps help you with your problems without giving you more drugs .Perhaps the opposite; he can take some away, given by a doctor that do not know of the condition.

Hoping you can start to feel better soon.

Kerstin

[Molly100 in reply to Lure2]

Hi Kerstin

I was interested in what you said about finding an AS doctor. I have a GP who is very good and I have been to London Bridge where I was diagnosed last year but no one mentioned an AS doctor. I just muddle along and yes I knew I probably had Hughes years ago but no one wanted to listen and it was not until i insisted on being referred to Prof Hughes that I got my diagnosis. I actually saw Prof D'Cruz and it was such a relief to finally be told that I did have Hughes. There is also no one in my area or indeed at my doctors who has it! If I ask my GP anything he normally says that I probably know more than him anyway!! So did you mean an AS gp or a Consultant as I was not sure?

Thanks

Sue

[Lure2 in reply to Molly100]

So sorry. I wrote AS (I saw it when it was too late.) It should ofcourse be APS.

Sounds so good that you have been diagnosed by prof Hughes. Very good indeed.

But what you need is an APS-doctor that knows more than yourself (as your GP said). This is really important. I know that for sure.

I do not know if you can see prof Hughes again but you should have an APS-doctor that can tell your GP what to do. So many organs can be affected by APS. I Think I have had at least 8 -10 different types of doctors with this illness. This APS-doctor can adjust the drugs with your needs. (Hope you can follow me. I miss some English words sometimes.)

I mean it is good if you do not get too many different drugs which perhaps you do not need.

Do you have good control of your anticoagulation? If we are well and stable anticoagulated we feel much better. It is astonishing how important that is I have noticed.

Hope you stay well and happy.

Best wishes from Kerstin in Stockholm

[donnabrain]

I have a circulation booster, with some chronic conditions they are recommended and if your condition is on their list you can claim back the VAT

HOWEVER, you must not use one if you have an existing clot as it can cause the clot to move putting you at risk of a pulmonary embolism

[Molly100 in reply to donnabrain]

Hi

Thanks where do you get the list from? My clots were years ago as I have been on warfarin for about 10 years so it would be fine. do you find it very helpful?

Thanks

Sue

[donnabrain]

If you google the product and go on its website it will have the list

To be honset I really couldnt say as I have used it all of three times

recently got it out again and promised myself that I will do it daily

maybe when the teen goes back to school in Sept lol

you have to pay upfront and then they send you a form to fill in and then a cheque

you can buy the unit in three interest free payments though

[GinaD]

I had several DVTs in the 80s. I was put on warfarin for only a short term because I was not diagnosed with APS until 20 years later. Non- pharmacology, physical modifications undoubtedly help. But if you have sticky blood it is highly unlikely that physical exercise and adjustment will eliminate all the clot triggers. Before resuming warfarin in 2001 I had TIAs and mini strokes which left me with a hole in my visual cortex and balance problems. The DVTs scared my legs with prominent vericose veins which can bulge and ache. Both vision and balance have improved with time, but you should factor the damage clots do to your body into the " to medicate, or not to medicate" question.

Warfarin actually has few side effects. It's reputation as a dangerous drug comes from --remember! -- non APSpatients, usually people who take warfarin after heart valve replacement. We Hughies have sticky blood. For us, warfarin does not treat a discrete sticky spot within the miles and miles of our massive circulatory system. For us, warfarin and other decoagulation drugs treat a massive circulatory system which is inherently sticky along its entire length!

Good luck, and let us know how things go.

[Molly100 in reply to GinaD]

Thanks Gina

I had a similar experience to you I also started with symptoms in the 80s when my daughter was born although I had problems with the pregnancy but not too bad. Then I had my first DVT in the early 90s and four more after that! They just told me I had sticky blood but it was not until my daughter was pregnant that the midwife told her there was no such thing as sticky blood on it's own and that there must be another reason for being on warfarin that I decided to go ahead and get a proper diagnosis. I was very lucky though that they put me on life long warfarin in the 90s. I too think that the clots have caused problems with my legs but it has not helped having 3 back ops in the last 4 years.

I was just trying to find something to stop my legs playing up and thought the circulation booster looked like the way to go. I do walk alot and go to the gym which really does help.

Thanks god for this site eh!!

Sue

[Ladydale]

Yes I use them and they do help.i have aps. The only time to not use is if you have symptoms of DVT.