Am I mad ?: Well yes I am slightly... - Hughes Syndrome -...

Hughes Syndrome - APS Support
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Am I mad ?

pinkyandperky
pinkyandperky

Well yes I am slightly, always have been. When i first found this wonderful webpage i started to take aspirin as a little experiment. What had i to lose? i was in constant pain with knotty lump muscles in my triceps thighs hip area and back in fact every muscle except my stomach. my trigger point therapist would ask every week what have you been doing? I was so tired!! would wake repeatedly at night with numb hands and arms with pins and needles if that make sense? my legs would jerk about on the sofa when resting and my head felt heavy almost a headache but not quite, my vein by the back of knee was very hot and swollen.

Today I was thinking i have not been woken with pins and needles in ages or had a headache it doesn't hurt to move and i am not so desperately tired ( when i was a child i used to get home from school and go straight to bed!!). I think this is great.

i still have corn beef skin and white foot or or white hand in the cold, but i always have had.

I am still waiting to hear from the haematology department at Derriford hospital. I hope it will be soon now the holiday have passed.

I also received a lovely email from Professor Hughes via the charity website. He agrees it is certainly worth investigating the possibility of APS again.

I do wonder is this all in my head? should i continue taking the aspirin 75 mg every other day now. I was taking 2 x 300mg a day at first but once the symptoms started to disappear i lowered the dose. sorry i know it is really bad to self medicate.

Happy New year by the way.

12 Replies
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HollyHeski
HollyHeskiAdministrator

We are all so used to experimenting to see what helps - for you its worked.

I wouldn't stop as 75mg every other day is working for you and hopefully you will get your appointment soon?

The only thing I would advise is make sure you take aspirin after food and if you get any indigestion/tummy issues then stop.

So glad you heard from Prof Hughes too, gives us confidence to keep working at getting quality of life.

Let us know how you get on with specialist xx

I wonder if you have read "Sticky Blood Explained" by Kay Thackray? Kay has APS herself and prof Hughes has said himself that this is the best book written about APS. I agree!

A good book to understand that others are also "crazy" and that this is normal for us to feel that way especially if we have a Doctor who does not understand......

Good Luck with that Specialist and to get the correct treatment. Glad that the Aspirin has worked and that you have also heard from prof Hughes!

Perhaps a Specialist will go further and make a trial of LMW Heparin and see how it works with you if he thinks you have got APS.

My advice is that you continue with the 75-100 mg of Aspirin. As far as I know you can take that rather low dose every day if you take it with food as HollyHesky says and you do not get any tummy issues.

pinkyandperky
pinkyandperky
in reply to Lure2

hi I received the book sticky blood in the post yesterday, It is really good i need my husband to read it!!! when i was pregnant i had to take heparin as i developed a dvt in my thigh and groin. Then as the baby was very poorly and they had to take her out at 29 weeks i had to have an ivc filter fitted and later removed. The heparin i found helped with the dvt pain and blood filling up sensations enormously. Hopefully I will see a specialist soon and find out if I have this condition. Not sure why I am getting all these symptoms if it isn't.

thanks for listening.

KellyInTexas
KellyInTexasAdministrator
in reply to pinkyandperky

I have learned that very good doctors are often investigators. The brilliant mind is ever curious- within safe parameters.

That’s where years of clinical practice becomes important in the field of expertise. Not only will the doctor have years of hands on experience, but lots of reading, and on going lectures to balance and update in tandem with what his clinic experience is teaching.

This is why we say on this forum- it’s so vital that a doctor with APS knowledge is key.

Experiment away within safe limits. Know the limits.

As my Hematologist said, “ always start by borrowing the least amount of risk. “

lupus-support1
lupus-support1Administrator

You should take the enteric coated, as it is kinder to the tummy. I agree with HollyHeski - take it after food.

Even if this is not APS, you should be examined for autoimmune diseases.

It's not in your head - and thousands of people will agree that this is what they feel as this is passed on from the doctor who doesn't know. If necessary, see a good rheumatologist.

No, it is not good to self-medicate . . . . . But in your case, I think you have done the right thing.

May I suggest that before you see the specialist, write down, in chronological order, your symptoms from as early as you can remember. Include all the questions you want to be answered. How many times have we "remembered" after leaving the surgery!

May 2019 be healthy and happy.

With good wishes,\

Ros

Thank you! great advice, I freeze like a rabbit in the headlights at the doctors and do not say what i want coherently. I always think I should have said this or that about 10 minutes later when I have left. Also I tend to forget everything the doctor has said as soon as i leave the room. The amount of times my husband has asked what the doctor said and i answer that i have forgotten.

If you ask for a copy of the clinics report they will send you one at the same time as your GP.I always find this enormously helpful as my brain is like a sieve.

HollyHeski
HollyHeskiAdministrator

Hi, take your husband or a close friend with you too.

I too used to be afraid to question or even disagree - I've now learnt to do my homework and question without emotion, know what I want to ask, to the point now I am listened to and have a mutual respect with my specialist in my treatment going forward. This has taken time, so please don't be afraid, this is your future.

MaryF
MaryFAdministrator

HI, a lot of us started on a safe dose of Aspirin as we waited for diagnosis, and it would be best alongside that to have the medical overview, hopefully your specialist at Dartford is off our recommended list, (under pinned posts) on right hand side of forum, also some on here, on our charity website: ghic.world/ Make sure when you see the specialist that you investigate your B12, D, Folate, Ferritin and a Thyroid panel alongside the obvious tests for Hughes Syndrome/APS. The fact that the Aspirin is working is certainly a clue.

Happy New Year to you also!

MaryF

No, you are not mad. It is interesting that you are posting the day after my neurologist’s appointment when he decided to do a little experiment for the three to four months before my next visit. It is: continue low-dose aspirin for two weeks and record symptoms on a scale daily; then add one low dose aspirin for two weeks, recording the symptoms; continue altering every other week. So you are giving your doctors important information. If you have anti-phospholipid antibodies, symptoms can respond to aspirin. Mine do. I would recommend staying on the lower dose until you get evaluated. Try to remember the details of your decrease in symptoms and make a record. Please report back. K

Hi, That is a lucky coincidence. Yes i definitely will. hopefully will see the specialist soon.

Listen to your own body! Granted, our ego can get in the way, but your body tries to communicate with your conscious self, from dreams, or just a nebulous feeling. Sounds like your body is shouting with a megaphone;"The asperin is what we need!"

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