I feel awful

[tandtsmith]

I have hughes syndrome. Does anyone else feel very tired and have a lot of migraines. I need to get back to work and i cant go back if i continue to feel like this.According to my rhemotologist, my hughes is primary. Any suggestions?

[paddyandlin]

Hi tandtsmith,

A large percentage of Hughes patients have the fatigue issue you are talking about and as such so far there have not been any way to get rid of it there have been a number of disscussions on diffrent things to aliveate if you type fatigue in the search box you will see all thye disscsssions so far.

I do take plaquinel (hydroxacloraquin) it has helped with some of the symptoms and a little bit withy the fatigue!! May want to ask your doc about this as other people have had great changes with it.

Also have you spoken to you work they may be able to make reasonable adjusments like felexible working working from home etc, they cannot just fire you that would be discrimination, A number of people have gone self emplyed route as some are still emeployed i think it will be around what you feel you can do and what your employer is willing to do.

Are you in the UK or america? I can give you some links to help

paddy

[MaryF Administrator]

You describe very familiar symptoms... I have this, and so does my young daughter who has just started on plaquenil, which we hope will help her!. Mary F x

[Manofmendip]

Hi.

I havd been diagnosed with Hughes Syndrome sine 2002 and have suffer a lot of different symptoms but certainly fatigue and migraine. The migraines stopped when I was put on Warfarin with and INR level of around 4.0 but they returned in late 2009. I was put on a low dose of Amitriptylene and this has stopped them.

What meds are you on? It sounds to me like you should be on Warfarin with a reasonably high INR.

Best wishes.

Dave

[tandtsmith in reply to Manofmendip]

I am on 70mg of lovenox injections and 5 mg of warafin. last week, my inr levels were a 1.2 so they are trying to get my levels straight. Thanks for the advice!!

Best wishes to you also!!

[Manofmendip in reply to tandtsmith]

Hi again

I'm not surprised that you are having migraines with an INR of 1.2, my personal experience is that I need an INR of around 3.8 - 4.0 before symptoms ease; what have your Drs said that your target INR should be? However, as I noted earlier my migraines returned, after 7 years, and I have to take amitriptylene as well now.

The Lovenox should be helping, I would have thought, until you INR is in a theraputic range for APS. I have to take Fragmin shots when mine is too low. Fragmin is a low molecular weight heparin and in the UK the dose is in IUs (International Units). I take 5,000 IUs daily as a prophylactic dose, if my INR is too low, or a 15,000IU dose if I have to come of Warfarin for surgery etc.

Best wishes.

Dave

[tandtsmith in reply to Manofmendip]

I got checked today and I am a 1.6. I was explaining to my hemotologist today that I wanted my levels to be between a 3 and a 4, she said it was too high.

[Manofmendip in reply to tandtsmith]

Get your Haemotologist to write to prof Hughes in London and ask him what he thinks. INR for APS patitents needs to be way higher than it does for other conditions that require anticoagulation.

Dave

[vmaiden in reply to Manofmendip]

I find this interesting. My hemo isn't putting me on Warfarin (for now anyway), only 325mg of asprin. The reason - he states the APLS keeps me from stabilizing on coumadin. It's the process that started my diagnosis. A DVT and an inability to keep a stable INR. I went 9 months in and out of theraputic range. Perhaps a second opinion is in order as this is not the first time I've heard this about APS.

[Manofmendip in reply to vmaiden]

I was tried on Aspirin first too. My haemotologist told me that 75mg is all that is needed as any higher dose has no additional effect on platelet action. However, Aspirin made no difference to me and on after going on Warfarin, with an INR around 4.0 did I start to feel better.

[Gadgets]

Hi and welcome to "the club" This is the one really big thing for all of us with Huhes Syndrome.

I have posted asking for answers to a cure but so far no one has come up with anything.

Like Paddy I also take Plaquenil it does help to take the edge off the fatigue but after a whille I just take it for granted as part of my life.

I have found that I need a high INR (INR 4 to 5) to function better which also reduces the fatigue. I take 5mg of warfarin and this morning I am at INR 4.7.

My advice is to pace yourself, build up what you can do over many many weeks, rest, rest and rest when your body tells you to, otherwise the fatigue will just get you. I can now go many weeks but then out of the blue that horrid cold feeling creeps in on me and I have to rest.

I had a stroke on a plane in Feb 2007. After returnng to my job after many months sick leave I decided to leave and start my own business in 2008. I work full time but rest when i have to!

As Paddys said your employer has to make resonable adjustments for you to be able to carry out your job, its the law.

Or think about using your skill sets to go self employed?

I know it feels a dark time for you, I have been there too (as we all have) some worse than others. Fingers crossed with medication you will improve and be able to return to work.

Regards

Garry

[tandtsmith in reply to Gadgets]

Thank you!!I am attempting to start a Mary Kay business. I need a legit work from home job. i think that would be perfect for me. Thanks for the help. Best wishes to you!!

[haley]

Please try going gluten free. I was diagnosed with APS a year ago after a long history of headaches and migraines and fatigue as well as GI problems. It was suggested by a functional neurologist that I go off from gluten. My stomach improved first and for that I was so grateful. I was not expecting the headaches to disappear, but they did. Days past and then months. Wow! Gluten-free is not so hard and has lots of other benefits as well. Check it out.

[tandtsmith]

Thanks for the help. I was working overnight at wal mart when i experienced a tia attack. My job wants me to come back. I was the only one working because my husband was home with our 3 young boys. My husband is currently trying to gain employment, but slowly I am starting to lose everything. I am tired by 12:00. I need naps during the day. If I am like this now, I cant imagine me trying to work overnight. The advice is very helpful and I thank everyone from the bottom of my heart.:))

[tandtsmith in reply to tandtsmith]

P.S My rheumotologist told me that when I feel tired, to push myself to exercise. I explained to her that I have active boys that I chase around that are 9,5 and 1 years old. I guess that is not considered exercise. lol

[Hidden in reply to tandtsmith]

this advice doesn't sound right...but I will not contradict an MD in public.....try to get a 2nd opinion.....best place to go is a the Rheumatology Dept at a large teaching hospital....what state do you live in?

[tandtsmith in reply to Hidden]

I live in New York State.

[Hidden in reply to tandtsmith]

Albany Medical Center has a Rheumatology Center.

If you live near NYC I would check out any of the large Hospitals /also Westchester....I know Cornell-Weill Medical Center in NYC does research on APS

And if you live in Western NY I would check the larger cities.....

I would also go to apsfa.org Antiphopholipid Foundation of America website....and ask for referrals

[pumpkincake in reply to tandtsmith]

Hi....

Here is one of the most knowledgable doctors in New York concerning APS. Dr. Erkan, Rheumatology. Here is the link to copy and paste.

hss.edu/physicians_erkan-do...

Hope this helps.

Dr. Erkan along with many other physicians are on the steering committee for APS Action. Please take a look.

apsaction.org/

Best of luck.

[TheKid in reply to Hidden]

@tandtsmith - I'll be happy to contradict an MD in public, because most of the ones I've seen have entirely dropped the ball with regard to my APS. If you want to feel better my suggestion is that you eat according to the Autoimmune Protocol of the Paleo Diet as laid out at robbwolf.com. That means no sugar, artificial/alternative sweeteners, grains, legumes, nightshades or dairy.

In terms of exercise, I'm sorry, but exercising when you're fatigued is only a tactic to mask an underlying problem. Your underlying problem is, like the rest of us, inflammation which is likely being driven by diet and lifestyle.

I would encourage you to check out Dr. Jack Kruse's website (jackkruse.com). If you don't want to buy into all his theorizing, that's fine; but he surely knows his stuff about inflammation and how to treat it. He also knows about key vitamin and mineral deficiencies that also contribute to ill health. It is because of him that I had my doc take me off of Coumadin and start me on Heparin injections instead. That way I can benefit from Vitamin K, which is absolutely essential for artery and bone health and proper metabolic balance.

Eat as much wild salmon, sardines and other deep water fish as you can tolerate. Eat liver (preferably grass fed). Eat Kerrygold grass fed butter (the one exception to the "no dairy" rule), which is maybe the highest source of Vitamin K2 you can find. Krill oil is another good thing to take.

Eat 50 grams of protein with 30 minutes of waking, preferably at about 6:30 am. Eat lunch (if you're hungry) at 12:30 pm. eat dinner at 6:30 pm.

Go to bed at 9:30 or 10:00 if you can. Sleep is FUNDAMENTAL to good health.

if you want to exercise, do something stress reducing such as walking or maybe some yoga or Tai Chi.

All of this will hopefully allow you to heal your gut, regain proper metabolic functioning and minimize systemic inflammation. Once this is accomplished, you can start specific types of training. I would suggest the types of exercise found over at marksdailyapple.com.

I do not believe that they will find a "cure" for APS in our lifetimes. Right now, the money is behind medicine that will provide better management of the disease only. I therefore urge everyone to get as healthy as they can making sure that those aspects of your health that you can control, are fully under control.

I am personally trying Dr. Jack Kruse's Leptin Rx along with cold therapy as something that may help to mitigate if not send my APS into remission. I don't know if a full cure can be achieved, but I'm giving it my best shot.

Good luck. Stay strong.

[KJay]

I am not sure if you are into alternative treatments. I go to St Lukes in Stroud, Gloucestershire which are a Steiner NHS practice and are doctors trained in biodynamic as well as conventional medicine.

I have been having mistletoe injections for several months now. They were originally used in the treatment of cancer but it was found due to their stabilising effect on the immune system that they could also be used to treat autoimmunity. They are made by Weleda.

I am not sure that they have helped with my migraines but I think they have with my fatigue. I didn't think they were doing an awful lot until I stopped having the injections and over a period of a fortnight became more and more tired until I started the injections again.

They are not a miracle cure and I'm not sure of interactions with other medcines. My doctor offered me the injections because I can't take Plaquenil as it affected my eyes.

It's worth giving them a try if you can find a doctor near you who will prescribe them. The worst is that they won't do anything and hopefully they may help a little.

[Hidden]

I have felt all of the above ....I take Aspirin for my APS AND Plaquenil for APS and Non specific mixed connective disorder....for the most part I feel great....but if I get too tired or feel 'stressed' I have a flare-up.....flu-like symptoms.....the worst are the headaches....I take an anti-inflamatory/over the counter medication like Ibuprofen....seem to be the only pain reliever that works....My Rheum says since my problem is inflammation this is working, somehow.

I am lucky (or unlucky ) that at 63 I can work p/t and my son is an adult....It would have been a lot more difficult to deal w/ all of this and to have to take care of a family

Stay well

[lollierai]

hello, I was diagnosed only 2yrs ago now and i am the same extreme fatigue and migraines a plenty...i take amyltriptaline and pegabalin along with an assortment of other meds, i have found the ease some of the migraines but dont help the fatigue. i too am unable to work at presant and am struggling with benefits etc..i want to go back to work but am finding it hard ...hope your luck and health improve x

[Sarita]

Hi there

Lots of replies on this one but thought I would also reply. I take Sintrom and my INR is kept between 2-3. Sometimes I get migranes, usually when I havent had enough rest or I have too much on. The fatigue I experience sometimes is overwhelming, the only way is to pace yourself and prioritise, if anything can be slipped off the list completely, or pushed over to another day, then this is they key. Make sure you drink enough water as we are affected by dehydration.

Going to bed early is essential, and a really, really early night if you are exhausted. I do power lie downs, its amazing what 15 minutes lie down can do to make you feel a bit better, just to be able to get a bit more done.

I work for myself, its not easy either, I run a manufacturing business, it allows me more flexible hours, and I can lie down or do yoga in the back room. However when things get busy and it all goes crazy, then the customers needs have to come first and its hard to get enough rest and time for myself.

I can imagine I would have a terrible time having a job working for someone else as sometimes I make silly mistakes, through being brain fogged, or like one day I couldnt even speek, my brain seemed disconnected from my mouth, and I had to ask the customer to send an email instead!!!

Good luck with everything, keep going!!!

Hope my message helped

Love Sara