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Sticky Blood-Hughes Syndrome Support
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I am new to this aps world

I am 38 years old and I had 7 miscarriages. I have just been diagnosed with APS .I struggle to get over the flares up because they are so painful. My migraines are very strong every day all day long.i have Reynolds syndrome and livedo retriculars .i have a really poor diet because I have a sever IBS and lots of allergies and intolerance. I can't find a doctor to listen to me and try to help me. I found hard mentally to know are some days when I can't go to work or do anything because the pain and migraine..I wish I can have a normal life again .thank you for your understanding. Have a nice day.

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Hi, I'm really sorry for your losses.

Its really important for you to get an APS specialist who can get you on the right anticoagulation. We have a list top right hand side of forum. Also look at ghic/world.

What are you taking now? A lot of your symptoms could improve with the right anticoagulation. MaryF will also tell you to get your thyroid, B12 and iron tested.

Wheat intolerance is also very common for us.

I feel your sadness, which is totally understandable, with the right specialist, support and treatment, you will get some 'normality' back.

Keep fighting, its a hard road but hopefully you will find friends on here that have similar experiences that they will share with you xx

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I am on clopidogrel at the moment but I feel it doesn't help with anything. How can I get the appointment with the nhs specialist from your list .My thyroid is normal but I don't know the rest of them .My gp is rubbish and is hard to get a referral or a blood test. I am intolerant to wheat and gluten and I eating free .thank you very much

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Have you found a specialist off the list near you?

Where are you so others can share their specialist with you?

Once you decide which specialist is best for you, take the details to your GP and request a referral.

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HI and welcome, so sorry to hear you have had such a dreadful time, a familiar story on here. You really do need your GP to refer you to one of our specialists off the list, over on the right hand side of the forum under pinned posts. If this is trick, take your most trusted friend, relative, colleague or neighbour with you to push for this. It will help your GP manage your care better. I also enclose our charity website which you could email to them or their secretary: ghic.world/ I am sorry you have encountered so many losses, my own sister lost seven, so I know how difficult that is.

Most with our condition do better not eating gluten, I have been off it completely for years now, often the thyroid antibodies, which a lot have, get very confused with gluten! You also need to be tested to see what your B12 levels are doing, plus your D, Ferritin, Folate and a proper thyroid panel. Unfortunately often the only test done is the TSH, I was told over and over again for years that my Thyroid was fine, actually when I tested myself via Blue Horizon, (I did the Thyroid plus 11), my Thyroid showed up as being fully dysfunctional. I am much better with that these days.

Often the trio of disease is Hughes Syndrome/APS, SJogrens and a Thyroid disorder.

MaryF

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Bless u. I really feel for you. I understand although I’m not in ur body I too have had those awful symptoms and thoughts.

Last night as I laid in bed every bit of me hurt. Every finger and toe and everything in the middle seemed to be screaming in agony. Tears ran down my face and I wondered if I should even bother to stay alive. I understand the depression I too suffer. There is no wonder we feel like that we have so much to cope with and how can anyone understand how desperate we feel. We crave normality.

My dad has a saying; “Soon you will be looking back on this...”

I have said that to myself in the darkest of days and sure enough better days come.

Stay strong. Use my dads saying and believe it to be true. Somehow u will get through this. Do u have someone to talk to? I go to see a counseller and that helps - just to say how I really feel. Remember u r loved xxx

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Thank you very much for your understanding and support. I do have my two dogs to help me stay fit even I am struggling sometimes and to realise my stress and anxiety. I am lucky to have a boss really on board with my ilness. Take care of yourself. Xx

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Hi Adinina

It took me over 12 months to get a diagnosis and another 12 to sort the rest that goes with it . It was hell . The best thing I did was see a private specialist at London Bridge he the wrote to my GP with an action plan . I now see all specialists under one roof at Manchester royal and it has helped , they can all see what’s going on at each clinic and actually talk . I don’t live near Manchester but it’s worth the trip . I have APS and heamaplegic migraine and no thyroid. It’s been the migraine that’s been the tuffest . I take Amytriptyline for it and it has changed my life . Don’t give up hope, my good days far exceed the bad now .

This group is always a huge support as we are all in the same boat xx

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Thank you very much for your advice I will try to go private and see if I can get my treatment more quicker. Xx

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I am, glad you found it here, after we spoke. There is a list of doctors who are experts in APS/Hughes Syndrome, which is why I directed you here.

Under Topics, on the right hand side, you will see APS Specialists!

It is not unusual to also feel you don't have "a normal life" and given everything that has happened, I would not be surprised if you felt depression and/or anxious at times.

If you want to talk, just contact me privately again, as you did before.

You are not alone!

With good wishes,

Ros

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Hi thank you very much for your direction. I am sometimes struggling to coope with the illness. Do you know how long a flare up can be ,Because I have join and muscle pain,migraine with dizzines spell and fainting feeling and a very strong fatigue. I had all this for 2 days and not sign of improvement.my blood pressure is lower than usual.i don't know what to do. Thank you

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There's no standard time for a "flare"!

My first advice is to go and see a specialist - not all rheumatologists are expert in APS or even Systemic Lupus Erythematosus. They may want to investigate further because many of us have more than one autoimmune condition. At the very least, your symptoms must be treated, with or without a diagnosis.

If your BP is abnormally low - go to your GP immediately! This can also account for your feeling poorly, especially the dizziness & fainting.

Don't leave it - book an emergency appointment now!

Let me know how you get on!

With good wishes,

Ros

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I have been today to the urgent care because gp didn't have appointment available. They said I need to have blood tests but they cannot do it and I need to go to a&e.i am going to a&e when my husband is coming from work because I cannot drive like that.

About rheumatologist how do I know which one is good just to ask him when I have my appointment.

Why is so hard to get a treatment?I am so tired of going from one doctor to another one .

Thank you very much for your answer and thoughts.

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Hello there Adnina😍❣️ I am honored and delighted to meet you, fellow dog lover🐶! (I have a corgi who is my most adored and appreciated seizure alert dog❤️)

But I was so sad and so sorry to hear that you're going through such a challenging time😢; it broke my heart to read through the long list of hardships and concerns you're struggling with--so much so that if i had a magic healing wand, you would be healthy and whole right this very moment, because I would have showered you with magic pixie dust the instant I first read your letter😍.

Alas, I do not possess such a wand (though I DO have one from Ollivander's Wand Shop (not the one in Diagon Alley, unfortunately😋, but it was still delightful to purchase an official Ollivander's wand from a satellite store in the Wizarding World of Harry Potter in Orlando, Florida😍), but if I'm ever fortunate enough to find a real live magic wand, my offer to cast a healing spell for you still stands😄--there's no expiration date on magic and miracles, (or sparkly magic pixie dust; EVERYbody loves sparkly magic pixie dust😍!)

I don't know what your diagnoses are, but I'm assuming that one of them must be APS, since I found you in this forum? According to my doctor, APS is one of those rare diseases that very commonly co-exists with a handful of similar disorders.

In fact, of all the patients that I know from my doctor's practice, I can't think of a single one that has APS and nothing else. It's so funny😊; our charts look like a recipe for alphabet soup😋: This patient has APS and Sjogtens; that one has APS, Ehlers-Danlos, and POTS; and so far, I myself have been diagnosed with APS, POTS, dysautonomia, CVID/Combined Variable Imunodeficiency, Mast Cell Activation Disorder, and RSD (there are several more that I'm leaving out, because they aren't among the list of the most common co-morbidities with APS😉)

So I can empathize with your frustration and your grief and your heartbreak😢. The last year and a half have been little more than multiple weekly 6-9 hour infusions, a lot of tinkering with does and flow rates and pre-meds, and--since those infusions and the medication experiments are super hard on my system, I've been bedridden for almost every day in between, fighting the effects of the anaphylaxis I almost always develop during each infusion, and the aseptic meningitis that is inevitably and unceasingly triggered by the IVIG😬

Many many times (this autumn especially, as it is too beautiful a season to miss😮) I have listened to the birds splashing in the bird.bath and the kids laughing as they go off to school and the wind kicking up the dry leaves; from my darkened room with ice packs wrapped around my head, I feel so isolated and heartbroken and fearful...I've been sick for so long, virtually incapacitated for over a year, and I desperately miss the life I used to lead before my illnesses worsened, and I'm terrified that this dark room and these ice packs will be my life forever😢

I've always known I couldn't be "cured", but I had high hopes for "improvement"; after so many years of getting worse instead of better, I can feel my optimism slipping, especially when the world outside my darkened window is especially beautiful and appealing, as it is in October😋

I don't mean to complain😍❣️ Forgive me, I only meant to express my support and understanding and empathy for what you're going through😢. And I wanted to share my doctor's findings (she's a pioneer in the study of APS😋), because I think they might be interesting to you😉

As I'm sure you already know, fatigue, muscle pain, and migraines (especially migraines!) are common effects of APS. So I was thinking it might be possible that you might need to switch blood thinners? Or change the dose? Or add another medication,? I don't know if that's something you've already tried, but there have been many many testimonies on this site from fellow APS patients that notice a world of difference in their health and well-being with very small increases in their dosage, and many more noticed a positive difference when they switched blood thinners. ☺️

But my treatment for APS was pretty disappointing for the first few months after diagnosis; I didn't see much improvement, which meant that overall I still felt very poorly. But at that point I was diagnosed with dysautonomia and POTS, and when my doctor started me on treatment, I finally started to experience a measurable difference in my condition 😍

Both of these illnesses commonly cause severe fatigue, dizziness, lightheadedness, fainting, erratic heart rate, arrhythmias, and large fluctuations in blood pressure. In fact, of all the disabling illnesses I've been diagnosed with, dysautonomia has been the most crippling; the unpredictable variations in vital signs, fainting in public, exhaustion so severe that it's all I can do to just keep breathing in and out--anything more than that often causes me to be sick, or to faint, or to break out on a cold sweat because my heart rate shoots from 60 to 190 and tricks my body into thinking I'm running😬

Luckily, my doctor knows a lot about dysautonomia/POTS, so we've been tweaking a treatment plan that has been tremendously helpful in many ways😃 I take various medicines for heart rate, blood pressure, and fluid balance, but for the symptoms that you mentioned in your post and that are extremely common in dysautonomia/POTS patients (I think you listed dizziness, strong fatigue, low blood pressure, and fainting?), here are the home remedies (by which I mean, things that I can get without a prescription) that have been beneficial:

(1) Compression socks: In dysautonomia and POTS, the nerves that are supposed to automatically contract, and thereby force blood up from your feet to your head when you change position or stand up don't work properly, which results in dizziness and fainting. Wearing the socks during the day keeps me from fainting whenever I have to stand in one place (like a grocery store), which is a common trigger for dizziness and fainting.

(2) Sea salt: I try to take at least two tablespoons per day and more if I can; it helps the body conserve fluid and therefore keep your blood pressure up (or raise it if it's too low).

(3) Fluid: Of course, drinking as much water as you can during the day is a great stabilizer for blood pressure. My doctor also prescribed saline/electrolytes IV bags that I can infuse through my port every day at home; these always make me feel lots less shaky/dizzy/lightheaded/weak, keeps my BP up, and restores electrolytes that I often lose due to malabsorption. And it's really nice sometimes to be able to get a lot of fluid in me without having to chug three gallons of water from Walmart😋

(4) Put a couple of two by fours or cut blocks under the legs at the head of your bed, which raises your head above your feet; this keeps the blood better distributed, and I rarely ever feel dizzy or faint anymore when I get up in the morning (a small but noteworthy accomplishment, since I used to faint four mornings out of seven😳). Other options to get the same effect is to stack several pillows under your mattress at the head of your bed, or simply place the stack on top of the mattress--whichever is most comfortable for you😋. I also place two standard pillows (stacked one on top of the other) under my knees, which keeps the blood from pooling in my feet, and instead ensures it stays in my pelvis and torso, which makes me a lot less dizzy when I sit up or get out of bed😁

I'm sure I'll remember more tips soon😋, but for now, I hope these are helpful. (There are also some heart rate stabilizers and blood pressure medicines that I've been prescribed, and they're indispensable😃). Even if you haven't been diagnosed with dysautonomia or POTS, these recommendations are really helpful for dizziness, nausea, fainting, lightheadedness, weakness, and fatigue,--no matter what the cause😍

A few more tips: The severe migraines that I used to suffer with almost 25 out of 30 days have gotten much better (and are certainly more manageable) once I started treatment for APS, dysautonomia, and POTS😍. Since I have all three diseases, I was put on a specific protocol addressing each one, so I can't say for sure if my improvements are the result of only one treatment approach, or all of them combined, or some varied percentage of the three😊. But they definitely helped a lot, so even if you can't get tested for these disorders yet (dysautonomia and POTS are diagnosed by a tilt table test, and occasionally an abnormal sweating test; the equipment is usually only in hospitals, and the tests are usually performed by cardiologists and/9t an electrophysiology department ), you can still try these tips and experiment with them😍

I was probably tried on a dozen different medicines in an attempt to control my migraine pain (migraine medicines, muscle relaxants, narcotic painkillers, NSAIDS, and many more), and although a few of them gave me partial relief, some of them caused intolerable side effects, and my doctor and I never did find a medication that offered complete relief.😢

As it turned out, I stumbled upon that magic medicine completely by accident one day, because I was ordered to take it while I was getting three months of round-the-clock anti-viral infusions. And wouldn't you know, this medicine has been around forever, and it's inexpensive, and for me, a very small dose is sufficiently effective. It's a steroid called Decadron (during my IVIG sessions, the nurses use SoluMedrol, an IV steroid. It's been incredibly helpful, I can't recommend it enough😃 (of course, I'm no medical professional--far from it😜!--so you should probably ask your doctor if he or she thinks a trial run of this medicine would be helpful for you😋 All I mean to say is that from personal experience, this cheap, old, commonplace medication has bested every other thing I tried when it came to controlling migraine pain, and I'm hoping your migraines might be managed by it too😍

My doctor also added Benadryl to my headache regimen, and it's been a very reliable and effective method of preventing and/or controlling headaches. I happen to have built up a tolerance to it, so I don't get knocked out when I take it, but a lot of people are, so take care if you do decide to try it, so you will be safe until you know for sure how it affects you. Otherwise, it's great to take if you have s headache at bedtime or on weekends, because it not only lessens swelling and pressure, but it makes most people fall asleep more easily, which is a great blessing for those of us who suffer migraines, and have spent countless sleepless night's crying and pacing and unable to get even an hour's rest😳

As for muscle pain, my doctor said that APS can cause malabsorption, which explains why I'm constantly extremely deficient in potassium, iron, Vitamin D, and magnesium, even though I take daily prescribed supplements of each😬 Low levels of potassium and magnesium never fail to cause particularly severe symptoms, including muscle pain/spasms/contraction of skeletal muscles/weakness. So perhaps it might be worth it if you take supplements of those two in particular, and the others if you feel it's a good time to add more of them in? It can't hurt, and is much less expensive than prescription meds, so it could be worth a try😄

OK, I'm going to run out of space to type if I keep this up, I can't believe how long this post is😮. I didn't realize that was the case while I was writing; I got kind of absorbed in the process😋. I really really hope that something in this post is helpful for you ; I felt so bad for you when I read your post, and all the symptoms you're suffering with😢, so I was praying that I could think of something that might be of some help to you☺️ Let me know if you have any questions, or need additional information about something😄 Meanwhile, I hope you feel much much better very very soon, and that you're able to find the source of your symptoms , so that you can maybe avoid them in future😍 Best wishes, and take care😍❣️

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( we have the same doctor.)

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I'm so sorry for your losses it must be a awful time. I can relate to migraines they are horrible.

I.dont know much about aps other than I can't have children because of it tried and failed as now I don't ovulate, got told if I was lucky I would suffer miscarriages so i stopped. We were devasted as you are I imagine.

I'm under one that doesn't know much about it which isn't a good start. I've only been diagnosed 2 years and don't know anything other than i feel so poorly all the time which they blame on my fibromyalgia

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I know how much we all suffer but I hear u both are in bad places. It’s so sad that u have had so much hurt and loss around the desire and drive to have a child. After 6 years I was blessed to carry a child (now 25) I would have liked more but that wasn’t to be. Now there are things a good APS specialist can do to help.

I wish I could tell u how long you will feel so poorly the main thing is to get things in place for when u have bad days. Help support an emergency box! Never give up. A Duvet Day now and again isn’t giving up

Remember lots of people love u and value u.

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I started sometimes hating doctors because nobody listen to you and they are give you answers from internet or books.if you are trying to tell them something they are ignoring your words.my dogs know me better when I am not well more than this doctors I saw for my illnes listen .you need to push your way to them because otherwise nothing .take care of yourself and don't give up .xxx

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Give meditation a try. When ur body won’t comply u still have ur mind.

Meditation fundamentally is not connected to a religion and has many benefits mental, emotional and physical.

Guided meditation allows ur mind to be led to a quiet peaceful place & be free for a while.

A good meditation will talk u through how to relax ur body. Then to switch off (or turn down ur brain) so that ur mind can be free for a while.

It is liberating and can be used (once learnt) as a form of pain control.

I teach meditation locally and I even had a client in St Thomas’s Hospital London as well. I’ve had referrals from GPS too.

I can E-mail u a sample one I recorded if anyone wants to try - pm me ur e-mail address. There is usually a charge but I’m offering it free to my friends on here.

There are lots of meditation groups out there - admittedly, some groups do have religious leanings but in my opinion all meditation helps. Give it a try. They say 20 minutes a day is worth a few hours sleep. At least it gives u time off of stress etc 💋

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Hello everyone/ just wondering how you are all doing now? 💋

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