I don't know which group this falls under....

[Willow7733]

Today I. Having a hard day. I am part of the Hugh's syndrome group (because I have APS and have had so many blood clots in my lung). I am part of the asthma group on here because I have been told I have asthma for the past 7 years. That has now progressed to asthma/COPD. So I joined that community here.

I. Going through what I could call (and have been calling for the past 30 years) a "flare". I am beyond exhausted. By that I mean I just went out to get some groceries and it was a total struggle to walk back to my car. Not too breathless, but a deep down weighted feeling that I just can't do anything or keep my eyes open.

My joints hurt. My ankles, knees, and lower back. My skin hurts , - just the feel of my t-shirt on my upper arms are like steel wool on my skin.

I feel like the start of the flu, but I have been here before and know this isn't a flu I have.

I just don't know what it is. By the time I see my rheumatologist, and get the blood work, I am ok. Nothing shows up. So...maybe I am nuts?

I get nothing clear from my doctor's. The rheumatologist says it is one thing, then the pulmonologist totally shoots it down. Then the GP (who is amazing!) says something...and the pulmonologist says no. Everyone has told me it is something, and when I ask, the most they can agree on is bad luck. 14 pulmonary embolisms is bad luck? As angry and lost as I am, I have to agree. 🙄

I know we are not doctors here, but does this feeling sound even remotely similar to anyone's experience??? 30 years. I haven't gotten a straight answer other than bad luck. Even when I was a month in the ICU at the hospital.

I work in a hospital. Full time. On my feet Monday ay to Friday. Training almost everyday because nursing had high turnover in departments. I have researched my problems, but...I can't figure it out. Everything is so vague. And most importantly, I don't want to fall victim of reading so much in the books and on line that I start thinking every symptom is me! Some fits, some doesn't. And not all the time.

Sorry. I am so sorry. maybe I shouldn't even be putting this out there. It is not like me to be so down. I don't suffer from anxiety - and this isn't it. I am just so...angry.

[Tiggywoos]

jeepers ! 14 clots ? What the hell ?? I am so sorry you feel so terrible but I’m not surprised . You’re incredible for working full time but I guess it’s not through choice.

I don’t surprise you could have Covid if you’re feeling rougher than normal ? I see you’re in Canada and it sounds so similar to UK where left hand doesn’t have a clue what right hand is doing .

So sorry can’t offer anything more constructive but a virtual hug from a very wet UK xx

[Willow7733 in reply to Tiggywoos]

No, not COVID. We are tested all the time for it. I have felt this off and on for 30 years. I can tell when I am really tired, or stressed, or run down that this will happen. So weird.

[KayHimm]

Willow7733,

I’m with Tiggy and just amazed by the amount of clots. I know you have been tested for every possible problem that cause clotting but did anything show up at all?

Your sense of irritation with the t-shirt is making me think of my itching that turned out to be neurological, not an allergic reaction. Have you been to a dermatologist?

Are sensitive to temperature changes?

The « start of the flu » symptoms certainly sounds like how people with autoimmune diseases often feel. Do you take your temperature? I had frequent low grade fevers early on.

Anybody would be down with so many unexplained symptoms. You don’t know what’s wrong or how to help yourself.

Hope you get answers.

Kay

[Willow7733 in reply to KayHimm]

I have had pulmonary embolisms found while I was working (I work at the local hospital) and they called me to tell me. They just say keep doing what you are doing. The treatment is taking blood thinners, which I am on. Gee thanks. My coworkers are less than supportive. They hear me on the phone, ask what they found, and then give me more work to do. Part of my job is heavy lifting, but nobody even helps because this one has a sore toe, or a sore shoulder. I can't breathe! I am so stupid to stay when this happens. I should just go home and rest a bit. So tired.

I haven't seen a dermatologist at all. I should make an appointment with my GP to get a referral.

I took my temperature yesterday and I had a slight fever, so I thought maybe I am catching something. But this morning I am still not sick. - no cold or flu.

I have some blood work and urinalysis tomorrow, but with my luck, this flare or whatever will have started to pass by then.

[KayHimm in reply to Willow7733]

It does sound like you need a less physically demanding job and more sympathetic co-workers. You might want to ask your rheumatologist if your flares is sort of a worsening of your particular autoimmune disorder. APS is systemic. Maybe the symptoms you experience - achey and feeling like you are coming down with a virus - is all part of the autoimmunity.

Keep us posted. Hope you see a dermatologist.

xxK

[Willow7733 in reply to KayHimm]

That is a good idea. I really do need a less stressful and physically demanding job. I really would like to change rheumatologists too. I feel where I work now is just getting harder. It is also very stressful. And the more I read about stress, the more I realize it could be causing me more damage.

[KayHimm in reply to Willow7733]

Just a brief Google search got me to Reddit. APS patients on there are asking the same question you are. You might want to bring up the issues of systemic symptoms other than clothing on some APS websites and Facebook.

Your rheumatologist would be looking for signs if inflammation in organs, rashes, and certain signs in basic bloodwork. If he doesn’t see that, they aren’t suspecting lupus at this point. That is my take.

Other patients may be able to help with fatigue and joint issues. You probably can’t take aspirin but maybe Tylenol.

Best of luck.

Kay

[Willow7733 in reply to KayHimm]

He prescribed me Tramadol for the pain and when I got home instead that it has been banned in some places and it is very addictive. So I went out and bought myself some Tylenol Arthritis. I take two in the morning and two at night. It at least takes the edge off. My last appointment, four weeks ago, he looked over my medications I am on, and I told him I am not taking the tramadol because it scares me. He looks at me and says "oh no! Don't take that. It is very addictive!" Ummm ok... I feel very brushed off. My rheumatologist doesn't even deal with the APS, my hematologist does. And her advice is that it is my life now deal with it.

[KayHimm]

Sorry. I see you have confirmed APS. I have one of the anti phospholipid antibodies and autonomic dysfunction. I think there is a link. Has anyone thought of neuropathy with you? Just wandering if your skin symptoms could be related.

They may be watching you for further lupus symptoms. It isn’t common but it does happen. Are you just recently getting the flu like symptoms?

The detectives are in.

[Willow7733 in reply to KayHimm]

No, nobody is doing anything. My last rheumatology appointment at the beginning of September was a bust. I walked in, he told me I am sleeping well, I have no pain ( he said he can tell by looking at my face just now), and he will see me in a year. That was it. It took less than 2 minutes.

[Mimi1900 in reply to Willow7733]

You said you have RA also - what medications do you take for that. I trust at least hydroxychloroquine? Since you have Hughés Syndrome are you taking blood thinners V AI Chatbot says:

The joint pain associated with APS is usually not inflammatory and is less severe than full-blown arthritis. Non-steroidal anti-inflammatory drugs (NSAIDs) have little effect on this type of joint pain.

Many people with APS have no symptoms and feel well. The goal of treatment is to prevent thrombosis or miscarriage, which is usually achieved through early diagnosis and the right combination of drugs.

The joint pain associated with RA however is inflammatory. Are you being treated for that?

[Willow7733 in reply to Mimi1900]

I am on hydroxychloroquin and for pain I am on Tramadol. I am going to stop the tramadol and take Tylenol Arthritis instead because it scares me. I don't need to be addicted to anything - I still work full time in the hospital and need to be clear headed for my job.

I have been on and clotted on every blood thinner out there except heparine. Right now they have me back in warfarin. It has failed me 4 times now, but I am hopeful the pulmonary embolisms stop happening.

My arthritis goes back to when I was 9. I am 51 now. It was/is inflammatory. My wrists, knees, ankles and lower back is affected.

[Mimi1900 in reply to Willow7733]

I’ve read there are issues with tramadol (bkz it has an opioid attached to it?). Anyway where I am they do not prescribe tramadol for RA/SLE arthritis. If you have significant pain they recommend trying Cymbalta (I did after much trepidation) and took it for awhile but there were side effects (very dry mouth and I have secondary Sjogrens) and at least for me it only helped pain a little. I also take 4.5 mg Low Dose. Alfredo e which I have to have done at a compounding pharmacy and my insurance does not pay for 😢 but I take it in hopes that it has some effect on pain.

The most effective drug I have tried so far is Methotrexate.

Wishing you the best.

[LesJames]

Willow I have APS and was diagnosed by Prof Hughes,as all the tests came back clear. Even when I had Sepsis my bloods were normal. I found that having an increased INR 3.5-4.5 helped me with my symptoms. Dr's are reluctant to say this but when my INR drops I suffer.

[Willow7733 in reply to LesJames]

I get so frustrated because they are keeping my INR below 3. I keep getting new clots. So then they tell me I am on Warfarin, keep doing that and call us if anything new happens. And I am sitting there thinking... Like what? A stroke? I am frustrated.

[Mimi1900 in reply to Willow7733]

This is 2022 research article out of Switzerland which explains perhaps what you face getting treatment:

Antiphospholipid syndrome (APS) is a systemic autoimmune disease characterized by the persistent positivity of antiphospholipid antibodies (aPLA) together with thrombosis or obstetrical complications. Despite their recognized predominant role, aPLA are not sufficient to induce the development of thrombosis and a second hit has been proposed to be necessary. Moreover, decision on which patients with aPLA would benefit from an antithrombotic prophylaxis and its optimal intensity are challenging because of the lack of stratification tools for the risk of thrombosis. Finally, decision on the optimal type of anticoagulant drug is also complex because the central pathway responsible for the development of thrombosis is so far unknown and should be carried out on an individual basis after a careful evaluation of the clinical and laboratory features of the patient. This review addresses the epidemiology, physiopathology, diagnosis and management of thrombosis and obstetrical complications in APS, with a special focus on the role of direct oral anticoagulants.

J. Clin. Med. 2022, 11(23), 6984; doi.org/10.3390/jcm11236984

mdpi.com/2077-0383/11/23/6984

[LesJames]

I had the same trouble, My doctor said I could not possibly have another clot, because I was on warfarin. It was professor Hughes who put my on an INR of 4.5 I had to reduce it after some time because I was bleeding into my muscles. But, if my levels drop then I feel rough. For some reason they cannot understand that.

[Willow7733 in reply to LesJames]

I have this bad pain up by my collar bone on the right. Like something is there, Buti hate to tell my GP about it. He is very good - will send me for a scan within an hour, but the last two didn't show up anything new. All my clots are not being absorbed by my body and are staying as large as they were when they first happens. They are calling it chronic clots. I don't know. I feel it is nothing new though. So not worried.

[Mimi1900 in reply to Willow7733]

I would get the scan and not to feel bad at the scans that didn’t show anything. I don’t want to frighten you but I’m sure that you know you have a life threatening illness and you are your strongest health advocate!!

[StriatedCaracara]

Fatigue:

You may relate to Shannon Boxx, The American lady soccer player talks about the aweful fatigue she suffered. Olympian and World Cup winner too, her lupus story at the end of the linked video on the heart is inspiring (about 1hr 2 mins in):

youtu.be/_A1FCGuders?si=raO...(Not working as expected?)

[Willow7733 in reply to StriatedCaracara]

Wow!!

[StriatedCaracara in reply to StriatedCaracara]

I also like this other Lupus Foundation of America video which emphasizes the breadth of symptoms and refers to sensation as like that of 'never-ending flu'.

youtu.be/RvqfsAMQ3Ic(Not working as expected?)

When in remission energy returns and we don't get issues like joint pain, fevers, neurological symptoms etc etc etc

Pretty bread and butter stuff, but consultants might like more than our accounts of symptoms. They are looking for signs. Guess depends on consultant you are seeing.

I think I only want to see ones who will believe me and have sufficient experience to know the patterns

[Suvi8901 in reply to StriatedCaracara]

Does she mention APS specifically?

[StriatedCaracara in reply to Suvi8901]

Yes, and other things, saying what is it...

Others picked up on APS, so just added in links for Lupus too..

I like videos...😊

[Brychni]

Oh yes; I totally understand! I've got things in my blood but don't which antibody is causing which problem. Ans with every test there is something new...and they don't explain anything aaaarrrgggh!

[StriatedCaracara]

I personally think a lot of the antibody tests don't work for everyone and a lot of the autoimmune situation is not understood.There are thought to be four sub-types of SLE for example. How often do sub-types get discussed?

There is much that is unknown and better tests on the horizon maybe.

healthunlocked.com/lupusuk/...

[Willow7733 in reply to StriatedCaracara]

My hematologist said that once. There are diseases out there not discovered yet. Which sucks for those in limbo and who are suffering. I think I may have to call in sick tomorrow and that sucks. I don't have any sick days left. I need to work.

[Brychni in reply to Willow7733]

Same here. Literally unable to walk for more than 5 minutes (10 minute walk from car to work which I used to enjoy). Started steroids today and will be off probably til Friday.

[StriatedCaracara]

Take care. Thinking of you and hope you get the rest and help you need. 🙏 I am in my sixties and now retired. It makes me so angry when I think back to what I endured at work. I had to work too. As time went on I probably got more assertive, finding allies at work and home that related to as much as possible and escaping for lunch etc.

I tried to make sure my last employment had better managers, and did find a job where they cared more. This helped.

[Willow7733 in reply to StriatedCaracara]

Thank you much for your help. I appreciate it more than you know.

[Suvi8901]

Hi      Willow7733 ,

Try this forum specifically on Hughes’ Syndrome/APS:

healthunlocked.com/hughes-s...

Useful with lots of links on APS!☝️

Specific blood tests for anti phospholipid syndrome (APS):

aps-support.org.uk/about-ap...

An excellent summary.

Regards

[Mimi1900]

you mentioned rheumatologist. Do you have Lupus or RA as well as elevated anticardiolipins/phospholipids? I ask because you mention you are part of the « Hughes » syndrome group. In the 🇺🇸 it is called simply elevated anticardiolipns/antiphospholipids with or without clot and is associated with Lupus but can also just be a standalone syndrome.

[Willow7733 in reply to Mimi1900]

I have lupus and RA as well.