At a loss

I had a brilliant weekend best I've felt for ages. Then today I felt awful. Exhausted and hurt everywhere. I have hardly been able to walk for the pain in my hips and legs.

I checked inr it's gone from 4.4 to 3.4.

I'm sitting here crying in pain and frustration . My husband is sick of it. Today was his only day off this week. I made myself go out because it looks bad I've been able to do things then when he is off I can't so I forced myself but in agony now. I just don't know what to do

I haven't got a question I just wanted someone to talk to really. How can I live like this? Is it worth the fight? How much more fight do I have?

16 Replies

oldestnewest
  • Hi,

    I am so sorry you feel so bad at the moment.

    I know you told us about your Rheumatologist who said that you should raise your INR and also remitted you with an emergency appointment to Canteberry Hospital ASAP.

    What happened to that? Are you seeing someone?

    We feel always bad when the INR is too low and I know you told us that when your INR was higher you felt better with the horrible headache you had for so many days.

    Please do not give up now. You have been here and have helped so many others on our site with answers and encouragement. Fantastic really. I am sure things will be better and you are on your way now.

    Take care and a big Hug to you from me!

    Kerstin

  • At Canterbury hospital they raised my inr to 3-4.5 with a view to keeping it 4+ and I cracked it for 2 weeks then with no reason bam!!! 3.4 hurting all over. Headache ...

    I had the migraine for 9 weeks in the end. I don't mind admitting I almost opted out a few times. I couldn't sleep, talk, read, watch tv, work, anything except complain and moan most days

    So when I thought I had got there I expected the better health and pain relief to last more than a few days .

    I don't think anyone can help me to be honest 😢 It's always going to be like this so what the point in fighting on? For what? I'm sorry to bE saying this stuff

  • Hi Wendy

    Don't forget you are among friends here.

    Who is managing your APS?

    Dave

  • My rheumatologist is excellent but the inr is managed by the anticoagulant clinic in Canterbury Hosp x

  • Ok but you need to go back to your rheumatologist and discuss the issue that you are having. Dave x

  • I am supposed to have an appointment in April so will discuss then.

    I eat similarly each day and on the same meds so don't understand why inr is so erratic. If it could just stabilise I'd be so much better. I know how good I can feel. So why won't it just behave???

  • Hi Wendy, saw your post....there is hope, there is always hope and you are not alone. Our blood has a mind of it's own yet I will reassure you that those of us on here understand.

    One of the things I have learned to do is hydrate constantly, water is absolutely crucial as well as healthy living and eating. I myself have gone completely gluten free and vegetarian...not Vegan as I like fish and eggs :)

    I saw your post and had to sigh on your behalf as I have been there so many times before wondering why I feel so "off". Its difficult when it is so invisible to others yet our bodies say otherwise. Its hard on our minds, yet we must prevail. There is so much more life to live, count every single blessing. Good news is that you are here to speak on your behalf, we have our wits somewhere about us still even in our worst feeling of this disease. So keep up the good fight. Hope you are feeling a tiny bit better

    Becca

  • Thank u Becca. I do feel more rested now (and stopped crying) I spoke for an hour on the phone to mum. I did some mindfulness colouring and watched some good tv.

    U say healthy living. I'm glad it has helped u. I did that and cut out dairy, sugar even fruit sugar, yeast, gluten (all wheat etc) but after a dry disciplined difficult whole year and no change to my health I slowly returned to normal eating.

    I don't drink alcohol very often but had a cider this evening as I know alcohol thins the blood.

    I'm hoping the increase from alternating 18 / 19 mg of warfarin to 19 mg daily will help too.

    I'm usually very positive and practice meditation & Reiki but sometimes it is just too hard.

    Thank u all for ur kind words.

    💋

  • Hi there. In my experience this is quite a normal pattern. I get the same.... Good for a few days then crash. I think it may be because when we are feeling well we do too much! Pacing is so important. Just be kind to yourself. And can you give your husband that letter to friends and family? If it is not on here I will find it for you. I know my husband struggles. Don't give up....hopefully better days ahead. Blessings Ann

  • I'd love a copy of that letter. I'll pm u my email address. Thank you 💋

  • Hiya! I agree with London-lass. Whenever my inr is 4.2 - 4.6 I feel brilliant and so do things, lots of things, hoovering, cleaning, shopping, you name it I do it!! Next day I can hardly move and feel so poorly. The Inr nurse checks my blood and sure enough it will have dropped. She tells me it's because I do so much when feeling better it's works at your metabolism which in turn affects the blood / inr and back to square one. So when feeling better just do little bits and the better feeling may last longer. I do know exactly how you are feeling as does everyone on this site. You are never really alone. xx

  • My understanding is that those with LA antibodies in particular find it more difficult to stop their INR from fluctuating. That means no matter how good you are with diet and everything else, the body is unfortunately just going to be working against you. Some patients in this situation have decided that the swings are just too much and have switched to LMWH. For some reason, because this drug works differently to warfarin, this seems to be better for those patients. For others adding in an ante-platelet like aspirin or clopidogrel can help because it stops the blood from being so sticky where as the warfarin in simply thinning. Wendy Im assuming you are on Plaquenil as that can help with the aches?

    Im also sure we have asked this before but have you had a proper check of your Thyroid? That means FT3 and FT4 and both Thyroid antibodies? Also your Vit D which must be at least 75 or over. Ferritin should be up to almost 100 or the thyroid won't be working properly. Another thing you could look into is magnesium as that can help with body aches. Has your B12 been checked as many of these symptoms cross over.

    Pacing is extremely important for all of us with any condition. If we have something that we must attend then we have to prepare for it, that means conserving energy before hand and afterwards spoiling ourselves with more rest. If things are difficult with family life then you HAVE to ask for help. Trying to be all things to all people will not help you or them in the end and you will all end up suffering as a result. I can perfectly understand the logic in not wanting to spoil a partners day off but surely if you sit down and have a frank conversation about how you are feeling, you could find something else you could do together that would be less energetic or taxing. Im sure your other half would be mortified if he knew how bad you are feeling now. There is the Spoons Theory which is about pacing. I have put a link here:

    butyoudontlooksick.com/arti...

    Have a read and see what you think and perhaps find your own way of explaining to your other half and family how you are feeling but its essential that you do.

    I also will put up a post in a minute which is a letter written by someone after a brain injury. Its on similar lines as above but anyone who has had a stroke will also know exactly what she is talking about, I certainly did, so I know it may help some of you.

    Hang in there Wendy, it will get better. x

  • Thank u. I was put on Planq and after 3 months I felt loads better. I went to London Bridge Hosp for a check up to find my heart was funny. A long story that ended up in all of us have a genetic heart condition called Long QT that some drugs make worse and can cause death - hence I'm very limited with meds and if it had not been detected and Plaq stopped I could have died! 😞 I know it helps but can't have it.

    I will discuss all the blood tests in April with my rheumatologist it would be helpful if u could message each one I need and the recommended levels. And where to go for thyroid checks. Thank u I do appreciate ur support.

    Mums been to see me today and prepared dinner.

    My daughter in law sorted the washing and son (only child) hoovered. My ex foster daughter ate with us then tiedied up and washed up, she has slept over too. Mums coming again tomorrow. So I'm very lucky with support . But it still doesn't stop me feeling desperate then I feel guilty as others don't have that support and here I am crying

    I think my husband is just sick of my illness now and doesn't know what to do. I know he loves me but can't cope anymore. We married at 20. It's 30 years this year!

    I have the spoons theory it's brilliant but yesterday we had to go out as r oven broke and we need a new one - sometimes we just have to do stuff 💋

  • I get that. I also think if your hubby has hung around for 30 years he obviously loves you very much! Perhaps when you have the opportunity of your extended family support you can give him "permission" to go and have some boys time with his mates, that way you both get a break and will feel better able to cope. I've always thought that having good communication is the best option as we are all stressed enough coping with the condition, we don't therefore need the extra worry of the feelings of our other halfs or family.

    If you are getting a reactive depression starting to build up, don't be afraid to speak to your Dr as this can happen when coping with chronic conditions. Don't try to suffer in silence seek help before it gets too bad.

  • Hang in there Wendy- I'm saving this post from you. I'm going to tell my hematologist here in the. USA you said this about your INR number and pain increase and headache return. so he can understand how much better we feel when our INR is higher- it's so important! I'm just now getting close to three! My hematologiscitvthinking 3.25 and see how it goes. But it feels some days like my upper thighs have literally been hit with a base ball baseball bat. It resolves much the same way I've noticed- time wise. Is this normal with just APS alone - The muscle pain?

    I'm so sorry you are having this pain. I don't understand why it happens. I'm trying to remember to drink more herbal mint tea. Toxins in muscles?!?? I'm glad you did go out with your husband. I figure if we are going to feel crappy and sore, we can do that on a date night with our husbands almost as well as we can do it at home, as long as we are not in the throes of a horrible APS flare or actual migraine. Sometime a low key relaxing evening having special time just the two of you together can be really better than any medicine. Kersten recommended Kay Thackrays book, sticky blood explained. I did buy it and read it. I liked the fact that Kay addressed the emotional aspects of APS ( any chronic illness) on the family. Especially the marriage. Assuming the marriage is fairly normal and healthy, I really liked Kay's wisdom on taking a step back sometimes- everyone- and just taking a few deep breaths! Whew!

    It's really easier said than done. I have to work on this and say- "we ARE going to have happiness and JOY in this home and marriage. We have worked almost 30 years now to make it a priority and APS cannot take center stage."

    Not all the time. Yes. Some times iAPS will have to take center stage and that's just how it is. That's when there is no compromise. That's where we are hoping your situation will improve. Enjoy the good moments- take those steps back when you can- breath- see if some healing might begin- so understanding from familymight also begin? All sounds so simple but of course I'm sure it is not. Just wanted you to know I care so I took the time and love to send you my warmth. You sound like you could really use it right about now. It's from Texas- so my warmth is pretty darn warm and sunny! 🌵🌮🌶☀️

    (Sadly there is no margarita emoji! However, "cheers" to the next evening dinner date with your husband- and I sincerely hope your INR will at least be at 4 and your symptoms will be in your rear view mirror!)

    Kelly

  • Thank u Kelly for ur reply. It always helps to know others are supporting u, even if they tease u with that sunshine! ☀️ Lol

    My thighs really hurt, just as u describe. When I read ur comments I said YES out loud because that's exactly it.

    I think this is why:

    When the INR is below 4, our blood is too sticky and therefore cannot carry the level of oxygen to the muscles (and every part of the body) that they require.

    When the muscles are suffocating they send a message to the brain saying "I'm struggling here - help me!" This message is translated as pain.

    The natural thing when the brain receives this message would be to try to correct the fault - but there is nothing that can be done. It cannot control the thickness of the blood. So the muscles scream louder, pain intensifies.

    The only solution is for more oxygen to reach the muscles. The only solution is to raise the INR.

    When the INR is 4+ the right amount of oxygen is transported around the body and hence we feel well.

    My whole body screams in pain when my bloods too thick I feel Ilike I'm dying.

    I suggest u print out a body outline and map every symptom u experience on it so the doctor can see at a glance what's happening to you. (Don't forget over sensitivity to noise, light, smells, stimuli etc)

    I also took a list of all meds (inc over the counter drugs), a list of all medical professionals she ate caring for me

    I also wrote a letter using excerpts from Prof Hughes Blogs and questions of the month and references from the books I'd read.

    The thing is doctors are scared to raise the INR because they fear a bleed, but Prof Hughes says

    "This is a clotting disorder and not a bleeding disorder!"

    Good luck & thank u again 💋

    Private message me if u want to and I'll send u a copy of the letter I sent to the doctor.

You may also like...