I just feel sooo ill & im getting worse!

Hello again, it seems I'm always moaning, but don't know what else I can do.

I'm lupus anticoagulant positive I also have; Sjogrens, Lupus, Fibromyalgia, 4 prolapsed discs & a heart condition called Long QT (adult cot death syndrome)

My INR is kept between 4 & 4.5. I take 18-20mg warfarin daily.

I can't take Pantilquin (sorry spelt wrong) coz it nearly caused me to have a heart attack.

I was on Methatrexate injections but felt so sick 6/7 days after 2 years I came off it. I now take azathioprine, mepacrine and this year had to reduce from 10mg to 7.5mg prednisone and I take 120mg of Dihydrocodine continus twice a day for pain

The thing is I know my health is going down hill fast. It's scaring me. I am exhausted all the time, for example: Sunday I went out with my husband and dog we were out 30mins, a lot of that I was sitting on a bench, when I got home I fell asleep and woke up after 3 hours!!! I ache so much in my muscles after sitting just to eat a meal. Nights are torture. I have pain just about everywhere all day & night

My INR is currently 3.7 and I'm sure I'm having microclots as I get sudden onset random pains in my head.

I've had all the blood tests u suggest and I'm in range for everything (even Vit D, which is usually low).

I keep crying because I feel my active life is disappearing and I'll soon be housebound.

I'm trying to not be depressed (I don't want to scare off the few visitors I do have) due to my heart I can't take antidepressants. I'm having counselling and thought that it would be good to talk about how I feel but she is practicing a technique called DMER ???? so even that's not as I'd hoped.

My local rheumatologist (Dr DeLord) is great but can't think of anything else to do. I wrote to Prof D'Cruz ( my top specialist) and he didn't reply (tried phoning but never answered and answer phone is always full).

Haematologist is useless but finally agreed I need an INR if 3.5-4.5 and we try to keep it between 4&4.5.

I know this is a long post - but can anyone tell me what I can do before I have no life worth living left. I just can't cope with the pain & utter exhaustion anymore. As I have a lot wrong I don't know which condition causes it. Do u think it's the APS ? I do feel much better when my INR is 4.5 💋

31 Replies

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  • Forgive me if I am repeating myself with you. What level is your vitamin D, also our B12 and Iron, and if you have been told you have 'Fibro' then relying on the NHS to adequately test your Thyroid will not be good enough. The NHS only do the TSH, which is an unreliable test, patients are often told they are within range, when they are not. I do 15 or so tests at times for my Thyroid, which picked up clearly that I was severely hypo thyroid. Low Thyroid function can cause a heart attack and a full range of symptoms. I saved up and in doing so made my life a lot better as a lot of the symptoms I had like palpitations, an inability to sleep, an inability to fight infection went away, with my Thyroid properly medicated and my levels of D, B12 and Iron at decent levels. Thyroid medication will not be taken up by the Thyroid if the Iron in the body is low.

    I can't tolerate Plaquenil either I am on LDN and NDT, this suits me and has improved me, but I fund both of them.

    MaryF

  • Vit D - 120 nmol/l

    Ferritin 93 ug/l

    B12 721 ng/l

    Folate 13.4 ug/l

    Thyroid normal

  • Your Vit D is too low! Its been measured in nmol. The normal is ng/ml where the reading should be at least 75. Your result converted to ng/ml is only 48!

    You need to go and get some supplementation and do a loading dose for 3 months before reverting to a maintenance dose of around 1000/2000 per day.

    I use synergy biologics loading dose of Pro D 20,000iu 3 x a week for three months. I took it when mine was 32 so you may want to look at a slightly lower dose. They do say to take it only once a week on this page but my GP told me to take it 3 x.

    prod3.co.uk/index.php?route...

  • Thank u. I will print off what u have said and show my GP.

    Will health shops sell what I need?

    I take one ad all with vit D a day already.

  • Thats obviously not enough! The make above was what my GP prescribed to me so you could say that to your GP. It can be bought in HFS's but also on line directly from them or even on Amazon.

  • I'm so sorry you are having such a tough time of it at the moment. It's so difficult when you have these co exsisting conditions that create huge problems in the medications that you can normally take. It seems to me that there are two things I would do if in your position.

    1. I would discuss if adding an antiplatelet to your warfarin may help, so clopidogrel for instance.

    2. It seems reasonable to me that you need to be seen by a pain specialist. These are people who manage pain and are quite often anaesthetists.

    I would get an urgent appointment with your GP and discuss both those options. GPs can refer urgently especially if you say to him/ exactly what you have said here so that the desperation you are feeling comes across and cannot be denied. Tell them you can't wait months you need to be seen quickly. And take someone with you to back you up.

    If that does not bring a quick response then you may need to see a pain person privately. Where are you situated and I will see if I can help.

    Unfortunately you are suffering a reactive depression, in other words you are depressed because of what you are having to put up with because of your conditions and the affects they are having on you. It is different to other depression. Even so it will just magnify what is going on in your body and the pain that you are feeling.

    You have probably been told this before but I will repeat it again anyway, doing some form of relaxation or meditation daily will help with this. It does not have to take long, 10 minutes is enough, but done daily can help a lot. You can download some tapes to listen to or just lay /sit down in a quiet room, perhaps slightly darkened. You need to try and block out all thoughts and concentrate on what you are doing. Close your eyes, start at your feet, flex them and then completely relax them. Move on to one leg, tighten it and then relax. Move round your whole body doing this and try to notice how much better the relaxed feeling is in that part of the body. Try and push out thoughts of pain that might creep in. When you have done the whole body then picture in your mind a nice place like walking along a deserted beach or through woods or a field on a nice warm day. Anywhere that brings back positive memories for you. Then gradually bring yourself back to the room you are in. Sit lay quietly for a few minutes before getting up. If you do this daily it does make a difference and hopefully will help with the pain which at the moment is in a vicious circle.

    Please let me know how your doing but here's a big jentle hug! (((())))

  • A great reply, and I might add that I do Mindfulness Apps, for pain, insomnia, the whole thing, almost daily. Made of course by my husband who is a Mindfulness teacher and Psychologist. MaryF

  • Hi Mary,

    Lucky you!

    Kerstin

  • Yes very lucky. MaryFx

  • Thank you for your help. I have an appointment with the pain specialist at University College Hospital on 12/10 and made an appointment to c my GP on 1/9 (the first one)

    I actually am actually a qualified meditation instructor and have recorded CDs for it (ur description was good 😃) but... I must admit I have not been doing it myself lately. I will have to start again 💋

  • Thanks taken from the Pain Management course I did some years ago but its stuck in my mind.

    See my reply above about your Vit D which may well be contributing a lot to your pain. If you have an appointment on the 1st Id ask her/him to prescribe.

  • I wonder how often you test your INR? I hear you say you feel best at an INR of 4.5. That I understand but the INR changes a lot so I have forgotten if you selftest rather often to follow the INR that is it kept at that level when you feel well.

    Best wishes and hopes that you will find a solution to your problems very soon!!!

    A Hug from me also!

    Kerstin

  • I attend a clinic every Tuesday but if it's far out I go more often.

    Self testing is one thing but it's buying £70 a month for testing strips that's the problem and then I would be under the care of the Haematologist not the clinic and they really don't get it!

  • Would you be testing every day? Test strips are £140 for 48 strips and when I decided to self test I figured testing twice a week would work out at around £20 a month or £5 a week and parking and all the hanging around was costing £2, so if they wouldn't prescribe them I would happily pay for them myself. I have at times tested on a daily basis but not routinely. I self test and self manage because I proved I'm better at it than the computer program, skipping doses and big drops and rises in doses are an absolute no no, I never adjust by more than 0.5mg and have a very narrow target range of 4-4.5.

  • Thank u. I try to keep between 4 & 4.5 as well.

    I go to my local pharmacy every Tuesday and I'm usually away from home for 20 mins (collecting prescription too) there's s free car park so it's no hustle. If it's out I can go Thursday or Friday too. So I'm not sure self testing would be of great benefit to me. But I understand for u it would be x

  • I am really sorry to read about your situation. I also think it is a good idea to see your GP and discuss your situation.

    It is always difficult to fully understand someone's situation, but I would agree with APsnotFab that reactive depression is not only common, it is "normal"! It would be most unusual for anyone NOT to feel depressed at some point. In fact, Dr David D'Cruz wrote the same thing adding, he would be worried there was some brain inflammation - meaning, depression is a normal response to a terrible situation.

    I think that you might consider counselling/psychological support - perhap ask your GP if this is available. In 2000, we set up a non-profit for online psychological support. I will message you privately and if you are interested, then you can contact me and we can speak privately. Full disclosure: I am a UK trained psychotherapist. This service is completely free.

    Those of us with SLE, APS/Hughes Syndrome, other autoimmune diseases and Fibromyalgia, have a difficult time physically and emotionally. Psychological support is usually absent because this nos not the domain of medicine, other than psychiatry. Drugs/antidepressants or anti-anxiety medication, may be helpful, but all of us need to talk - the proof: we are here talking.

  • Thank you. That's very kind

    I was actually looking forward to counselling but when I went I found it was DMER and brain spotting have u heard of it? What do u think? I'm usually quite open minded but it's not what my gp referred me for she knew I needed someone to talk to.

    As I said I'm not allowed anti depressants due to my particular heart condition. 💋

  • I am sorry but I do not know "DMER and brain spotting" - perhaps your GP could explain what this is because they are not something familiar in the NHS.

    Your GP agrees that you need someone to talk with and I agree. Can you return to your GP and ask what they can do?

    While anti-depressants have their part if someone is unable to function, they are not the solution because a drug cannot relieve someone of their feelings. What I mean is that the drug can lessen the pain of depression but it cannot deal with what is making you feel as you do. This is why the "talking-cure" should be part of the overall care of the patient.

    I think you should return to your GP and ask them to intervene. Hopefully, this will get you some kind of therapy. If not, we can think about how to get you some help elsewhere.

    With good wishe,

    Ros

  • Thank u I'm getting them on the NHS?

    Went today we just talked at the end she just said that she thought I was doing all I could to help myself and stay positive so no point seeing her again x

  • "Stay positive!"

    I am loathe to comment on a counsellor, but what what you say, I can understand your comment!

    However, might it be possible that she was saying that despite everything, you are trying to be positive and helping yourself, but . . . you could do with support?

    I don't know because I was not there - but it is clear to me that you need and deserve support.

    Can you say what you need, what would be helpful to you in terms of support?

    With good wishes,

    Ros

  • Basically she said as I was already doing everything I could she could do or suggest nothing more. Therefore it wasn't worth going again.

    I suppose the NHS can't provide someone for me to talk to every week can they. 💋

  • I think the NHS could and should, but don't! Mental health is not deemed important; it's the "cinderella" of the medical services.

    There may be other options for you. I don't know where you live, but is there a "Mind" nearby? They offer counselling services based on what you can afford.

    If you want to consider options, let me know.

    Have a good week-end!

    Ros

  • Thank u. I'm in Kent (near Dover) 💋

  • There is a MIND in Folkestone:

    folkestonemind.org.uk/

    You could find out about their resources. Usually, MIND will negotiate a fee that each person can afford.

    See what you think and you can contact them for more details. You will be seen by an experienced therapist who will assess your needs and what they can offer, or they may point you in another direction.

    If you want to discuss it further, please do so.

    Ros

  • Thank u for taking the trouble for me - I'm not used to that 💋 X

  • I am so sorry you are not used to being treated respectfully. You deserve better!

    Contact MIND and I should imagine they will invite you to see a qualified therapist who will give you an assessment ie what you need and whether MIND is able to help.

    I have wroked for MIND in North London. Each MIND is independent and the kind of treatment depends of who works there. If it is of any help, I am a psychoanalytic psychotherapist and would recommend this approach for you. However, there are other approaches and if you would like to talk to me about MIND, please do so.

    The most important thing is for you to get the understanding and support you need and deserve.

    With good wishes,

    Ros

  • Three cheers for our administrators..you are like gold..precious to us with such helpful info. Sound more like doctors than our own

  • Hi Wendy

    Im sorry that you are having such a tough time. You have a lot to deal with and talking about it with others is not at all moaning.

    I cant offer any advice really, save to say that hypnotherapy helped my depression, as does exercise. But can be hard not to be depressed when health feels like its getting worse.

    One thing I did wonder about is plasmapherisis. It has been shown to be a very effective for people with some autoimmune diseases, including connective tissue and blood clotting ones. Might be worth asking doctor about. Its also meant to be relatively free of side effects, as long as use frozen albumin and filter own blood. But I cant swear to this.

    Anyways, wishing you all teh best.

  • Thank u x

  • Have you ruled out food allergies? When it was discovered -by accident!- that I have gluten sensitivity, I was amazed at how much better I felt on a gluten-free diet. How is it that I could've been eating something for decades, all my life, which was making me sick and I had no idea? And it wasn't just my subjective feeling – my blood work with from triple positive to sero negative.

  • I had a whole year (23 years ago) with no wheat gluten sugar and followed the anti candida diet. Didn't change anything though. I'm glad to hear it helped u though x

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