CBT therapy

[Gasbag]

I am new to this forum but have found it really informative over past few months as had never heard of APS prior to my diagnosis. Since my recent diagnosis of APS and Fibromyalgia ( May 2017) I have been really struggling with symptoms. Been started on Hydroxychloroquine, and Amitriptyline but not helped as yet. Got letter today saying what I need is CBT therapy. I am not sure “talking “ about my pain and fatigue with a therapist every x2 weeks is going to alleviate it. Has anyone else had this and what was the effect?

[Wittycjt]

Cognitive behavioral therapy may help you to accept this disease. APS diagnosis is hard to accept at times. There is also a book that may help: “cognitive behavioral therapy for dummies” that others have expressed success with...best wishes, Cindy

[Gasbag in reply to Wittycjt]

Thank you so much, I will have a look at the book. I felt a bit upset when the consultant suggested this as I felt he was saying it was all in my mind and the pain I feel today is definitely real. I feel a lot more rational now and will give it a try as am desperate for any help. Thank you for your reply.

Best wishes

[Wittycjt in reply to Gasbag]

Sometimes the way they say things isn’t exactly what they mean and we can be very emotional when first diagnosed so don’t understand they really do want us to be better! Cindy

[Wittycjt]

Acceptance is the first step to devising a plan to get to feeling better, keep us utd( up to date)

[Gasbag in reply to Wittycjt]

Thank you so much, I will do . You are spot on , I am definitely struggling with accepting my “ new” way of life but I’m sure I will get there and tell myself every day I am better off than some and I have a lot to be thankful for. This forum has been a great help. Thank you for taking the time to reply.

[Lure2 in reply to Gasbag]

Hi and welcome to our friendly Forum where we try to help as we all have the same illness.

I wonder who diagnosed you and if you have some antibodies positive that point to HS/APS. Some of us get diagnosed by antibodies and other on symptoms. Some also on both of course.

I suggest you also read another book which many members find informative and good. That is "Sticky Blood Explained" by Kay Thackray who also have our illness. This book is also good for relatives as she talks about different symptoms and how it is to live with this illness.

The big thing with this illness is to get a Specialist who has had patients like us before and knows how to treat us.

Hope you stay with us. I am from Sweden and I have been here for at least 7 years now. Imagine!

Best wishes from Kerstin in Stockholm

[Gasbag in reply to Lure2]

I was diagnosed after having 2 blood tests that both showed positive to 3 antibodies, IgM, LA and beta 2. I also had symptoms. My GP didn’t really know what was going on but he did refer me to a Rheumatologist who seemed to know about APS. I am only on aspirin and Hydroxychloroquine and Amitriptyline for the Fibromyalgia . I am hoping when I see the consultant next time he will have some answers and hopefully address my relentless symptoms.

Kind regards

[Lure2 in reply to Gasbag]

What symptoms do you still have?

I suggest you read "Sticky Blood Explained" by Kay Thackray. She has got APS and writes about the symptoms and how it is to live with this illness. Good also for relatives to understand us better and how it is to have this illness. There are in fact two books but the first book is perhaps most important to read first.

When do you see your Specialist again? Hope he or she really knows autoimmun illnesses like our illness as that is exstremely important to be able to give us the correct and best treatment.

Kerstin

[Lure2 in reply to Lure2]

Fibromyalgia can also sometimes be mixed up with other autoimmun illnesses like Thyroidea or even Sjögrens. Therefor it is important you talk to a knowledgable Specialist of autoimmun illnesses. It is a jungle sometimes and we are in the middle of it if we do not get help.

Kerstin

[Gasbag in reply to Lure2]

Thank you so much for all your help. I don’t see my consultant for another couple of months ☹️I will certainly read up on your recommendations. My ongoing symptoms are joint pain and fatigue, constant headache , dizziness and I have been falling over, blurred vision and dry mouth with constant mouth ulcers. My memory has really suffered and some days I can’t remember my dogs name !!

This forum has given me hope and I now believe that with the correct treatment my quality of life WILL improve.

Thank you

[Lure2 in reply to Gasbag]

Hi Gasbag,

I am sure that with the right Specialist (very important) and treatment (also very important) you will be just fine!

Try to find out if this Specialist of yours, is specialized in APS and also knows Sjögrens and Thyroidea. Perhaps he is as he is a Rheumatologist and should understand about Sjögrens also.

Try to get him on the phone and tell him about your symtoms, especially that you do not remember your dogs names!

I remember one day, before I was properly and stable anticoagulated, that I could not remember if my parents were dead and the occupations of my two children.

You probably need "stronger" anticoagulation. Do not wait!!

Kerstin

[lupus-support1 Administrator]

I think there may be two aspects to your discussion. The first is accepting whether you are struggling with your disease. Learning to live with a disease has a tremendous impact on all of us individual and on our families. If someone denied they ever felt anxious or depressed at some points in their lives, I would be worried, that this person is cut off from all emotions, happy and sad, worried, stressed and so on!

Offering therapy is sometimes perceived as a "failure" or that there is disbelief they are ill, or as you say, "it's all in the mind." If I had a pound for every time I heard that someone feels disbelieved, I would be able to retire!

Cognitive Behavioural Therapy or CBT, is currently presented as "the" therapy in the NHS. It is a structured, manualized approach, which some people like. One of the reasons for CBT being promoted, is because it is seen as "cost effective." It is usually once a week, for a set about of sessions. It can be as few as 6-8 sessions. I have understood what you are saying that it is once every 2 weeks?

There is nothing to lose in accepting this offer and for you to assess whether it is helpful to you.

I will disclose to you that I am a qualified psychotherapist, but not in CBT. In terms of "talking therapies", I don't think it is possible to fully address living with a disease, in such few sessions. I am saying this because I am concerned that perhaps you might feel, (or you may not, as I cannot predict your feelings), that there is more to say after it ends, because who we are is based on all that has happened to us before being hit with a diagnosis.

I would recommend taking this opportunity for this course of CBT but to understand that there is a possibility you may want to explore your inner world more. It's not easy to "accept" and "move on!" It is not always possible "to stop negative thoughts!" People are complex. We may share certain aspects of life ,but your experiences are different from my experiences and no one can tell you what to feel or what not to feel, or think.

This will not be a magical "cure", it cannot "alleviate" what you are going through, but CBT might be very helpful to you as a starting point. The most important part of any therapy is the relationship you will have with your therapist.

I wish you well in this endeavour. It takes courage to let someone know your deepest thoughts and feelings.

If you want to talk about this experience after it ends, please feel free to do so as you may feel you would like further therapy, which may be available to you.

With good wishes,

Ros

[Lure2]

I think that the best help (incl any therapy) is to get a Specialist who understands how to treat us so we feel better and know we are in the best hands also with the right anticoagulation. Then we do not have to worry.

Also knowledge of our illness will help us to understand how to best attack the APS when it attacks our organs.

1) Knowledge of the illness and 2) a very special Doctor who knows APS and how to treat you in the best way, will help you further. To be true there are very few Doctors like that, so you have to look closely.

Kerstin

[Ozchick]

I guess the unanswered question I have is are you properly anti coagulated? Is your INR in range? This can also be a huge factor in how you feel.

[Gasbag in reply to Ozchick]

I am only on Asprin at the moment and have no idea what my INR is. As you can see I am very new to this forum and have only recently been diagnosed. I am however learning fast via this fantastic forum and books on APS. I am not seeing my Rheumatologist for another couple of months but I have booked an appointment with the GP to discuss checking my INR asap.

Thanks

[GinaD]

Hi, as Lupur Support Administrator said above, many of us have had quite the journey as we go from “scary symptoms but no diagnosis” to “scary diagnosis but little informaion or proper medicatdion” to “finally! Medication, acceptance and time to move forward with the new normal.”

Another book to consider is “In the Kingdom of the Sick” which does a wonderful job of telling the autoimmune patient who constantly hears “but you dont’ look sick” how to close that communication gap between “normal” people and those of us who now live in the “kingdom of the sick” under the irrational and unfair dictates of our own “sickness” lords.

Concerning INR — this is a measure of blood density which is a component of warfarin therapy. So don't worry about your INR number if you are not on warfarin — it is a very specific medication-related test. And many on this forum have reported that aspirin works just fine at resolving symptoms. So — asprin is a good first step. And it might be enough. It may help both you and your doctor to ascess how helpful asprin is by keeping a chart of your symptoms and medications. AND, if you are wondering if this or that pain, ache or mis step is clot-related: check back in with your doctor and report the symptoms. AND, if you don’t get quick feed back, or if the symptoms are dramatic,: Get thee to an emergency consult!

THis disease is a scary diagnosis. I’m so sorry I have this. But I was diagnosed in 2001 and for the past 16 years, other then paying attention to the kinds of food I eat (an issue with warfarin) and how often I sit for hours on end without walking about or raising my feet — I still hike, bike, volunteer and live a blessed life.

You are certainly not alone. Post and ask away on this forum. We’ve been there, done that.