Vasculitis UK
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Have you experienced feelings of guilt for being "lazy" and not good for much.?

I feel that all the time; unless I MUST leave the house for a medical appt.or so as not to let down someone, I can't make myself get moving or even dressed for the day. I have even cancelled medical appointments being too fatigued to drive.

Perhaps, I don't eat enough. After a small breakfast at 7:30 am, except for drinking water, I do not eat again until 6-7 pm when my husband graciously and competently makes a good, balanced meal; usually some 90% dark chocolate for dessert. So it is almost a 12 hour fast.

My world seems to be shrinking to bed, reading, internet; I do manage the finances, keep up with my grooming as much as possible; I still can drive, but find getting in and out of car harder , and painful to put muy seatbelt on.

Until this illness started 18 mo. ago, I had succeeded at 3 different professional careers, traveling a great deal internationally, always planning, and even after retiring, kept right on going. I don't feel depressed really; just diminished.

My current medication is not adequate; 8 mg Prednisone and weekly methotrexate of 15 mg is not working out and tramadol and low dose thyroid meds . Tramadol has become taboo with the other opiates pain relievers in the US unless you are declared terminally ill.

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Hey Christophene47 you are not alone. But please don't feel guilty. It's not a good use of the limited energy you do have. I have been suffering for years and it's only since I've started treatment and it's working that I've realised how many symptoms I had that I'd normalised ergo ignored. Having some relief from these has made such a difference to my energy levels and my ability to cope. Diminished is EXACTLY the word I'll now use to describe me too. Please talk to your doctor about maybe adjusting meds. But also try and eat lunch if you can. Fuel is important to get better. If you can't put your best foot forward put a foot forward was my moto for a long time. Sending you positive vibes and hope you can get something more effective from your doctor.

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To All of you lovely souls for your kind and very insightful replies, A GREAT BIG THANK YOU. 🔆🔆🔆🔆🍎🍏🍒🍉🍏

I am curious what other Palin meds are legal and available besides prednisone and trama dbb,,bbbbb,

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Bless you; it's not laziness! Fatigue is awful and indescribable to anyone that hasn't had it. It is a symptom though and I use it as a measuring tool of how well things are going. I have categorised my tiredness as it helps me have the discussion with my consultant eg; tired means a nap makes me feel better: exhaustion means I can do it but it's a huge effort: fatigue means I couldn't move if there was a fire. My opinion is 12 hours is too long but I don't know why you're leaving it that long so I'm certainly not criticising. The body has got a fight on its hands as well as repair work to do and "a car can't run without fuel and oil" and your body is no different. I hope you feel better soon and can only promote you revisiting your consultant as you need to chat through with him, what can be adjusted to improve your quality of life. You say Pred at 8mg is not enough however, much as I understand the need to get off them, what other bloods have you had checked? Vit d/folic acid etc can support the immune system so have these been checked? Hope you get some answers soon.

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First put all your worry and concerns about being lazy out of your head ,You are Not ,Fatigue can affect anyone at any time especially with a vasculitis condition ,It hit me hard when diagnosed with it 9 years ago ,Due to what happened i felt a failure ,no good , no help to anyone and it was on my mind day and night ,I couldnt get in to a bath ,in a car ,go up stairs and a lot of other things i done daily was avoided not to show people around me I couldnt do everyday tasks .In hospital i lost all my muscle weight and went down to 10 stone i was skin and bone , from a fit person with a heavy lifting job and good physique down to someone who couldnt pick a pen up off my hospital table ,My joints hurt like hell and all swollen and i was a right mess .The doctors them medicated me with a very high dose prednisone ,tramadol ,blood thinners and other stuff they give for gastric problems the tablets cause .

At first you feel great with the steiroids but its all false your mind feels good but your body is still the same ,i started to eat and eat i was never full due to these tablets after a few months i was 19.5 stone still on the same medication ,The doctors said it was the steiroids and only then reduced them by half but my joints swelled up again ,It was too much to reduce so went back on a high dose and slowly month by month reduced them ,4 times over several years i have tried to get the steiroids down as its not easy .

I found that if there was anything i did not have to do i would not do it ,i just sat there in my chair day in day out ,I would not go out ,would not walk upstairs to bath even i just had nothing in me to do it .My swollen feet would feel like bursting if i stood to long on them my knees ,hips would feel like screwdrivers being pushed in them so i had to do some thing about my fatigue and weight ,

I started to miss meals eating 4 small bowls of cereal a day only instead of 4 big meals plus 20 treats to keep my hunger at bay ,i felt i was starving but it was in my head it was the steiroids doing there work on me ,but i continued for 2 months as i was determained to lose weight ,Then i went on a 1500Kcal food intake day i would not go over that amount so fruit ,cereal, and vegetables were my prioraty.

In the mean time i met a new doctor and i told him tramadol dont do anything for me as i was on max and it was the addiction making me take them (they are bad news) and i went on another pain killer MST but on a reduced dose ,the steiroids was down to 20mg instead of 70mg and getting reduced again over the months to 5mg

I have now lost 4 .5 stone in weight over the 2 yeasr and slowly walking , i can get in to a bath ok ,walk upstairs ok, most of the time and get in to my car without serious pain .

I now make a point of doing a list of jobs around the house to keep active and i have started doing some garden work I still get my days of i cant be bothered but they are few and far between ,And you must remember the illness and the treatment will affect you differently on a daily basis , make a plan and try to stick to it and fight the fatige like i had to .

But i had extra burdens to carry i lost my job due to not being able to carry out my duties and then lost my house as no money comming in ,then my health was lost due to this illness so i had to win one back ,as i will not give up on getting better to a degree nor must you .

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You are right, Rob; I will not give in or give up.!

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Way to sum up the tragic toll this disease has on us. Congratulations on moving forward and not giving up on yourself. You are an inspiration.

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Hi,

I know completely how you feel, I feel a burden to my family and everyone around me. I try every day to do something but it is so very hard when everything is painful as Rob- m said your feet feel like bursting and my joints from my fingers to my toes are so painful. I’m trying to reduce steroids (I also put on loads of weight) but it’s proving very hard physically. I don’t want to pop painkillers all day because they make me drowsy so I limit myself to bed time, by which time I’m in a lot of pain. But, what do you have even less of a life?! I was a very activity person running around with work and my family, but now I struggle to do a few little jobs a day, which go by the way side when feeling even more rough! The fatigue is horrible, everything I do, even a shower, is pushing back, fighting it, but it’s mentally and physically challenging!

Best advice is to try and do something, even something little just so you give yourself a little win, best wishes.

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Hi Christophene.

Welcome to the worst club ever. Am I right? I don't really have an answer for you but thought I'd offer some insight based upon my experience, which pales in comparison to others in this "club".

I've been living with MPA for nearly five years and I’m still learning to navigate the numerous obstacles of this life-changing disease. It certainly complicates life in ways mere vasci-free mortals can never comprehend. We in this group comprehend; we in this group get it.

The physical setbacks are substantial but currently, my biggest battle is emotionally, as I come to terms with the change to my body, appearance, lifestyle, and career (just to name a few). Here in the States, our medical system is woefully lacking in many ways; emotional support is no better. I think it is critical for all of us with a chronic medical condition to seek, whenever possible, whenever necessary, behavioral therapy.

I thought I was navigating the waters satisfactorily. And then my father passed away—he was 85 and it was not unexpected. But it was the proverbial tipping point. And last week I did what I should’ve done years ago: find a trained medical professional to assist me in managing the emotional aspects of this disease. My second session is in a few days and I already feel the benefit of taking charge of something I can actively cure: my mental health.

I wish you good health, Christophene. Don’t forget that all the intelligence, wit, humor, love, and compassion that your healthy-self enjoyed – they’re still there inside you. FIND THEM and if necessary, someone to assist you to FIND THEM. LOVE THEM AND YOURSELF AGAIN. You deserve no less.

Be well.

Michele

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Problem is, this sort of issue is rarely or never addressed by med professionals/drs/MDs. They seem to think and act as if that's none of their problems. They check your organs, ok, that's fine, anything else, not their problem.

You commented that you are in your 70s somewhere, right? You worked all your life. You deserve to put your feet up and rest!

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I'm past the 3rd year of diagnosis, Its been a long difficult 3 years of learning how to cope with the changes in my life. I have improved to a point so I am greatful, without the meds we wouldnt be here.

All my blood test results look good , but I still feel the disease grumbling in the background. I find it hard to describe how I feel to the Doctors. My legs feel bad after walking and I always suffer if I stand or do to much, as the vasculitis efected my joints which led to nerve damage.

I dont talk about how I feel as I'm sure no one understands and I hate the thought I'm complaing all the time, That said there are a few people I can share my feeling s with. My husband for 1 and a good friend, also this site, which has helped enormously (the symptoms are normal for many of us )

I guess you have gone off food, I lost my appetite as I felt nauseas , Even though i didnt want to eat , I made sure I did , by having smaller portions.

In the first few months of meds,my weight shot up from the high dose steroids ,but as I dont eat big portions I have lost it , although I am now adrenal insufficient soI have to take steroids, li so a plus and minus.

I eat regurarly and drink lots of water.

I have tried pushing myself, which made me ill. I now know my limitations , I do occupy myself but take lots of breaks and when I do feel reallyunwell , which is daily I lay down and completely relax.

I have found Pilates helps me. I have to take care and only do half the reps. and it is very gentle , it's a class of 6 and we all have problems , so the physio monitors us. It may be something to consider in the future.

Struggling to keep in touch with friends is another problem. I feel it is very important even though you feel like hiding away. I find it exhausting socialising (i'm not sure why),so I have rest day after a catch up with friends. I also find driving tiring , so I only make short trips. Thankfully my husband is retired so he takes over on long trips.

It takes time , but eventually I have adjusted to my new life and feel hopeful I will feel even better in the future.

Your post has lots of positive statements ie you take care in your appearance and have well balanced food. I hope you can get your meds right , that would help alot. It is trial and error , it took a few years to get mine right.

sending you lots of positive thoughts and best wishes

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Thank you, Kristy; the more I read of everyone's responses, including, to my question on how much improvement has been achieved by those on Or who have been on Rituxamab, I come away with the impression that improvements occur, a complete and long lasting return to normal is not the norm and it is better not to have very high expectations; regardless of the meds that are available to us.

I was foolishly taken in by the initial and extremely rapid response I had to Prednisone at 16mg a day. I never felt better for a few months. Even my chronic low back pain from a severe scoliosis disappeared, and it was the first time in my adult life when I had NO Pain and energy to spare. That was like getting the best candy in the world, only to lose it with tapering and the subsequent return of symptoms plus new symptoms.

As you and others have implied, the only thing to do is to grab onto those few high quality fun moments when they come, be thankful that you have what you have, rest a lot and don't feel guilty about your limitations and need for a great deal of rest; don't take on any obligations you know you cannot handle.

And find pleasure in your more insulated world.

I am glad you mentioned how driving tires you because that is not a "for granted" anymore; thank goodness our world can come to us with online services.

I think I have been in denial for the last 15 months. There is no magic bullet for this disease. If my meds can be tweaked a little, it might help, but I won't expect any miracle. And not to expect that every day will be the same, where her good or bad. There are no magic bullets for this disease.

And thank goodness for this wonderful website where all can be openly aired and discussed with respect.

Best to you.

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