Churg strauss

[Popeye123]

Hi everyone I've been diagnosed with churg strauss in the last three months I've not got much patience but I'm finding I'm tired washed out no energy at all sometimes and my legs feel like jelly which is really annoying anything I can do to make it better should I try and exercise or walk through it regards Anthony

[Skipper55]

l feel for you a really do its the most frustratimg disease one can get as very few Doctors know very little about it and its very lonely weakness comes and goes pain comes and goes asthma .try walking or running in a warm salt water pool and diet remove all sugar in any form even iin carbs breads etc andjust drink pure water or black tea . turkey lamb fish grilled no dairy . just lemon

avacodoes sweet potatoes broccali all organic and take the anti immflam curcummin tablkets 2 or 3 a day sad to say you need to adjust your life to what the disease is doing you will have good days emjoy them and work out how they occur. all the best you are not alone . we are all in this together helping and sharing

[Popeye123 in reply to Skipper55]

Hi skipper thanks for the advice yes I did hear about cummin tablets and only organic food as it helped you at all how is the tired mess lethargy or is that not a problem for you regards Anthony

[Skipper55 in reply to Popeye123]

sorry i have not got back to you but yes i spend many days in bed either due to weakness or pain or both. it is dicficult to cope with i watch people get drunk etc and they are in far better shape than me especially energy wise and after a while you do get a bit jeolous and very energenic people i want what they have 5 years on you just get weary of the whole package

[Popeye123 in reply to Skipper55]

Hi skipper, can I ask if you are in remmision? Are you on medication? If so what meds? Thanks

[Skipper55 in reply to Popeye123]

No I am definitely not I am going semi okay , in overall terms I am 40% of a normal person in health at 60 years of age . I cannot get under 12mg of prednisone . anti blood clotting , anti gout , 4 orn5 asthma puffers 100micro grams of fentenil patch a morphein type thing , 120 e done tablets every 6 to 8 weeks and 5 injections of morphein every 3 to 5 weeks for severe pain , plus tons of different vitamins D E A calcium , pariet Zantac , and pills of other stuff , now I strongly suggest to you that you get your head Specialist to prepare for you a letter which defines your condition and treatment protocol , plus list of drugs you are on this includes a definition of CSS and normally is the expo pascals in the blood is up 50 mg of prednisone . Etc , the most frustrating thing is if you are court out of area no one knows what Churg strauss is and how to treat it and that includes level 1 hospitals . It may save your life having it prepared and have it on your person at all times. Weakness and pain just destroys your life so Meds and diet and curcumin and stay away from sick people and going into hospitals is not good .as your immune system is very weak

[Hidden]

Hi Anthony,

What treatment are you on?

[Popeye123 in reply to Hidden]

20mg steroids from 60mg . I was on 150mg azeriphine but now it has effected my liver so the dr has stopped them totally. I'm on blood thinners , antibiotics , calcium tabs and 2 treatments of rutiximab waiting for the 6 month one in march

[Katie18]

Hi Popeye I have had churg Strauss for 5 years now & I find the tiredness and numb legs & feet come and go depending on my medication and state of health.

I've found exercise helps me, Aqua aerobics, swimming, exercises in water & Pilates help. I also find shiatsu massage and other massages help. Meditation and. Relaxation tapes help me with the tiredness & I take power naps at weekends. Hopefully you will experiment and find what works for you but you do need to be patient and listen to your body best wishes

[Popeye123 in reply to Katie18]

Hi Katie sorry to hear you have got this at such a young age makes me feel like I should not be complaing please forgive me I suppose because I've had it only for 3 months from diagnosis !! Not sure how long I've had in my body I'm not use to the lethargy I can only describe like my battery's running out something I've not got is patience something my wife tells me I need to get anyway thanks for the reply godbless Anthony

[Katie18]

Hi Popeye I can well understand you complaining you have nothing to feel sorry about. The disease does take a bit of adjusting to & can affect people in many different ways. This forum & Vasculitis U.K. Have helped me enormously so do use them. Hope you have a good Christmas

[cairneyh1]

Hi Popeye

I was diagnosed with CSS six months ago. After five weeks in hospital and another six weeks inactivity due to having an ICD fitted because my heart was damaged I started to exercise slowly. Went to gym 3 times a week using the lightest weights possible. Now almost at weights I used before being ill. Started walking small distances and can now walk2:jog1 for upto 5 miles. CSS damaged median nerve in my right arm and thought my time playing tennis and golf was finished. However , my grip is improving slowly and I am able to play both sports again. I am nowhere near the level I was before but at least I am playing and enjoying them. I get tired after activities and need to rest but determined to keep doing them. I am fairly new to this forum , and don’t know if my type of recovery is typical, and I haven’t seen too much info on CSS but tips on diet from Skipper look interesting. We’re these recommended by a consultant Skipper?

Good luck for the future Popeye. Your wife is giving good advice about being patient.

Harry

[Popeye123 in reply to cairneyh1]

Hi Harry , when after you got diagnosed did you start exercising again? Because the doctors are telling me not to do anything until march which will be 6 months from my diagnoses! I have always been into training, running and going to the gym daily so it's a big lifestyle change for me and it is getting me down, I also have zero energy and my legs are like jelly

[cairneyh1 in reply to Popeye123]

Hi Anthony

Before I start I just want to say that my consultant has said that all cases of vasculitis are very individual and no two cases are the same.

It was probably about 3 months after diagnosis that I started to exercise. Doctors suggested that I only walk short distances to start with. Like you I was very fit before diagnosis and was very frustrated with my inactivity. I also started going to the gym 3 alternate mornings a week and using the smallest weights possible. 5kg on most machines for arms legs and torso. I was advised by physiotherapist not to use free standing weights. It was more like stretching than strengthening that I was doing. I started to increase my walking each week. Physio suggested increasing by 10% each week. I find jogging very tiring but tend to walk 0.2 of a mile then jog 0.1. I have managed over 5 miles using this method. I have also gradually increased weight at gym and now using 30kg on the machines. It is my legs that tire more than other parts of my body. I would suggest listening to your own body as you start to exercise. I have recently been able to play tennis - my legs were like rubber the first few times that I tried to sprint!! I have also walked 18 holes of golf a few times. After all of these activities I am very tired and feel like lying down to rest. I have recently returned to work but caught a bug and only exercised today for the first time in 10days. I am trying hard to take it easy so that I don’t have a relapse. Like you I find this very difficult but don’t want to feel unwell and end up in hospital again. Good luck with your recovery and get back in Touch if I can help in future.

Harry

[marylou61]

Hi Anthony (from a very humid day in Australia), I was diagnosed 12 years ago . My feelings is to be very circumspect about the exercising, give yourself a break this Christmas and rest up and drop the walking. Check out You Tube for passive exercise demonstrations, Hatha Yoga demo. I would be trying to get on top of the asthma. My concern is that the heaviness in the legs is not a precursor to peripheral nerve involvement - which I have had. Take care Mary Lou.

[Popeye123 in reply to marylou61]

Hi Mary Lou ,

thanks for your reply! Are you in remmision? What treatments did you have and have you had many flare ups in your 12 year period.

[slam999]

I have Wegners same problems but keep on meds all will lead to remission. It’s been 7 years for me. It took 5 months for a diagnosis by my eye doctor. Chin up