Sarcoidosis - not enough care and attention given to sufferers

Hi Casey, Morag and MM,

Fatigue is a definite problem. I asked a senior registrar at the Brompton about it and his not entirely helpful reply was that it's "a particularly intractable problem". I have good and bad weeks, days and mornings/afternoons. I went to a pub quiz last night and had a lot of fun, but coughed bloody sputum over night and feel beat up today. And that's a common pattern. If I push myself I get really tired and then need time out to recover. If I don't take break, I get more and more exhausted and start catching colds, etc, with resultant trips to A&E.

It's also something people have trouble understanding and accepting. When I'm exhausted I do get a teensy bit grumpy. Various friends now know not to try and chat when I'm in that state. I don't mean to be surly but I just don't feel like socialising. However, I got really angry with one woman who I had agreed to do some work for as a favour. She was a yoga practiser who presented herself as very new-age and caring. But when I tried to explain fatigue to her, she said, in a cooing ' I'm so concerned' voice, "are you sure it's not just your imagination."? She was lucky not to get slapped! Needless to say, she's not getting her free design work.

Think its safe to say I'd have slapped the woman! I really can't stand it when people do that kind of I'm really concerned but actually I think you're talking rubbish voice. Or the talking down to you voice.

Well done on your self restraint

Yes, Di,

Ditto. I can get really grumpy too!

I even know when I am grumpy and unreasonable but cannot help myself. My family is use to it now, not necessarily happy about it when I am like that but they "deal" with it.. I do of course have better days when I am not too bad, it is just that you forget the better days when there are loads of bad ones mixed in.. You are right Di, it is difficult to explain fatigue to other people and I sometimes feel like fraud (even though I know I am most definitely not a fraud) .. There are some people on disability due to chronic fatigue syndrome ( many are obese) but most Sarcoid sufferers, unless they have more severe organ damage, do not even qualify for lower end Disability Premiums (PIP as they are known now). .. Just shows that this illness really isn't recognised that well at all.

MM

Hello all,

Sounds like we are all suffering one way or another at the moment. We will need to support each other like a row of dominoes and just hope no one knocks us over!!!!!

Ah! fatigue the blight of a lot of Sarcoid sufferers lives. Like other members I am suffering terribly with fatigue and I'm only managing to stay awake for around 4 - 6 hours a day. I feel terribly ashamed complaining too, as most of you are working or have young children to look after, whereas I am at home 24/7 and being in a wheelchair I'm not exactly burning up much energy so it's a bit of a cheek for me to complain about fatigue. That said I totally agree how easy it is to fall asleep and I have fallen out of my wheelchair several times having fallen asleep without realising it. Fatigue is totally different from just being very over-tired. You have absolutely no control over it and no amount of resting or sleeping ever gets on top of the fatigue. I just cannot function at the moment. My daughter did say she noticed that my fatigue seemed to be worse at the beginning of the year and around mid summer so I don't know if anyone else is finding certain times worse than others. My consultant was very supportive but said it was one symptom that he could do nothing for. I think the fatigue would definitely make us very grumpy. I know I always used to get grumpy when I got tired normally and this was before I had Sarcoidosis, so it's not surprising to me that I am a grumpy old so and so at times. I also think that if you have Sarcoidosis in your lungs lack of oxygen causes us to be short tempered and you can't think straight or do things as quickly as you use to etc etc.

Along with the fatigue I get nose bleeds. Not always together but recently they have been. 2 nights ago I didn't even get a warning. Just whoosh and a heavy nose bleed. I was concerned because for the first time in my life my blood pressure was high. I'm hoping to goodness that I'm not going to end up suffering from high blood pressure too.

I really feel for all fellow Sarcoid sufferers, it is so annoying that so many of the symptoms we get are not visible and therefore people appear not to believe us. My favourite annoyance is when people ask how you are and if you mention any of the (invisible) symptoms they instantly tell you they have, or have had the same symptom and then yap on about how ill they feel rather than offering any sort of verbal support. I also find that they tell you how you can't be sick because you look well!!!!! I just tell people I am fine now as I know I'm not going to get any support there. To be honest I get the same reaction from people when they

ask why I am in a wheelchair! Because they can't see a missing limb or injury, their face says it all. Actually I was recently asked by a doctor at the hospital if I was in a wheelchair because of the Sarcoidosis only it was put this way; " Surely you're not in a wheelchair because you have Sarcoidosis, are you?" Of course I'm not but it made me think how even the medical profession doesn't believe that Sarcoidosis is a big deal! It really is shocking and I wish people could have our symptoms for a day and then see how they feel.

It is little wonder that most of us feel like frauds or rather feel like people are judging us as frauds. Thank goodness we all have each other here for support.

One symptom that we haven't really spoken about is, depression. Reading between the lines of the various postings I can see that most of us are feeling different levels of depression. Whether it is due to fatigue, worry, stress or just that you feel you are beating your head against a brick wall trying to get the medical people to listen and believe you. It is not surprising we get depressed as other than this forum we don't really have anyone to help us through the blacker days especially when we are fighting to get people to even believe what we are going through. It is a terrible Catch 22 situation.

As for me, I went to the hospital on Tuesday (last week) to see the dermatologist. She was lovely and told me that she had read papers on Sarcoidosis. (I think she might have also said she had written a paper on it too but I can't remember and will have to ask her in May when I see her next. The first thing she said was how amazed she was at how sarcoidosis mimicked so closely so many other diseases. She also told me that she had trained with my Respiratory Consultant. This is really great as I am getting the best treatment from 2 doctors who actually give a damn and who both know all about Sarcoidosis. Anyway, she didn't do a dermal scrape but instead opted for a biopsy. Unfortunately because the appointment had taken so long to arrive a lot of the sarcoid areas were in varying stages of healing so she couldn't use them but she did see one area on my face that she said would do but didn't want to leave me with a scar. I told her to go for it as I was more interested in the biopsy result than whether I would scar or not. Well, OUCH! it really hurt very much and that was with the local anaesthetic. For some reason local anaesthetics rarely work on me!!! I also bled terribly but it eventually stopped after the stitch was in. I have to wait now for the results but I'm not sure if they will just wait until my appointment with the respiratory specialist to give the result to me or whether she will phone me. They always say no news is good news! I will let you all know when I get the result. To be honest I forgot to ask what else they might have been looking for as I assumed it was just Sarcoid.

The dermatologist told me that the spider veins on my ankles, shins and calves were nothing to do with Sarcoidosis even though I told her they had appeared the same time as the other symptoms. She said they were typical of someone my age! I'm not sure I agree with that as I've seen lots of women in their late 50s early 60s who don't have spider veins!!!!

Di I am surprised you didn't lay the Yoga woman out with one punch and then ask her if she got what fatigue was ha ha! It's always the people who know very little but who yap the most and make light of others suffering. They make me so angry.

Thanks for the support you give me guys. I really do appreciate it. MM I got a cover stick that did a fair job of hiding the worse areas on my face so was able to go out feeling a bit more confident, so thank you for the support and giving me the push I needed. I think it might just be the way the Glasgow people are in that they think it is alright to ask things like "What's wrong with your face?" or "Why are you in a wheelchair?" I expect it from children not from grown ups!! I just need to learn better coping skills. I tend to hide behind humour. Cracking stupid jokes about myself to detract away from how I am really feeling. It is too easy to hide oneself away and you can become isolated in a very short space of time so please be aware any of you who feel like me.

I haven't seen Linda on the forum lately, so I hope if you are reading this Linda that you are feeling okay

Best wishes to all

love and hugs,

June

Hi June

My experience in Glasgow that some of the people asking "cheeky" questions are actually concerned rather than just being nosy. Not all of them by any means. but maybe the odd one or 2.

My respiratory consultant thinks theres a link between certain times of the year and symptoms flaring up. When its sunny for a time the body produces more calcium, which can then lead to hypercalcaemia in folk with sarcoid, and lead to an increase in symptoms - the symptoms vary from person to person though so its hard to prove.

Saw the renal consultant and apparently my kidney function is back up where it was before I started showing any signs of sarcoidosis and she wants to re-instate ramipril in place of amlodipine but titrating it in at a slow rate. So things are good; still have some of the symptoms but apparently they're under control at the moment.

As for depression, I've suffered on and off for years. But sarcoidosis definitely has made it worse.

Hope everyone is looking after themselves

Morag

Thanks Morag.

Yes I guess people from different places have their own peculiarities. When I lived in China I found the people laughed inappropriately when told bad news. I remember being horrified that my work colleagues were laughing and smiling when the 9/11 news broke but thankfully one of the girls told me that it was their way of dealing with such terrible news

Here I sometimes find a child-like quality when people ask personal questions outright. I guess there is nothing wrong with it as they are probably asking what we would all like to know. Having been taught that it is 'not the done thing' to ask questions like this makes it hard to tolerate it in others, although I usually do answer the question or tell the person I'd rather not because it is too personal. Actually I had to do this with a neighbour recently when I'd said I'd had a long chat with my daughter that had altered her decision about something. My neighbour asked me what I chatted about! I have to say I was totally taken aback but just said I'd rather not say as it was between my daughter and myself and although she seemed a bit miffed at first she did appear to understand in the end.

I hadn't thought about the effects of sunshine, vitamin D and calcium as the seasons change. It stands to reason that the time of year would affect the illness.

I think the multitude of symptoms must bring people down and cause depression because just as you find one set of symptoms easing up there is another set of symptoms waiting to take their place so we are never totally symptom free unless we go into remission and then there is always the worry of the disease becoming active again.

I'm so please for you that your kidney function has improved, Morag. I so hope your kidneys continue to improve too. Poor kidney function can really make you feel so unwell with all the toxins not being filtered out of your body. It will also make fatigue even worse too, I would think.

I will keep everything crossed for your continued improvement.

Hugs,

June

Hi All,

Thank you for all your comments on fatigue. You've all certainly given me a lot to think a bout. I am also quite grumpy with it & glad I'm not alone with this

I am due to see the resp consultant at the end of the month & so hope he know all about sarcoidosis & takes my symptoms seriously. I do worry that I'm expecting him to perform miracles & give me a wonder drug that will kick start my energy levels as judging by what you have all said the fatigue is here to stay

Almost feels like you have all had to battle with medical professionals to get recognition for the condition. It shouldn't be this hard. I imagine this can also contribute to the depression

Di what a rude woman. Well done for not slapping her. I would have been very annoyed as well

Sorry to hear you have been going through such a tough time June and ignorant people certainly won't help. If you come across anymore of these people just ignore them they are not worth the little energy you have .

I have read how extreme weather conditions can make symptoms worse & how it is advised for sarcoid sufferers to cover up & wear dark glasses in the sun.

Glad to hear kidney function have improved Morag

Has anyone has probs with pain around & in their ears? I'm hoping it's just an ear infection but feel I should always consider a sarcoid link as most medical professional probably wouldn't ( though know it will not always be the cause of symptoms)

Looking after yourselves

Cassy x

Hi MM,

I'm feeling exactly like you describe. I hate how I'm even too tired to follow a conversation & worry I come across as being rude or not interested. I also eat as healthy as poss. Will look into those recommended diets. Let me know if you find out the title of that book you are considering looking at though not sure I'll ever get to the end of it as it's a running joke how long it takes me to read a book these days due to the fatigue.

Am I right in thinking you mentioned you had young children as well? Reason I ask is I get the impression that like me you seem to suffer worse from fatigue & joint aches rather than the other symptoms and wondered if it has anything to do with out lifestyle ? Prob just a coincidence

Cassy x

Hi Cassy, You are right about covering up for the sun but not only for Sarcoid but if you are on steroids too because they cause you to be photo sensitive to the sun and also cause hyper-sensitive skin too. Skin becomes very thin on steroids and can damage easily.

The chronic joint pain and chronic fatigue affects older people too not just the ones with small children although I get your meaning of it affecting more young people with young families to care for. I'm sure it must be even worse when you are trying to run after small children and your joints are so sore. I was put on Oxychloroquine for joint pain and also in combination with steroids it acts as an immune suppressant. It took me a good month to notice the difference but the oxychloroquine certainly eased my joints as before I could hardly move without severe pain. It also eased my chronic carpal tunnel syndrome, so maybe worth chatting to your consultant about.

You haven't really had the time to get over having your baby let alone having sarcoid so no wonder you are so exhausted.

Unfortunately there are no drugs to ease the fatigue and you can only try to grab rests as often as you can. I really admire anyone who is trying to cope with young children while fighting Sarcoidosis. Is there someone who would share your burden so you can get more rest? Even a couple of hours during the day might help you.

Are you breast feeding at the moment? I only ask as you won't be able to if they prescribe you any medication (although I'm sure you know that already)

I hope you are able to get some help from somewhere.

June

Hi June,

I hadn't realised that steroids cause you to be photo sensitive will bear that in mind.

I will certainly discuss the possibility of having a combination of oxychloroquine with steroids. Thanks for the suggestion. I'm willing to try anything that might help.

With regards to joint pain & fatigue I'm aware that they affect most sarcoid sufferers. I just wondering if these symptoms were more prominent for certain sufferers that tend to be tired out/ constantly on the go i.e with young families and if that maybe why I'm suffering from this much more than the other symptoms. As consultant seems to be surprised that due to severity of joint pain & fatigue he would have expected my lungs to be worse. I think that's why he wants to recheck lung function & chest X-ray. I know there isn't a known case for the condition it was just a thought

My son is 16 months so I've finished with the breast feeding am so glad I managed to keep going with it though I was exhausted like most new mums. Now having the recent diagnosis does explain a lot about the struggles during that time. I do have people that I can ask to help but sometimes that is easier said then done. I just don't want to give in.

Thanks you for all your valuable advice June

Well done you Cassy for not giving in but now and again when things are really a struggle it's okay to get help. It's better to give in for a few days than make yourself worse for a week if you get my meaning. Tell your doctor that Sarcoidosis isn't selective in what or how much it attacks and just because your lungs aren't as affected as your joints doesn't mean that it isn't the work of Sarcoidosis. I think this is why it is such a difficult disease to diagnose. When doctors can't make a clear diagnoses via biopsy of the lungs they then believe it is something else. Your hormones will still be readjusting following the birth of your baby so this too could be adding to the fatigue and pain you are getting with the Sarcoidosis, so you are probably right that these symptoms are more prevalent in women who have babies. When you think what women go through who have hormonal imbalance, pain, fatigue, temperamental mood swings, little wonder doctors get confused as to what is causing the problem. Sarcoidosis is such a mimicker of everything.

Well done for being able to breast feed as long as you did. A super start for your baby. I think mums who breast feed get more tired more easily too so that coupled with everything else, it's no wonder you are so exhausted. I hope it eases off for you soon. I really do feel sorry for you. I have dreadful fatigue but I am lucky as I don't have anyone relying on me so I can sleep whenever I want. I honestly don't know what I would do if I had young children to look after. Maybe it would force me to battle on as you are doing. It took me until 11.00am today to get up and now I am desperate to sleep again.

Anyway I hope your doctor can help. Keep your chin up you're doing great honestly.

Hugs,

June

Hi Cassy.

I've got 2 teenagers. So I can have a long lie in at the weekends but still have to do housework, washings, cooking, help with homework, school stuff etc. They do help now and again but they are both in secondary school so busy with their studying too.

I found some stuff from online, cannot locate the book tho. Worth checking out the Norwegian Anti-inflammatory diet and/ or Alkalizing diet

Copied some diet advice for you, I have tried some but should really do it properly,

Eat plenty of extra virgin olive oil - it's rich in anti-inflammatory and painkilling ingredients. Make sure that it's cold pressed/extra virgin. Omega 3 is great too.

Good foods:

All vegetables (salads, baked, wok, stew etc)

Berries (without sugar)

All kinds of fruit

Herbs, spices

70% cocoa

oily fish, particularly salmon

Lean fish

Extra virgin olive oil

Raw nuts, seeds and almonds

Chicken, turkey

Beef, pork chops, roast beef, ham

Eggs

Cottage cheese

Shrimps and shell fish

Ok to eat:

Beans, peas, lentils

Whole seeds

Soy flakes

Sour milk (not milk that has gone bad! but the one that's good for you)

Sugar free Yoghurt

Butter

Yellow cheeses

Some cream

Boiled potatoes

Brown rice, wild rice

Fresh Juice made from fruit and berries

Fructose, some honey, splenda (artificial sweetner without aspartam)

Things to avoid/eat less of:

Sugar

Soda, iced tea, soft drinks, juice with sugar

Candy (all kinds)

Cookies and store bought cakes

Fries, mashed potatoes (from a bag), salty snacks

Deep fried food

Baguettes, chiabatta, fine bread

Pizza, pita, pancakes

Sausages

All kinds of shortening, also in liquids

Regular soy oil, sun flower oil, corn oil

Caviar, mayo, salads with mayo

Yoghurt to drink, sugared yoghurt

Chocolate milk and other sweetened milk

white Pasta and white rice

Brown cheese, jam, chocolate spread

Beer, non-alcohol beer, light beer, sweet drinks, liquer and spirits

Eat 4 meals every day. Introduce small meals in between if it's more than 4 hours between meals.

Drink plenty of water. About 2l every day .Homemade food is better for you than processed food.

Good bowel movements will help your immune system, so plenty of fiber is the key

Worth a try!

Love, MM

Hi All,

I am putting in this link to the UK Sarcoidosis Association just in case some of you have not seen the web site. It is full of information so should be useful for anyone who has been newly diagnosed with Sarcoidosis and has a lot of questions they want answered. I know most of you already know about it but I'd hate to think any of the members here didn't know about it or felt embarrassed to ask so here is the link

http://www.sa-uk.org/What%20is%20Sarcoidosis.htm

Hi all,

It seems I have missed a lot of posts. For some reason I haven't been getting the email notification

I have skimmed through all the posts as there is so many since I was last logged in

I saw my consultant today , to firstly getting a ticking off for not going to my GP to get antibiotics last month

when I had a awful cough for three weeks

I had blood tests and chest X-ray last week prior to my appointment today

There is concerns over the levels of my liver function and ESR

IT APPEARS IT IS NOW TIME FOR ME TO GO ON MEDICATION......

She wasn't too keen to start steroids initially but suggests HYDROXYCHLOROQUINE Tablets

Do any of you have any knowledge of this medication???

Due to my eyesight being affected through the initial TB medication along with the Sarcoidosis I was under the eye hospital but was discharged last month due to not being able to help my condition as it would never get better.......but with this hydro medication it CANNOT be prescribed until I have 'permission' from my eye consultant ......which I do not actually have anymore...hey ho

So I have to contact the eye hospital in hope that i can get a verdict

If they agree then I have to go to my GP next week to commence the medication

If I go on this I will need blood tests every month

Failing this I have to consult my sarcoidosis consultant to decide another medication

It appears as I discovered today on my notes from the rheumatologist this is what they had in mind a few months ago but was never initiated........as that visit I was told that I may need a five day steroid boost depending on blood results...needless to say I never had a call so assumed all ok and this boost wasn't necessary!!!

This all came as a bit of a shock to me as I had been feeling quite well apart from the past month along with the cough and such a busy time with various things going on in my life.

So any information at all on this medication will be a great help

Hope you are all keeping as well as can be

Linda x

Hi Fitzegee and a belated welcome

I just wanted to say that when I went in for an overnight stay for the mediastinoscopy I was nervous as apart

from having my children I had never been in hospital. This was a follow up to a previous EBUS , however I

was told that this would be done by three keyhole incisions but on actually having it done it was a 2-3" cut, but it was done within a crease of my neck and it is hardly noticeable at all now, this was done April 2013

So pleased be rest assured it is not an unsightly scar at all

Hope this helps

Linda