Sarcoidosis - not enough care and attention given to sufferers

Great new on the blood results Morag

Just wondered if anyone had any tips for dealing with the fatigue . suffering quite a bit at the moment. I am trying to do as much as possible, perhaps too much, doing light running even when tired as read that exercise is supposed to help with fatigue, eating & drinking more healthier. Is it just a case that I need to be resting much more while the condition is active which includes not doing any running?

I'm just trying to not let the condition rule my life but this fatigue is sooo hard to deal with & I wonder if by doing all I'm doing it's actually detrimental.

Cassy

Hi Cassy

Id say its probably about trying to find a balance. I'm like you, when I can I don't let sarcoidosis rule my life and what I do. But there are some days when you just have to say Nope I need a break and rest. I don't think you'd do yourself any harm by doing everything possible but at the the same time listen to what your body is saying and don't push harder than it wants you to.

Today is one of those days for me, I've just finished tidying up a load of craft stuff and putting it into a set of storage drawers and now I need a rest even though it wasn't really that hard a job.

Look after yourself

Morag

Hi Casey,

I also suffer from fatigue. I recently did a lung rehabilitation course and the physios pointed out that keeping as fit as you can helps when you are feeling bad. I am not working at present but I am doing some art classes and find that two to three hours exhausts me. But I have found that, since I've been exercising more, I do recover more quickly. So do keep trying, but don't punish yourself! As Morag said, you have to listen to your body and find a balance between sofa surfing and getting to the point where you ache with tiredness.

Di

Thank you both for your advice. Xx

Hi All and welcome Fitzgee to our forum,

Cassy, I myself find the fatigue the hardest to deal with. Even when I have a good sleep both of the weekend days I am still tired. I can feel like wanting to do absolutely nothing and smallest of efforts can leave me without any energy .. I just try to get on as much as I am able to. I find that nice long walk, weather permitting always helps, I also find that gentle pilates- yoga type exercise prior to bed time does wonders too. Hoping to take up actual yoga classes, funnily enough never quite feel up for it but it is always that first step .. I have been off from work since Friday due to fatigue and inability to sleep at nights due to sore joints and just not felt to do anything. It is not like me, as I never really take time off work and usually just get on with it.

To Fitzgee, my Sarcoid was discovered from lung biopsy and bronchoscopy , they took few samples from lung and fluid , not sure what but it showed sarcoid .. Now a year and 5 months on since my first proper flare up of the symptoms, my lungs and breathing have got much better, cannot say the same about my lymphnodes and joints tho.. but hey, it's not the worst situation to be in and hopefully will get better over the time.. My lungs too don't show any scarring and my sarcoid did not start in lungs ( not that I know of). Although chronic, I hope to be able to cope with it as well as possible,

Wishing you all well and spring is not too far away, hopefully it will bring us all a lot of much needed new energy

Love, MM

Hi MM,

Sorry to hear that you struggling at the moment. Our sarcoidosis sound very similar as in the symptoms that we struggle most with. I can totally relate to the joints pain & fatigue it's so hard to sleep. I occasionally find elevating my knees with a pillow if sleeping on my back so sleeping with a pillow between my knees/ ankles if on my side helps.

Hope you have more energy very soon xx

Hi Cassy,

Thank you for that. I took your advice and slept almost 6 hours without waking! Back to work today. See how it goes but I feel much better. Fatigue is still there but physically I feel at least 10 years younger than I did yesterday Solid sleep does make wonders x

I think some energy will return with some light and sunshine. In Scotland there have only be very few sunny days this year and especially now it seems to affect me most.

Love

MM

Hi All,

Di1694 started a new post about a film company wanting Sarcoisosis sufferers for some documentary so in case the members on here have missed the post I have copied it which I hope is okay. It reads;

I have heard from Heather Walker of SILA, the Sarcoidosis charity, that a TV company are looking for people with Sarcoidosis to take part in a new series on lesser known illnesses, what it's like living with them and what treatment or care is available. If anyone would like to know more please contact SILA http://sarcoidosisuk.org

The charity is based at King's College Hospital, London. It funds research into Sarcoidosis and holds meetings for sufferers around the country.

As most of you guys are from England (I think) I thought you might be interested. As Morag and I are from Scotland there is a good possibility they wouldn't want to hear from us given that certain things in the NHS are different and the charity is possibly only pertaining to England but there again they might welcome Scottish sufferers with open arms as it does say sufferers from around the country.

I doubt I will get involved as I am only awake for about 6 hours a day now, my rash on my face is worse and despite barely eating the steroids have pumped my weight up to 12.5 stone! I've never been this heavy in my entire life, it's terrible! So, vain it may be, but I'm not even going outside any more therefore I'd be useless for their medi-docu.

Thank you June

I am Scotland too, a bit far for me to go

Thats a shame that you are not feeling good.. 12.5 st is not that bad though.. and it is a catch 22.. if you are not going out then weight just mountains up

Take care and I hope you are feeling better soon

MM

Thank you MM for the words of encouragement. Unfortunately I'm in a wheelchair 24/7 so no exercise there. Perhaps I should join the wheelchair netball team ha ha! I wouldn't complain quite so much about the weight if I was taller. I'm only 4'11 1/2" and because of my sitting all the time the weight is round my middle (like Jabba the Hutt) so not only am I embarrassed about my weight but it also causes even more breathlessness with the 'podge' pushing up on my diaphragm! I am trying to diet at the moment but the steroids are making it almost impossible. Oh well never say die as they say. I will keep trying.

I think the weather is again making my joints very sore. I was trying to get some new baby things knitted as a friend of my daughter's had a little boy last week. My joints were really painful but I did manage to make a jacket, mitts and bootees, plus a pram blanket (do people still use prams?) but I am having to stop at that. I stupidly missed a couple of days of my medication and wow do I know it. I had left my tablets to one side until I had eaten as they make me feel so sick if I haven't eaten and then forgot about them. Honestly I must be going senile as I did it 3 days on the trot. By the time I had noticed I hadn't taken them it was too late in the day so it serves me right to be in pain.

It's a shame we couldn't all contribute to the Sarcoidosis program as everyone on this forum gives excellent support and advice to everyone else not to say I think sharing the cycling of symptoms is invaluable especially for people who are just newly diagnosed. I think the program might discover that Sarcoidosis is not as rare as they think, just misdiagnosed. It's a shame that it needs a charity to provide money for research. Although this is true of every disease I guess and more so now that the Government is cutting back on NHS spending. It's also strange that all of a sudden Sarcoidosis is getting some publicity too as even here there are members who have been suffering for years. It's almost like the forgotten illness.

Hi June,

I go to a Tai Chi class that is organised by Arthritis Care (another charity) which is partial done in chairs, and there is one very elderly lady, at least in her eighties and with a badly bent spine, who does the entire class sitting. I'm sure that there has to be an equivalent in Scotland. I did try an 'ordinary' Tai Chi class, but couldn't keep up!

I may not have explained myself very well about the program. The TV company approached SILA to ask them to try and find people to take part, otherwise they're not involved. But I agree it's frustrating that we have raise the money for research via donations.

Thank you Di. I used to do Tai Chi and Kung Fu when I lived in China. They are really good exercises. They really stretch you out and discipline you. I could even do the splits!

Unfortunately when my health started going downhill in 2006 I could no longer do the exercises. I'm really stuck getting to and from places now but there is nothing stopping me from doing my own exercises at home I guess. I'm not very good at going anywhere because I am so embarrassed at how I look now. (I don't even recognise myself in the mirror any more). When I met my youngest granddaughter for the first tie last year she couldn't understand how the Granny in the photo wasn't the Granny sitting in the chair. It said it all. I hope if I ever get off these steroids I will eventually return to normal but with my respiratory consultant saying he's looking at treatment over 10 years I guess it's not happening any time soon!

I really shouldn't moan. I have a friend who has Lymphoma and her legs are massive with fluid. She will have it for the rest of her life so I have no right to complain at all. Like they say; there is always someone worse off than yourself...so true

Hi all,

Just a query about how fatigue is affecting the long term sufferers. As I've just recently been diagnosed I'm still trying to get my head around it all & knowing what to expect will hopefully help & help me make some important decisions.

If not taking medication do people find that the fatigues present generally all the time or does it only appear when the condition is active?

Does the length of periods of when the disease is active vary ? As in can it be a few days or does it tend to be months in between stages?

Reason I ask is I feel like I have had fatigue for years & after my pregnancy this year it has been so much worse to the point of suffering 24 hours a day with days where I feel so sick as I'm so tired. Could that be that I'm not resting enough?

Do people find that the severity of the fatigue can vary daily as well?

Have people found medication has helped with it?

If the condition reoccurs have people found that the condition is worse each time or again has it varied. I do think I have had this condition for years but can't really answer this question as my pregnancy exacerbated the condition

Hi Cassy

I'm probably not the best person to answer all your questions as I wouldn't say I'm a long-term or even a particularly badly affected sarcoidosis sufferer.

I find the fatigue varies from day to day and indeed within the day. Admittedly I'm never too sure how much of mine is sarcoidosis related fatigue and how much is just that I'm trying to do too much generally. Steroids have helped a bit but I still have days when I really don't feel like doing anything as I'm just so exhausted and I definitely get tired quicker than I used to.

Aw ra best

Morag

Hi All,

Cassy, I am always tiered, but the exhaustion is beyond any normal standards.. I do have trouble sleeping many nights, so sometimes it is like catch 22.. tired but unable to sleep, so no wonder .. However even the times I have a good sleep, some weekends, holidays etc I still feel tired.. I do walk every day in fresh air around 30-60 minutes, I do some stretching before going to bed and some relaxing exercise, I eat pretty well, loads of fruit, plenty of water, healthy meals but regardless, I still have no energy.. I haven't noticed a link between taken or not taken medication, especially at the start of my symptoms in 2012, when I was not on meds at all, I was still really tired. The only time I can think of feeling better was when I had my steroid injection last year in Feb, I couldn't sleep but I was full of energy, but that lasted less than a month.. As you know fatigue is different than any other tiredness imaginable. I cannot think straight, dont understand what I am readying, finding it hard to follow a conversation, feel physically sick most days, could fall a sleep standing up ( I have standing up on the train), could pretty much just close my eyes and sleep anywhere.. There is a lot of recommendations on line for special Sarcoid diets. Eat yourself healthy kind of a think, what not to eat etc, the feed back online is pretty powerful and sufferers do say that eating how you are meant to does help a great deal. I believe there is even a very good book out by an American author (former sarcoid sufferer). I am still working around the idea of trying it.. I suppose it cannot harm and must have some truth in it..

June- hope you are feeling a bit better, now that the Sun is out and a lot brighter. Even going out in fresh air is helping to burn calories and perhaps give you the boost you need. Don't worry what other people think of your appearance. If they don't like the way you look that is their problem and not yours. They don't have to live your life and feel what you feel so there is nothing they have a right to say about it.

Love to you all

MM