Sarcoidosis - not enough care and attention given to sufferers

Wilting is not the word for it and I'm in Scotland where its supposedly cooler. Glad to hear someone is trying to find out what's going on with your adrenal glands.

Yes my ankle swelling is painful as the result of the heat

Interesting re your test please keep us updated on the outcome

I'm really keen to hear how you get on too Gustav. I have all the things that point to Cushing's Syndrome right down to the placement of fat around my middle and face (classic moonface). I really should discuss going for the test myself. The funny thing is that my consultant mentioned to me at my last appointment how he could see the change in my face. I just didn't pick up on what he was saying as I thought he was just saying you have classic moonface from the steroids.

I'm such an idiot because I knew the cortisol was being over produced by the adrenal gland because it was causing the pain in my feet to be even worse so I should have done something about it then. As you all know I had surgery on both feet a few years ago and due to a careless surgeon, nerves to both feet were irreparably damaged and I also now suffer from CRPS (Complex Regional Pain Syndrome), all of which has left me wheelchair bound. Too much cortisol and damaged nerves don't go well together.

Cortisol is produced by the adrenal cortex. Cortisol is essential for a number of things in the body such as maintaining blood pressure, keeping our immune system working properly, keeping our insulin regulated so we don't get diabetes. Cortisol is one of the hormones that is secreted when we get stressed out too. You guys know how I'm always going on about drink plenty water and don't let yourselves become stressed right? well this is why. So if the steroids are causing the adrenal glands to produce too much cortisol and you are constantly stressed which is making the adrenals produce more cortisol then it is just a hop, skip and jump for our bodies to end up with far too much cortisol and for us to start experiencing more health problems.

You can experience depression, digestive upsets including diarrhoea or constipation, fatigue, anxiety (the adrenal are part of the flight or fight mechanism), headaches and backaches, raised blood pressure, disruptive sleep pattern, weight gain, food cravings (usually junk food) and you are more suseptible to infections.

Everyone who is on long term medication should be getting their bloods checked on a regular basis. Don't forget you can ask for your bloods to be checked and you don't have to wait for your GP to suggest it. If you do rely on your GP then he might chose saving money over doing regular tests so it's important to care for yourself.

Too much cortisol has also been shown to kill cells in the hippocampus of the brain. The hippocampus is responsible for maintaining episodic memory. Episodic memory is the memory of times, places and events for example - you go shopping and you remember where you parked your car. Not only that but you recollect what time you parked it. (the time was 2.00pm, the place was the mall and the event was shopping). If your cortisol were to kill these brain cells you could end up standing in the middle of the road not knowing how, why who. where or when! etc etc. You get the picture - very frightening! so it is clear we need to be very careful when it comes to medication and its long term effect on the body.

Like all of you I am living with the fan surgically attached to me at the moment! The sweating caused by the sarcoidosis was bad enough but one of the side effects of me taking oxycodone for my pain is also perfuse sweating. I feel like Im living in a shower ha ha!

I feel sorry for the athletes as the Commonwealth games start today.

Morag and I are used to Scottish summers - rain, wind and the odd hail shower ha ha!

Keep cool people

hugs

June xxx 

Snow is forecast for  the middle of the athletics - ;-) 

Actually I was in Glasgow today for a farewell do for a friend moving to a new job in Edinburgh. Glasgow is roasting and mobbed so guess the commonwealth games are doing a good job of attracting tourists.

Just read someone in these posts mentioning side effects of bp medication including swollen ankles. Amlodipine is the most common culprit for that. I'm on a low dose of it but it caused my feet to swell so much I got forusemide added to counteract its side effects. So might be worth asking about that. Typical though, they find a drug that works really well for me (ramipril) then I have to stop it because of sarcoid!

Ice lolly time now I think

Hi Morag,

yes that was me re swollen ankles and BP medication, I am on Amlodipine,

Many thanks for this info I will definiteley follow that up when I next see my GP.

Enjoy your lolly x

I take Amlodipine and have the same side-effects. I was informed of these by my GP. 

Your paragraph about depression, brought it all flooding back to me and how things snowballed at work until I completely fell apart. All those symptoms and no sleep meant meltdown for me.

Whoever finds a cure for this will make us all very happy!

I honestly think depression comes in to most illnesses but we are still frightened to express how we feel because we think people will judge us. The one thing I discovered was that once the floodgate is opened it is nigh on impossible to close it again, which is perhaps not a bad thing because it shows that there is more going on than just how we are feeling at that moment in time. It's terrible that in this day and age there is still a stigma attached to admitting you have a mental health problem.

I go and see a clinical psychologist every fortnight but it took many months to arrange because there are just not enough clinicians in the community.

When I first became ill I could feel myself 'unwrapping' mentally. Not able to work, unpaid bills etc added to the stress of being physically ill. Then other issues that I hadn't dealt with surfaced and I thought I was going crazy. It is amazing how quickly we fall apart but more amazing how long it takes to heal.

The first thing to realise is that you are not crazy you are just human and with life comes a deluge of problems. When we are fighting fit we can usually deal with them but when we are already unwell it seems to allow mental issues to break through.

In a sense I am lucky that I finally agreed to speak to a psychologist because I had not realised how many issues I had pushed out of sight.

Oops I pushed the post button before I was finished.

I don't know if there is an all fire cure but there is certainly help out there. The worst thing is to brush it under the carpet or to tell yourself to pull your big girl pants up and get on with it. Talking with a professional definitely helps and it is important to be honest too. I was really shocked at how close to the edge I was walking. I was also shocked to discover how many things in the past were affecting me now.

When things were at their worst I would say that I felt like a dung beetle pushing a huge lump of dung up a very long, high hill. Now I feel like someone has lightened the load and I'm getting there. I just wish there was more help for people because the waiting list is appallingly long and too many people are slipping through the net. You don't have to act crazy to have a mental heath problem and talking about things definitely helps. Gone are the days when we would think, get the physical body mended and the mental health will take care of itself because you can really have one without the other.

Keep your chin up guys

hugs,

June xxx

 

Unfortunately it's true of a lot of BP meds. I'm on Atenolol which is also a beta-blocker to help control my arrythmias and lower B/P and same side effects, swollen hands, feet and ankles. Diuretic are often coupled with B/P meds but then you have the added problem of checking that the patient doesn't become hypokalemic (low potassium) but you can get potassium sparing diuretics. Yet another tablet to swallow!!!!

It's horrifying to think how many tablets we take not to treat a disease but to counteract the side effects of another drug!!!!

 

I live over in the East end of Glasgow so I'm dreading venturing out! You were very brave going into the city Morag!

Also noticed that Mo is not running due to illness. There goes a medal for us then!

I have been eating ice lollies to help stop the sweats and to keep my dry mouth moist but today I realised I've made my mouth terribly sore and I can only think it is due to the lollies. Maybe caused ice burn so don't be like me and eat too many of them ha ha! Seriously it is very sore. Maybe the undiluted juice they put in the lollies was too much for my delicate gob ha ha!

Mo not running isn't an issue for me, he's not in the Scotland team after all! Commonwealth Games ceremony last night was fantastic as far as I was concerned but not sure how many people outside of the West of Scotland would get a lot of it; it was a great example of us poking fun at ourselves but still celebrating.

But......

ears: I've had otitis externa in the past, causes dry itchy ears with flaky skin. Sounding familiar? If it gets really bad the doctors can prescribe ear drops with antibacterial in them since those symptoms are often precipitated by a very minor infection.

eyes: dry and scratchy. I have that every summer, nothing to do with sarcoid and everything to do with hayfever! Best treatment is something like Optrex eye drops which are basically just a moisturising drop

Recurrent styes or mouth ulcers: I'd say consult a doctor because there's something going on that needs medical treatment. 

All joking aside, June, it is possible to get a sore mouth from too much undiluted fruit juice. After all most juices contain acid so it stands to reason. Is this a good excuse for mixing your lolly flavours - fruit juice lolly 1 time, icecream lolly the next? 

 

Thank you again June, hind site is a wonderful thing! Unfortunately all this wonderful information comes too late but helps for future apts etc. My week is not going well but your pearls of wisdom have helped to sooth frayed edges!

Shamefully I'm not following the commonwealth games. I was told I could apply be a volunteer at the games especially as I was disabled. It's nice to be considered but the fact that being in a wheelchair makes me more likely to be chosen than an abled bodied person actually bugs me a bit because I would prefer to be chosen because I am considered good at the job. I don't want to be chosen so I can wave an 'invisible flag' on behalf of the disabled citizens. Isn't that what's meant by positive discrimination? This was from the GDA (Glasgow Disability Alliance) so I was a bit surprised. I couldn't have sat out in the sun anyway. I think today must have been the hotest in a very long time. I ended up having to wait over an hour for my prescriptions and half of them weren't even available and I have to go back tomorrow! It's a tiny Boots chemist which is constantly complained about because it takes them so long.

Ha ha unfortunately I am totally hooked on ice lollies so don't need any persuasion. I am totally hooked on FAB lollies I'm ashamed to say.

You are absolutely right that there is something going on in my mouth and it's not a party! . I do have sarcoid on the palate and gums. When my dentist saw it over 2 years ago before I was diagnosed I remember how worried he was because he'd never seen anything like it. At that time they were still thinking along the lines of lung cancer and he worried that if they were right this was also cancer. Thank God it wasn't!

I've got thrush I think from the seretide inhaler. I do follow the instructions to rinse my mouth thoroughly after using the seretide but I think it still causes damage.

Of course I give it insult after injury by eating ice lollies. My mouth is terribly sore right now actually and I am quaking in my boots as I am having dental surgery on monday to remove all my upper teeth because the teeth are damaged beyond repair. Partly due to medication and the sarcoid and of course it must also be due to the ice lollies. I've always taken really good care of my teeth but in the last 10 years I've noticed that as my health has deteriorated so has my teeth. My regular dentist wouldn't even look at my teeth never mind do work on it because of the prednisolone. I hadn't even thought that the GP could refer me to the hospital dental surgeon. I think I just thought even they wouldn't do anything for me. I don't know what I was thinking - of course they would do the work needed but because of leaving it for 2 years they can't repair only remove.

Oh well I guess it will break my bad craving

I've always been very lucky and have never suffered from hayfever. It must be terrible to have and it must really spoil summer for people. Whe I lived down south in Merseyside where there are fields and fields of rapeseed grown to make rapeseed oil. It has really bright yellow flowers that are bursting with pollen so you can imagine how badly people suffer when the wind blows a little! The weather report used to tell us to close the windows and doors when the pollen count was high because in some cases it was hospitalizing some people!

The only problem I get in my nose from sarcoid is nose bleeds every so often. I can actually feel the membranes swell and know in a day or so the nose bleeds will start again. After about a week and a half to two weeks it stops. I get gland pain like mumps, rather than earache so in a sense I get off lighter than a lot of you. 

Right I'm off to watch some TV and make some cards. I'm ashamed of how much I write every time I post anything here. You can certainly tell I have no one to speak to can't you? At least they are posts and not face to face conversations so everyone can look see it's me again! and choose to glimse it! Can't do that with a face to face conversation ha ha!

Hugs,

June xxx 

Aw Rachael I am sorry to hear you are having a rotten week. Is it your health that is causing you the most problems this week or are you feeling kicked when you are already down?

I do so wish we all lived in close proximity so I could call a coffee meeting. I'm sure we would all benefit from a real live group meeting. There is so much information and suggestions that is shared on-line but would do even more good on a face to face basis.

I'm not the most tactile person in the world but I have to say you feel a huge difference from having a hand squeezed reassuringly or a comforting arm put around your shoulder. It really makes all the difference in getting through a tough day. All I can do is send you a reassuring cyber hug ()

June xxx

No need to be ashamed June it's great that you share all your knowledge on the awful condition & medical terms etc with us & like me I'm sure others also appreciate your support so write away 😊

Thank you for the cyber hug much appreciated after a rotten week so far! Monday tripped me out unfortunately which triggered a migraine followed by some kind of gastric bug today and now knowing I have to wait until September before I see ENT was the final straw!

totally agree on the coffee morning idea wouldn't that be brill! I found the support I got from a group on a depression/anxiety course very helpful.

this group too is invaluable particularly your wealth of knowledge.

lets hope tomorrow is better