Sarcoidosis - not enough care and attention given to sufferers

Hi MM,

Sorry to hear you are still feeling rough. I was about to post a question to the forum when I read your post. I was actually going to ask if everyone was feeling the effects of our weather just now as the pressure is bouncing from high to low so it is little wonder those of us who suffer with joint problems are feeling the worse for wear. At least that is my take of it. Cold wet weather really affects the joints. I'm sure any arthritis sufferer would agree. I am also suffering with lymph gland pain especially under my right ear and right side of neck, just like mumps pain. Today I've already had to take 3 lots of pain relief as it is so sore. Who told you that Lymph node involvement was rare in Sarcoid? I'm only asking because it isn't rare at all but maybe I've misunderstood what you said (I'm really sorry if I have misunderstood what you said, unfortunately it's part of being dyslexic it's sometimes hard to understand the written word).

I also started getting pain in the lymph nodes in my chest which is something I haven't had since a year ago. The steroids shrank the lymph nodes and so got rid of the pain in my chest but the neck ones hurt off and on and have never been pain free unfortunately.

I also think the weather has a baring on the fatigue we are experiencing as I think all our members have said they are struggling with it. Sorry it's not being very supportive telling you we are all suffering with fatigue but honestly I am very sympathetic towards you as you are also back in full time work and that in itself is a majory problem when you have Sarcoidosis. Is there any way you could perhaps go part time for a few weeks to see if you can increase your stamina a bit at a time instead of going straight into full hours? Do you have a sympathetic boss who might allow you to do this? It might be worth while talking to him/her and explaining your illness and it's symptoms. It's better to go slowly back into long hours than over do it and be off sick full time. I think any boss in his right mind would see the benefit of you taking it slowly.

As regards any permanent damage being left after the Sarcoid has calmed down and gone (hopefully) into remission, it would depend on whether you had any arthritis, whether rheumatoid or osteo before you had the Sarcoidosis. If so then certainly I would think there would be damage as the Sarcoid has increased the inflammation in and around the joints. There again it would also depend on how long the inflammation had been going on for and if it has caused damage then it will remain damaged as joints cannot repair themselves.

Like me you probably have carpal tunnel syndrome where the median nerve becomes compressed in the carpal tunnel of the wrist because it is swollen and inflamed and no longer fits snuggly in place. The thumb, index, middle and half the ring finger is affected but I found that my whole hand and wrist are affected so I wouldn't go by the text book too much if I were you. You can wear wrist splints to ease the pain and pins and needles effect and if it is bad at night too I would recommend wearing the splints in bed too. I find the pain and tingling sensation wakes me at night and if this is happening to you then it will also be adding to your fatigue. Again I find that the weather conditions make it more sore at times especially wet and cold conditions.

I did find that my joint pains were reduced when I was started on Hydroxychoroquine but I have a feeling you said you were already on that drug (or it was one of the other members). If you're not on it then you might want to discuss it with your GP and see what he says. As for feet and ankles, make sure your feet are kept warm at all times (some thermal socks might help) as obviously the cold makes them much more prone to pain. Possibly don't wear heels either as you are putting a strain on your joints in your feet and they will hurt more if they are already swollen and inflamed.

Maybe the change in specialist will be a good thing. It's always good to be seen by a fresh pair of eyes and maybe this doctor will be up to date on Sarcoidosis - fingers crossed. I totally get how you are apprehensive though. Better the devil you know than the devil you don't know as the saying goes. You can request to be seen by the consultant you usually see though and so long as he is on duty they can't refuse you. Just tell them when you check in for your appointment. You might have to wait for a bit longer but if it makes you feel better about the appointment then it will be worth the wait.

I wish I could be of more help MM as I think you are feeling very down at the moment. I hope some of what I've said has helped but I really do think you need to ease yourself back into work rather than go full time.

Big hugs and huge shoulder for support. Feel better soon.

June

Weather affecting me? Does that include exhaustion from having to swim everywhere because there's so much rain around? ;-)

Don't know if its related to sarcoidosis or not but I generally feel less good when its cold and wet and miserable. Give me cold and dry any day.

MM, I'd give the new doctor a go. Might just see something different from the previous one or be more supportive. At least if you give them a go then you know for the future which you'd prefer to see.

Not much going in my world right now

Morag

I'm really sorry I didn't mean to intimate that everyone's symptoms were down to the weather. Not at all. I just meant that the wet and cold seems to make people with arthritis and joint and bone problems seem to experience much more pain. Sorry if I've upset anyone I'm not very good at expressing myself sometimes and it comes across all wrong.

You didn't upset me, I was just answering the question you asked honestly. Yeah I feel worse in cold and wet but I can't say its necessarily related to sarcoidosis as I've tended to feel that way for years. For people with symptoms related to joints etc then I'll bet this kind of weather makes their sarcoidosis feel much worse.

Funnily enough Ive felt a bit under the weather the past few days and my daughter said to me 'you can't put everything down to Sarcoid' which I know she is 100% right, but it is just we tend to feel worse then we would of if we didnt have Sarcoid.

But on the whole I really do feel I am so very lucky at the moment compaired with so many other sufferers.

Hi June,

You did not upset me at all, quite the opposite. I agree with you and Morag, hopefully the new consultant will have a fresh approach and hopefully has some kind of a bed side manner. I never had any Rheumatoid problems (other than stiff joints for few years, that could have been an early sign) until my majorly swollen ankles in Oct 2012, from there I started having parallel joint pain like RA would have. Same pain in both elbows, wrists, etc but RA tests all came back negative. Its the RA symptoms being rare I was referring to, normally it all starts from lungs or another major organ, eyes, skin.. but mine was all joints to start with, the lung issues joined the party after. Lymph nodes seem to be very common. Mine hurt quite a bit but not in my neck, more under arms, chest, behind the knees.. that's how they also thought I had a lymphoma but after lung biopsy last April confirmed that it was Sarcoid. Weird observation is that my calcium levels were rather low that high.. My auntie who has very similar symptoms had a lot of calcium in her different organs, but I did not. Well not that we get too much sun here in Scotland!

As for time off, she is very flexible but I'd have to make the time up after. Thats the company policy and my Boss' hands are tied. I think Iif I still feel like this next week, I might have to go off sick for a little to get myself back together.

Thanks again for your kind wirds

MM

Oh that's a relief that I didn't upset anyone. I thought I'd done my usual thing of opening my mouth before engaging my brain!

I think when we already are contending with the sarcoid symptoms, anything else we get just tips us over the edge and it's really hard to put on a brave face some days while trying not to sound like we are always moaning. I think we've all got a great deal to moan about and it's little wonder we feel so down sometimes.

Oh I get it now MM. Yes, apparently it's usual for Sarcoidosis to start in the lungs but then if it takes our GPs and consultants so long to diagnose us in the first place it may very well have started in the lungs, calmed down there and move to the other parts by the time they give a firm diagnoses.

I just had the enlarged lymph nodes in my neck and chest and am suffering with the mumps-type symptoms at the moment. I think if I had found any lumps under my arms I would have freaked out thinking of breast cancer. The TV seems to be so full of check this and that it could be cancer that it actually angers me because they are scaring people rather than helping them. Saying that a persistent cough or blood in your pee could be cancer is one thing but they shouldn't be scare-mongering. It might have been better to say a cough could indicate bronchitis or possibly cancer not just a flat out 'it could be cancer' I've asked loads of people their opinion of the advert and everyone of them said they didn't agree with the advert at all. I don't imagine the doctors appreciated it either. I'm all for people being made aware of the risks and the importance of checking oneself just not the way these ads were put together.

I don't think anyone could fault you for taking time off work, MM. You know your own body and I always think it's better to have a day or two off than to become so ill you are off work for weeks.

June

Well everyone I just got an email from patient.info telling me we had a new member but didn't notice that in actual fact they were not a new member to our forum but had started a new forum on Sarcoidosis themselves. I had already answered them when I realised what had happened. Anyway the reason I am telling you all this is because I found the posting very confusing. The girl said she had been suffering for 20 years and that she had just been put on the waiting list for a double lung transplant but that her doctors didn't know what was wrong with her??????? You can imagine my reply was one of confusion. I said that I'd never heard of just a lung transplant and that it is usually heart and lung transplant. I also said that it would be a surgical disaster to operate on someone when they don't know what is wrong with them although she is from Toronto so maybe they do things differently there or maybe I've been retired from nursing too long.

Anyway you can read it for yourselves if you want and tell me what you think. She has just entitled the forum Sarcoidosis but you can copy and paste this link to get to the page

https://patient.info/forums/discuss/sarcodisis-62718?utm_campaign=forumemail&utm_source=sendgrid&utm_medium=email

I got an email as well, read the post and was totally confused! Glad it wasn't just me.

And as far as I'm aware they don't tend to do a double lung transplant, and they certainly wouldn't do it without knowing whats wrong with the patient!! Thats from reading recent published medical research, I'm sure someone would have written papers if they were doing lung only transplants.

Hi All,

Me too, got it and first thought we have got a new member but then realised that she is from Toronto. As you say June, they might do things differently there. I was confused too, don't know much about transplants so it scared me a little! I have not received any other notices of any other sarcoid forums, maybe it is a new thing to link them for our info?

Hope everyone is OK

Love

MM

Thank you so much Morag, You've put my mind at rest. I did leave her an answer which I hope she doesn't take the wrong way but honestly I have to admit I was asking myself if it was genuine or not, but then I thought that English didn't appear to be her native tongue so maybe something was lost in translation. We will perhaps see if she answers my posting.

Hope you are keeping well. The sun is out today which usually makes people smile more although the damp does play havoc with the joints. Are you still wearing your water wings to get you from a to b? ha ha! I wonder if they will still put a hose pipe ban on down south this year...Surely not! Nothing surprises me any more.

Thanks again for your quick reply

June

I thought it read like English wasn't her 1st language too, reminded me a lot of the papers I edit for foreign authors. So maybe she's misunderstood something the doctors are trying to tell her or we've misunderstood something she was trying to say.

There is a strange glow in the sky today - someone told me it was called the sun but I'm not sure whether to believe them ;-)

Even better than that I had my last trip to the dentist until my next check up is due! Ok that's nothing to do with sarcoidosis but I have a phobia about dentists so its something worth celebrating

Hi MM thank you for answering quickly too. I don't know what I was thinking when I answered it. I really thought it was a new member joining us and had posted my reply before realising it wasn't our forum Obviously I was half awake as usual.

I don't understand why someone would even start a new forum considering how many there are already on Sarcoidosis. She would be more likely to get an answer and support if she just joined one of the other ones.

Like you, this is the first time I've ever received notice from another forum. It's really odd. Like Morag you have also put my mind at rest so thank you so much. I really did feel guilty thinking it was not a genuine post or at least a post that was confusing and had left out an awful lot of detail. We might never know but in the future I will be paying more attention and ensuring it is our forum I am posting on!

Hope you are feeling a bit better although with all this damp I know your joints must be giving you jip. I was really sore yesterday but then the barometric pressure was up and down a fair bit and in the afternoon the heavens opened yet again.

I throw seeds and bread to the birds every morning and now I watch them waddling through the pond that was once a garden to get to the food. I'm sure I saw a flock of them making an ark ha ha!

Oh well all I can say is keep warm and try to stay well. Thanks again

June

Well done Morag for going to the dentist it's something very few people do without that fear. It is something to do with sarcoid in a way, because you can get sarcoid in the mouth as I have. It's over my palate and the dentist discovered it just before I was diagnosed but didn't know what it was. It's even at the back of my throat. I wanted to go back to the dentist but he won't touch me until I'm off the steroids so he told me.

So far I have lost a crown on a front tooth (or cap I don't know which one is which) and snapped a molar because it was more filling than tooth. I am desperate to get a dentist to fix my teeth as they are slowly but surely getting one problem after another. I did mention it to my consultant but he didn't give me any hope for finding a dentist that would fix my teeth. Apparently they are scared I would get an infection and because of the steroids etc the infection would get out of control. I'm more concerned about getting an infection if they don't do anything to my teeth!

Anyway I'm glad you have your teeth in pristine condition and smile the minty smile ha ha!

And the strange glow in the sky...ha ha very funny I just hope it's not a train coming!!!

Hi everyone,

Well done Morag! I had lots of problems with my teeth a couple of years ago, I broke one on a stuffed olive - not the hardest of foods. My dentist had been nagging me about my dental hygiene and I had to take notice or lose all my teeth. As a result I have been diligently using an electric toothbrush, floss, etc and on my last check up he said I had totally transformed my dental health. Forgive the boast, but I was so pleased. So boring as it may be, doing all the things they tell you to does work.

I was also confused and a little concerned by the post from Canada which just didn't make sense. The Canadian health service is very good and it certainly seemed like the correspondent hadn't understood what she was being told. I was a bit worried because you do hear of cases where scammers go onto a special interest health forum, spin a sad story and then ask for money, not that I'm saying that's what the post was. I expect it was just someone googling sarcoidosis and picking up on the information on this forum.