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Sarcoidosis - not enough care and attention given to sufferers

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ailsa_june
ailsa_june

Hi, I've only just joined this forum but as a long term sufferer of Chronic Sarcoidosis I thought maybe I could say a few things on the matter. First of all I was shocked to read that one of the forum members had been told by his specialist that night sweats are not a symptom of sacoidosis. Nonsense! night sweats and indeed profuse sweating during the day are symptoms of Sarcoidosis. The lack of support for people suffering from sarcoidosis is dreadful but the truth is that not enough is known about the disease and especially amongst UK doctors. American doctors are more on the ball but then they have the money for research etc in the US. I spend my entire time fighting and arguing with health people, trying to get appropriate treatment for my various symptoms. Luckily I have an excellent respiratory specialist but that is all he is a respiratory specialist so when it comes to all the other problems I have due to sarcoidosis such as skin, eyes and nerves I have to fight to get tests and treatment as either no one believes me or they think it is up to my respiratory specialist to deal with it. He in turn kicks it back to my GP (rightly so) and at the end of the day nothing gets done as no one will take responsibility for the symptoms! It's a ridiculous situation but it boils down to money as all these MRIs and tests are very expensive and neither party wants to foot the bill. The over powering fatigue is dreadful and I can literally fall asleep in mid conversation. Also the depression that comes from constantly feeling unwell and the frustration of fighting for proper care also takes it's toll. The sweating I spoke about earlier, can not only hit at night either as I find that expending a little energy just hoovering a carpet can cause sweat to literally drop off me. At the moment I have severe pain and severe pins and needles in both arms and hands and it has taken me 6 months to finally talk my GP into allowing me to see a neurologist. I will see her tomorrow but my respiratory specialist told me not to hold out too much hope of being believed! So you see even the doctors who understand Sarcoidosis know the taboo within the health sector so what chance do we have? I was originally on high doses of steroids but unfortunately they caused me to have a psychotic break so I had to be taken off them so I am now on an inhaler and mucosal thinner to try to combat the extremely thick, sticky sputum I cough up.In one sense I suppose I am luck as I am already in a wheelchair due to nerve damaged feet (hospital screw up!) but I had to change to an electric wheelchair because with being so breathless and having nerve problems in both arms I couldn't propel myself around in my manual one. I say I'm lucky to be in a wheelchair only because without it I wouldn't be able to get around at all because of the sarcoidosis. I sometimes wonder if UK doctors have a bad attitude towards sarcoid sufferers because they think everyone only has the acute sarcoidosis and it would probably resolve itself or even come and go undetected in it's own time. I really don't know but what I do know is that they need to become better informed about this disease and be more caring when treating their patients. It's not a deadly disease but it certainly takes its toll on the sufferer and the symptoms need correct and fast treatment before they become a real problem. Keep your chin up fellow sufferers and don't be scared to be pushy with your GP. He has a comittment to treat his patients whether he thinks its serious or not. You have a right to demand to see a specialist or to get a second opinion but do remember that not everything is linked to your sarcoidosis so if you develop a new problem make sure you get it checked out properly and don't be fobbed off with your GP saying it's just a symptom of your sarcoid because it could be a different health issue altogether.

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  • ailsa_june
    ailsa_june

    Posted

    Hi everyone and a special welcome to all the newbies. I'm so sorry I haven't been on my soapbox for so long but have been feeling really terrible for the last few weeks as my sarcoidosis is once again out of control. My consultant has told me that I will have sarcoidosis for the rest of my life and between the two of us we were trying to get my steroid dosage down to a level which I would have to stay on for the rest of my life but unfortunately as we reduced the level the sarcoid bit back and loads of my symptoms came back with avengance. Pouring with sweat, sleeping for hours, joints and nerves so bad I couldn't get out of bed without increasing my oxycodone and couldn't hold onto things like cups of tea, a dreadful cough and severe breathlessness, wonderful lumps appearing on arms, face, breasts and back. Sorry I sound like a walking Frankenstein which is what I felt like. I've had more skin biopsies done yesterday after the ointments and creams I had been given for different parts of my body had no effect whatsoever. The last biopsie showed multiple moles, ulceration and inflammation. I was terribly depressed with it all because on top of being unwell my housing association were dreadful to me and what did my consultant say to me "don't get stressed over things because it makes your sarcoidosis worse!" I had originally complained to them because a neighbour was in front of my window calling my all sort of profanities. Apparently she was angry with me because her cat was eating the seeds and food I had put out for the birds and strays. The food was good quality cat food and the seeds were from a large sack of wild bird seed which I purchase every couple of months. Anyway I wasn't going to put myself in harm's way so I just phoned the housing officer and complained. They said I'd done the right thing and would come and speak to me etc. When they arrived (two women) they told me a complaint had been launched about me and then they just got nasty. I'm not allowed to feed the birds or any other wildlife. They upset me so much that I asked them to leave because I was feeling unwell but they wouldn't! 3 times I told them to leave but still they went on at me. I told them I would leave my present flat and go somewhere else and they told me I couldn't!!! They said I was adequately housed and no one else would have me. I was so shocked at the way they spoke to me. I finally got rid of them but their visit had taken its toll on my health so along with the reduction in steroids and stress my sarcoid just blew up out of control again.  I'm telling you this story because you all need to remember how bad stressful situations are on your sarcoidosis and you all must try and avoid getting into a state over things although it's not always possible.

    Having chronic systemic sarcoidosis I can identify with all of the symptoms I have read that you are all suffering from. I was told by my consultant that sarcoidosis does indeed attack the joints and nerves. It can attack any part of the human body because it is an Auto Immune disease. For those of us who suffer joint pains, it is inflammation that is causing the pain and as nerves run throughout the body any inflammation causes swelling which then presses on anything close by such as nerves. I have carpal tunnel syndrome caused by sarcoidosis. I also have severe pain in my spine and other joints and get weird tingling and nerves jumping all over the place. When I lie on my back in bed, my legs start jumping. It is a weird feeling. Like Linda says it feels like something moving under the skin. I have to be honest and tell you I thought something had bitten me and had got under the skin, I was so freaked out. For the carpal tunnel you can have the nerve released surgically but if it is caused by your sarcoid there is no guarantee you will get any benefit from the operation (so says my consultant and I believe him). I was told after tests that the  nerve damage/involvement was really high but I find the pain and tingling/pins and needles comes and goes and had certainly improved when I started to take hydroxychloroquine, although recently nothing is easing the pain and effects. I am also a firm believer that weather plays a big part in how sarcoid affects us. Wet weather for example really makes the joints ache as does very hot or cold weather. Sarcoidosis can also affect the organs, heart, liver, pancreas etc. however please remember that not all ailments are caused by sarcoidosis and if you are feeling unwell or in pain or you've noticed a new symptom, you need to go and see your GP and if you are not satisfied then you need to ask your GP to refer you back to your sarcoidosis consultant who will be able to help you. It's one thing compairing symptoms with other sufferers but you must remain figilant and not overlook what might be another illness. The sooner an illness is detected the sooner it can be treated but simply classing it as sarcoidosis every time can be dangerous. Also your GP and your consultant always need to know of any new symptoms as they must keep accurate records of your health. The best thing is to keep a diary and write down how you are feeling and if you have noticed anything new or anything has improved. You can then show your doctor and it could help other sufferers as not enough is known about sarcoidosis because there isn't enough research going on.

    I noticed a few of you saying you get relief from herbal remedies. Can I just warn you all that you must check with your doctor if it is okay to take the herbal remidies along with the medication you are already on. You would be amazed how many bad interactions arise from combining the two. Herbal remedies are great but please check first and also be aware if you suddenly get a new symptom whether it coinsides with starting a new remedy whether medicinal or herbal. This is where keeping a diary is a good idea.

    Sarcoidosis sufferers don't always require steroids. Depending on how bad your sarcoidosis is and weighing up the high risks that comes with taking steroids, against any damage the sarcoid might cause is often how the consultant comes to his decision. Some sufferers never even know they had it. Others are lucky and it fizzles out on its own. Pulmonary sarcoidosis usually needs treatment because of the risk of scarring to the lungs. Correctly diagnosing Sarcoidosis is really difficult too as a lot of tests such as blood tests for ACE which is Angiotensin Converting Enzyme found in blood and this can elevate if you have sarcoidosis but it doesn't always. Mine was off the scale it was so high but I have severe chronic systemic sarcoidosis (what a mouthful!!!) so I was diagnosed very quickly. Also if your sarcoid is the acute type them it is much less likely you will be put on steroids but the doctor will of course continue to monitor you closely in case things change.

    I'm so sorry to hear so many of you are suffering so much and I can only hope you are all feeling better soon. For those of us sweating a river, I can only suggest wear cotton items and get a good electric fan. I always have a towel around my neck too which at least stops it soaking my clothes. For the ones suffering with pain, tingling etc in wrists and hands, I would strongly recommend you get yourselves wrist braces. I have the wrist and thumb brace ones because they ease the pain when the thumb is also supported. You can get your GP to refer you to orthotics in your hospital and then you won't have to pay. I think they are around £20 if you buy them now. If buying them get the neoprene ones as they are really comfortable and last the longest

    Sorry to have gone on and so sorry to have been out of touch too. Take care everyone

    love and hugs

    June  

    • rachael88657
      rachael88657 ailsa_june

      Posted

      I wish my ex boss could read your comments! I left my job because of ill health (work related stress)  but the sarcoid was the start of it all. I was on a spiral of time off with things going wrong and then being disciplined for too much time off. So I was damned whatever I did. My gradual and progressive decline was recognised by my GP and occupational health but as you say trying to avoid stress is nigh on impossible. Herbs have helped me with my GPs blessing as they concede I don't do drugs! And I think I said check with your GP before taking anything herbal for fear of contra indications. Sleep apparently is vital for us sarcoid sufferers. Have been told to get to bed by 1000 as sleep is vital for the adrenals to do their repair work. 

      I can sympathise re the bad neighbour situation as I had that to contend with when work was being so difficult so I had no respite at all. Stress is a killer in more ways than one!

      Anyway enough from me for now hope you feel better soon

    • ailsa_june
      ailsa_june rachael88657

      Posted

      Hi Rachael, I'm really sorry to hear about your work problems. You would think in this day and age bosses would realise when a worker is genuinely unwell and give support. It is a great pity he couldn't have just signed you off until you were diagnosed. I strongly believe that if every work place had assistance on site such as a psychologist to help people through any stress they are experiencing, there would be less lost work days from employees. Sick building syndrome is still rife in some places too. I get terrible headaches from strip lighting, especially if they are under those plastic squares in the ceiling.

      Sorry Rachael I didn't mean to say that you hadn't warned about checking if there was any interaction between herbal remedies and other medicines, I just wanted to reinforce the fact that sometimes people think herbal remedies aren't real medicines and nothing could be further from the truth therefore check before taking with regular meds. I'm also reeling from being told that one of my daughter's friend's mother had died suddenly and it turned out she had been given an opioid medication from a neighbour because she had told her she had severe back pain. It's the old story of "never give your prescription to another person" and yet here we are in 2014 and still ignorance reigns supreme. It's a terrible thing to have happened and I get that her neighbour thought she was doing her a good turn, but now she's gone and her neighbour must be devastated. Anyway I'm really sorry if I upset you in any way about the herbal meds, it really wasn't my intention. 

      Holistic and Homeopathic medicine is being used more now (depending on your GP's views). They are ideal compliments to general medicine. It is a totally different feeling when you go there too. There seems to be  a calmness to everything. You can even be admitted to their 'hospital' if needs be.

      I was referred to a Homeopathic doctor several months ago. She was so nice I felt like I was a private patient! She wanted me to be admitted for a week but lovely as it was I turned her down (although the offer still stands). Unfortunately I am hospital phobic after several operations went horribly wrong. I know the Homeopathic hospital is different but when you have a phobia you just can't do it. I would definitely recommend it to anyone though. They work in tandem with your GP or consultant so don't be afraid to ask your GP if there is one close enough to you. Stress as you rightly say is a killer and where Auto Immune dieases are concerned, stress has been proved to make the disease much worse.

      Thank you for your kind words Rachael. My neighbour situation got ridiculously out of hand. All she had to do was knock on my door and ask me not to feed the birds but she chose instead to scream profanities at the top of her voice instead leaving everyone wondering what was wrong and then of course my name was mud with everyone. No one wants to hear the true version of events so like Chinese whispers the whole thing blows out of proportion. I just want to leave here now as I hate it so much. Ah well beggars can't be choosers as they say.

      Kind regards,

      June

       

    • linda39
      linda39 ailsa_june

      Posted

      A BIG SIGH OF RELIEF THAT YOU ARE BACK JUNE

      we were so worried about you.

      So sorry to heare that you have been having an awful time from all angles.

      will answer fully later

      xxx

       

    • rachael88657
      rachael88657 ailsa_june

      Posted

      Don't worry June things will get better neighbour wise! Wish the same could be said for sarcoid!! Will continue to use alternative treatment as my mouth was so badly damaged last year by antibiotics that it has never been the same since. My latest Cxr shows infection deep in the lungs but they want a sample from me! lovely!!! My GP is very understanding and has held back until we can get a better idea of what is going on but to be honest I'd rather stick with natural remedies that don't have hideous side effects.

      hang on in there we will not be beaten!

      rachael

    • CassyS
      CassyS ailsa_june

      Posted

      Nice to have you back June.

      So sorry to hear about all your struggles at the moments. I hope your sarcoid calms down very soon & is more manageable for you.

      Must be awful having such nightmare neighbours 😞 hope that situation is resolved very soon

    • ailsa_june
      ailsa_june linda39

      Posted

      Awe thank you Linda. I'm really sorry I gave you all a fright but I have to say I wouldn't have been much use to any one the state I was in. I've just this minute come off the phone (a very dangerous place to sit!) as the housing association phoned to tell me they are finally dealing with my complaint regarding the shocking way I was treated by their staff. I will find out on Friday what is happening but I only hope they are not going to upset me again.

      Thank you for caring so much xxx

    • ailsa_june
      ailsa_june rachael88657

      Posted

      Oh you poor thing Rachael. The sore mouth is due to the natural flora of the mucose lining of the mouth is destroyed by the antibiotics. That is the trouble with all medications they don't just attack what they are supposed to they attack healthy cells too. I totally understand why you don't take antibiotics but please rethink taking them if they can't get your chest infection under control, will you? There is such a high risk of you getting scarring in your lungs with repeated chest infections and unfortunately once the lungs are scarred, they are scarred for good leading to many more problems. Some can develop into life threatening problems. Remember that our whole body depends on a good oxygen supply and when the lungs take a hit so does everything else including most importantly, your heart. I'm glad your GP is waiting to see what the tests show. There is only so much information you can get from X-Rays and scans and there is no point treating a chest infection if in fact it isn't that but the sarcoid showing up on X-Ray.

      Good luck for your tests and thank you for your kind words xx

    • ailsa_june
      ailsa_june CassyS

      Posted

      Thank you so much for your support Cassy. I shouldn't let people rattle me so easily. I just don't understand why people have to be so rude instead of just talking over any problems. I try to be nice to everyone but I seem to get put down when ever I do.

      It really has made my sarcoid terrible. Last night I felt a strange sensation across my upper left back and lumber area of my spine. After musch twisting and turning I couldn't get a few of the areas so I  used the camera on my mobile phone and was shocked to see loads of sarcoid rash!

      Yesterday I was at the health centre seeing one of the psychology doctors (she is helping me manage my depression following all the failed surgeries etc) and she kept telling me she was worried about me because I was so breathless. I don't know about the rest of you but I don't always notice the breathlessness until someone points it out to me. Yes, when I am very short of breath I notice and I have noted that I am very blue around my mouth a lot of times (and I haven't even been eating blackberry pie !!!) I think I only notice when I have nothing to do. I suppose, also because I am in the wheelchair I'm not exerting myself like everyone else. My God if this is what I feel when my bum is always on the chair I hate to think what you poor guys are suffering. I really shouldn't moan about my symptoms when I am basically resting all the time!

      Thanks again for your support Cassy xx

    • linda39
      linda39 ailsa_june

      Posted

      No worries June, as long as you are back safely with us all now.

      So pleased to hear that the housing are finally seeing things from your side, and not before time, you have had constant problems from that lot, they ought to be ashamed of themselves.

       

    • rachael88657
      rachael88657 linda39

      Posted

      Unfortunately bad neighbours of that calibre don't have any qualms about who they upset or what they do! But suffice to say I had to go and stay at friends it was that bad my health suffered as I couldn't sleep and we all know what sleep deprivation does for us!
    • rachael88657
      rachael88657 ailsa_june

      Posted

      Unfortunately I believe the damage is already done!  It's not my lungs that bother me so much as my sinuses. I've had this going on for years now and nothing has got rid of it and with ENT it seems to be a relentless cycle from head down to the chest! Heigh ho
    • CassyS
      CassyS ailsa_june

      Posted

      My pleasure June

      There are some awful people around & I'm sorry to hear that some are next door to you. I know its easy for me to say but just try & ignore them. Be polite if you need to talk to them but other than that don't waste your time.

      Please don't feel that you can't have a good complain  about everything as that's what the forum is for. We all are fighting our daily individual battles & it it can be eased by having a moan & receiving abit of support via this forum then that's good xx

  • sharon26982
    sharon26982 ailsa_june

    Posted

    My Poor feet are swelling again x😁 go away if a put them up for a few hours but carnt walk far - pisses me of when I get people implying a should go walking to loose weight - rant over x 
    • ailsa_june
      ailsa_june sharon26982

      Posted

      Awe Sharon sorry to hear your feet are so swollen. The weather isn't helping either. It probably has nothing to do with your weight as lots of Sarcoid sufferers get swollen feet, me being one of them and I'm in a wheelchair! People can be so horribly spiteful can't they? The trouble is they can't see your illness so they don't believe you are suffering. It's just like Linda said, "when you are well people notice but when you are sick no one says anything".

      When you put your feet up, make sure the whole of your legs are supported and that the level of the stool is correct as too high or too low can cause more problems. Try putting a bed pillow long ways under your legs so that it comes right up under your thighs. This way your knees are supported too. I had a friend many years ago who was a freelance journalist and therefore had to walk a lot collecting her reports. (She was skinny too!). She used to lie on the floor for 15 minutes to half an hour with her feet and lower legs up on a dinning chair. She used to swear by this method for easing swollen tired feet and legs. There was one time she got so comfortable she fell asleep and we founf her half way through a buffet dinner we were hosting ha ha! I have to say she lasted the evening much better than I did so I started to do the same technique and have to say I felt very refreshed afterwards!!!

      Kind regards,

      June

    • linda39
      linda39 ailsa_june

      Posted

      Girls...I get swollen feet a  lot since having Sarcoid, and I am under 9st...so there is no theory in this being due to weight.

       

    • linda39
      linda39 sharon26982

      Posted

      That is exactl;y how my ankles swell up, but also sometimes across the front.

      The only good thing about that is that people can 'actually' see it

       

    • ailsa_june
      ailsa_june sharon26982

      Posted

      Hi Sharon, I just realised you'd cleverly put a photo of your feet on your post. It looks like you have a large ganglion there. I have exactly the same swelling on my feet too. Aren't they horrible? They've got nothing to do with weight. If they are ganglions (and you need to be sure so ask GP) you are not going to believe the cure....it is to hit them with a large heavy book...honestly I am not joking. People get ganglions in lots of places and some have to be operated on to get rid of them permanently but a lot of them go with a hard slap with a book. Years ago people used to use their big family bible which did the trick. The ganglion is full of a jelly-like substance hence the reason why it disappears when you whack it. Please check with your GP first though. I can't have you telling me you broke your ankle because you whacked it too hard cry
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