sarcoidosis. long term pain assosiated with byopsy.

Morning June, Thank you for your enlightening and knowledgeable reply. A fuller understanding of a problem is some-what of a relief in its self - irrespective if its good or bad news.

 Yes the biopsy (vax) did result in a lung cavity with a drain – on morphine and x-rays every day for two weeks. Strong possibility the students were involved with the biopsy. I still burp frequently with no relation to stomach contents - if any!

I was on steroids for about six months or more then taken off as they did not seem to help that much – even with my appetite.

Have tried a number of pain killers most have given me side effects – sickness, severe in some cases. Now on Co-Dydramol which works somewhat for me.

Have had green phlegm for sometime but neither consultant or GP have put me on antibiotics – I will get on to it.

I now take sotalol, amlodipine, co-dydramol and beconase.

I have been on a number of medications including warfarin for a heart problem (irregular heart beat). Taken off wafarin about 2 years ago as I was coughing up a little blood in the phlegm. Now considering putting me back on.

Over the last month the consultant has taken an interest in my problem. Two mri’s, x ray and referral to cardiologists. Prior to this I would see anyone from the team every 2 or 3 months who would spend 10/12 mins out of my allotted 15 or so reading my notes as he had not seen you before or for some considerable time.  Just hoping I now get somewhere as I now feel very low due to the pain, lack of appetite and inability to walk far. Thanks again Eve. 

Hi Evelyn,

It's horrile that they caused a puncture during the procedure. I really wish they wouldn't allow student doctors to assist during invasive tests or treatment. It is so easy to nick a blood vessel or puncture a lung when trying to get a biopsy if they are not really used to doing the test

Yes the depression that goes with the constant pain and reduced ability to perform every day tasks always seem to be overlooked. It took me ages to get through to doctors and in the end my daughter accompanied me to the GP and demanded that they gave me something to help. They gave me a low dose of Amitriptyline which helped a bit in that I stopped crying at the least little thing (depending on what sort of day I've had). In the early stages I used to get so frustrated that the simplest task was exhausting but the doctors just don't seem to get it.

I take it that you were at risk of forming clots when they put you on warfarin. It is weird that they would put you on it for arrhythmia (irregular heart beats). Again I had to make a load of fuss about my arrhythmia because no one seemed to be bothered. Even when I told them that I had the feeling of dying when I got them. Eventually my sarcoidosis consultant put me on atenolol because I had developed a racing pulse of 130 beats per minute when resting as well as high blood pressure !54/103 and the arrhythmias.

Sotalol is a good beta-blocker for arrhythmia and hypertension (high blood pressure) it also bocks potassium. It is used because it can treat atrial and ventricular fibrillation. It also blocks calcium . Calcium makes the muscles contract so no calcium no contraction of arterial muscle allowing the arteries to dilate and therefore allows better flow of the blood in them which in turn reduces blood pressure.

 Amlodipine is a calcium blocker so I'm a little concerned that both drugs are being used

Other Beta Blockers such as atenolol, block the action of hormones such as adrenalin (the flight or fight hormone which causes the heart to race) It also blocks the beta receptors which are found in the heart muscle, smooth muscle, kidneys, airways, arteries, etc. The beta-blockers weaken the activity of stress hormones and therfore prevents the heart from racing and developing irregular heart beats.

Sorry Evelyn you probably know all this already I just took the opportunity to clue up any other person on the forum who doesn't know about the action of the medications.

I have a lack of appetite too even though I'm on steroids however I am also on Oxycontin for pain relief so you might well find that it is your pain killers that is depressing your appetite as it is known to cause nausea and vomiting. Co-Dydramol consists of paracetamol and dihydracodeine so people taking this must not take aditional paracetamol.

I am allergic to dihydracodeine. It literally caused the room to come in on me and also makes me very sick. I've found that Oxycontin mediu release with Oxynorm solution for break through pain works really well for pain. However with the bad publicity it get because of abusers of the drug I find GPs constantly telling me I should go onto something else. It took me so long to find a drug that actually gave me pain relief that I refuse to change now.

Sorry a long, long post as usual.

I wish you will get some good news and more impotantly some relief from everything

Hugs,

June

 

It's called the Blue Disability Badge in the UK and can only be applied for if you are receiving Disability Living Allowance (DLA) which is changing to PIP Personal Independance Payment, or can prove you have a long term disability. I have to say from a personal point of view that having the Blue Badge does not automatically ensure you get a disabled parking space as most car parks these days are not manned and therefore people without disabilities use the spaces. I complained once at a Morrisons car park that the two young men who had grabbed the last space were not disable nor did they have a Blue Badge. The customer services lady simply shrugged and said they had no way of enforcing the law as in fact there was no law in supermarket car parks making it illegal to park in disabled spaces.

Since being disabled I have learned that there is very little in the way of preferential treatment for the disabled person. Buses have refused to take me claiming that their ramp doesn't work, train will sometimes take you but must have advanced notice. However, there are many inaccessable train stations due to steps or stairs down to platfors that cannot be used by wheelchir bound people. I've also discovered that disabled toilets are not always accessable due to space. Some proprietors think that putting in a grab rail and a raised toilet seat is all they need to do and forget that extra space is required if the disabled person is in a wheelchair. I have been trapped in 2 toilets so far due to lack of space. It is a most embarrassing situation to be in. Sorry I've brought out my soapbox again but just wanted to show that it's no holiday being disabled.

June x

I hear you,  June.  I'm disabled and fortunate for me is the parking hang tag does mean something to every store and entity.  It is against the law for anyone to park in the desginated spots, if someone does and get caught it's a $700 fine.  So, people just don't take  that for granted that the parking spot is empty, so why not take the spot...$700 is why not!  There's always those 10% who think they are above the lalw.

Geesh, June, you don't sound like you're on a soapbox hehe...the toilet situation rang a bell for me. I was in the bathroom desginated for the disabled and a few people came in and loudly said...the person in the jon probably isn't disabled, so I took that as being a learning curve for the ignorant and as I walked out of the desginated place...I said is this disabled enough for you?  They did apologize (I was shocked at that) and I told them that the 10% thinking it's a jon for them to spread out and relax...it's a JON..icky enough!

 Over and out!  <3>

Oh I get that a lot here or people rattling the toilet door until you come out and you discover that they are not disabled. It so embarrassing. I'm okay when my daughter is with me because she just loses her temper and gives them a few home truths. The only parking places that have fines attached are the ones that have been designated by the council but supermarkets, although required to have designated disabled parking do not have to enforce it or fine their customers. I just wish they would understand how difficult it is to get a wheelchair in and out of a car when using an ordinary parking space. Not only is it near impossible but really dangerous too. However nobody gives a toss about disabled people these days and I am experiencing more and more hate towards disabled people than ever before. It leaves me feeling like I'm taking up valuable space on this earth. I don't know why people are this way. I am constantly apologising for myself and it leaves me not wanting to go out so now I only go out to appointments and when I absolutely have to get shopping

June ~

It's strange how people view other people.  If you are good looking, they look up and down but when they see a wheelchair or cane of anything for that matter, the prejudice look of disgust.  Because of my condition I'm more aware of disabled people but when younger to adulthood,, I've always been sensitive to the disabled. When I had the surgery for my cervical spine, I had a huge bandage on it and could take if off only if it fell off or wait for my next appt; people looked at me as though I'd been attacked and left for dead...it was an uncomfortable look to say the least.

Don't know if you read my post about the Dermatologist visit.  My sarcoid is now on and all over my skin...it's horrible.  I scratch all the time and the doc said it wouldn't spread but if I kept it up, I could get a secondary problem...infection and then it could spread.  It's quite depressing and I just can't shake that feeling.  Well, I'm off to watch "naked and afraid"  they'd be afraid if they saw me naked LOL scarrreeeed for life

hugs,

frustrated

Morning guys

I'm not disabled but I share your frustration and anger! My dad had a disabled badge for parking because he damaged a tendon in his good leg a year or so after he had a stroke so had trouble walking any distance. Plus my best friend has achondropatellarmalacia (she grew very quickly when she was young and the cartilage in her knees never developed properly as a result so she finds it difficult to walk far). 

In Scotland the problem with enforcement is that its up to every council to pass their own bylaw on disabled parking spaces, so in some areas its not illegal to park in a disabled space on the street. Plus, as June says, supermarkets have no way to enforce the restrictions in their carparks - sad but true. Our local Asda put up signs to say if you park in a disabled space without a badge they would fine you £50 but then got told they had to take them down! Ooh it makes me so angry to see folk with no disability parking in a disabled space just to save them a walk over a carpark. 

Just don't get me started on the folk who see me and my pal at one of the big shopping centres with shopmobility electric buggies and decide she's clearly a non-person because they talk to me about her. Lets just say I'm from Glasgow and when I want to I can have a Glasgow lets call a shovel a shovel attitude and tell them exactly what they're doing wrong - and not necessarily too politely.

Anyway thats my rant for Monday morning over so guess I'd better start some work.

I'm with you on that Morag. I often get that so I sit saying. Wow! I've finally perfected it - I'm Invisible! It doesn't go down well but it makes me feel better. A couple of years ago my daughter had to take me to the emergency NHS 24 doctor and we were greeted by a nurse who spent the whole time either talking over me or referring to me as 'we'. When she finally told me that 'we' needed a urine sample because 'we' were obviously suffering from a urine infection as this is what happens when 'we' get to a certain age, I threw a massive hissy fit and basically told her where she could put her sample pot and added that I hoped the antibiotics worked for 'her' UTI.

The other thing that gets me are families with children who seem to think that constitutes as a disability and park their cars in the disabled spot saying that the mother and child spots were all full! I honestly don't know why they even started making spots for families with children except for new mums who are battling with prams as opposed to simple flip up pushchairs. There wasn't any of this nonsense when my kids were young. In fact I couldn't even travel on a bus because they couldn't take the big old fashioned pram that I used for both my children.

The best people who have even helped me on and off transport are the elderly. Before I ended up in the wheelchair I was struggling along on crutches. It was a nightmare getting on and off buses and the drivers frequently refused to lower the step. On one occassion an elderly lady who must have been in her 80s apologised profusely, grabbed my bum and hoisted me into the bus! It was so funny but also so sad that the help had to cme from an elderly lady. Once on the bus no one would give up their seat even for the elderly lady. It's so shocking and it used to make me cry. It is a world of 'pull your own weight or get off the planet'. It's little wonder we get so depressed when people make us feel so unwanted.

I have sarcoid on my skin too but only here and there. I'm still waiting on the results of the last biopsy. I got accused of scratching when I wasn't in the early days. They just wouldn't believe me when I told them the skin was erupting on its own. Then as it got worse it got itchy. Medication can also cause the sarcoid lumps to itch so check in case it's the meds in which case you could get something to relieve the itch. I know it doesn't feel like it now but the sarcoid will cycle through this stage and the lumps will disappear. Try hard not to itch because you could leave scarring whereas your skin will return to normal if you don't scratch. Try some Bio Oil or even vaseline it does help the itch a bit because it stops the skin getting that dried flakiness. Drink lots of water too, that definitely helps the skin stay supple. My worst area for itching is my back and of course I can't reach most of my back so I took to rubbing it up against something (like you see the bears doing!). I caused some serious damage. It looked like a burn and felt like it too so take it from me - stop scratching!

Thank you, Morag and June for your acknowledgement.  I don't delight in the fact that you have had situations that relate to mine, but I do know you understand. As far as my disability, I look like the average person so when I park in the disabled I do get looks like I should just get with it and park like all the others.  Still, even with a cane, the lack of compassion is definitely obvious.  When I was younger and with my children, I always took those situations as a learning opportunity.  Of course children look at the disabled with confusion but they stare which is no fault because they are still in the learning stages.  I'd tell them to always, always respect the disabled and if you are looking at them and they look back...smile and give a little wave...because more often than not, it wasn't a choice for them to be disabled. 

I do feel I did a good job in that area because my oldest is a Hospice Nurse and truly loves her job.  She loves it in that she can comfort the people around their love on whom is dying.  Plus she helps the family to help their loved one to pass on to give them permission to leave.  To me, that would be such a difficult job because it's a person leaving for good.  I am so proud of her.  My youngest is the sensitive one and shows her emotions on her sleeve.  I am proud of what she's become as well.

Ok, enough of my family.

June, the sarcoid on my skin feels like something burning up and down my arms, legs, and left side of my back...like it follows the nerves...I first thought it was shingles but it isn't....my daughter looked at it and told me to just relax. lol Now she's the parent  lol Geesh, I just thought of something...it is possible to have sarcoid of the nerves, right? 

The doctor's waiting room is known to be full of sick people coughing w/o covering their nose or mouth, others sneezing and they also do so w/o coverage and on and on. I'm just too tired to go to the doctor again.  I know it's a place full of cooties . I had two appts last week and came down with, what I believe to be, the flu or bronchitis..either way, the coughing is deep and it hurts. I do feel the doctor's office should have a room where people aren't necessarily ill but need doctor's care especially in need of a separate room are the people with auto immune diseases because they (me) catch everything. I did ask one time and in a look-down degrading tone, the front desk said "well,  here, we'll stick you in this room, it's usually set aside for the children with chicken pox or some other communicable disease" so I said "I'm wondering if I ask the doctor when he comes in to see me, I'm guessing he'd have YOU (because I'd suggest you for being such a commpassionate person that all of us agreed is likeable and kind) make a spot for people with a low immune system!"

June thank you for your kindess, I truly appreciate it.

Morag, I want to thank you as well because you get it!  I'm guessing all of us are in our elder years...me being 61....sometimes people forget that the elders aren't here to take up vacant space but we are here full of knowledge and wisdom  right?  lol Well, I'm off to conquer my quest and that's to train my pup to be a pup to visit the children with cancer or some other disease they are dealing with....Puppies make anyone smile...and she's the cutest.

Take care both of you and thank you again for being here for me.

<3 frustrated

morag, thank you as well frustrated="" morag,="" thank="" you="" as="" well="">

morag, thank you as well >

**note to the appts I had last week, it was the week prior because last week I was in the hospital M-W.  This week, however, I have two appts. an OOPSY on my part

Yes it is possible to have sarcoid in the nerves. I have it in the nerves and joints too. In the nerves it feels like something crawling and tingling at times. Other times it's painful pins and needles or red hot needles. I also lose use of hands and drop things. My nerves jump around like crazy much to the amusement of those sitting around me. I should charge for the show ha ha! In the joints it's just pain.

At the moment I'm more concerned with the infection in my mouth. It's terribly sore so unfortunately the foul tasting mouthwash wasn't enough. I realised I had a low grade temperature so took myself off to the doctors. Now I'm on Metronidazole and Clarithromycin for a week. I hate these antibiotics, they always make me feel so sick. I need to go find me some ginger I think. Sorry moany moany! I'm still smiling, honest!  this without the teeth ha ha ha!

Oh you poor soul June, I can't take Metronidazole but if it makes you feel sick perhaps some bio cult would help. Nix vom is good for nausea as is carbo veg for indigestion if your tum protests!  

You have my sympathy!

Rachael

Thank you very much Rachael. I think I might have to send for the Nix Vom though as I don't think there is a herbal remedy shop close at hand. Do Holland & Barrett supply herbal remedies? I seem to remember going to one of their shops but not finding much in the way of herbal remedies. I will definitely have to find something as I can't eat solids as such although in desperation I broke up pieces of soft bread roll, put a piece in my mouth and then took a drink of tea. Not the best way but I couldn't chew even if I had teeth. Good God I sound like one of the witches of MacBeth ha ha! I don't suppose making up a brew of wing of bat and claw of crow would help ha ha!

Now I sound like a cruel witch!

Just realised none of the local shops sell bio culture either as I'd wanted to get on that ASAP to prevent thrush which I always get when on antibiotics. I have to say even after my rest this afternoon I still feel rotten. I was taking paracetamol for the pain and temperature but forgot to write down when I had taken it last so couldn't take the chance. Oh well I will take some and go to bed now and hopefully be like a spring lamb in the morning  Thanks again for your help

June x

 June, darling...hehe cute...that was very cute

Nix vom should be available from any health food store. Boots may well stock it in their homeopathic remedies. I get Bio cult from Neal's Yard in town but I'm pretty sure you could get it online and have it delivered. I took Bio cult for over a year but my mouth has never been the same since taking those damn antibiotics! My mouth still splits at the drop of a hat which is a real pain but remedied that today by using some lip salve on it! 

Hope you feel better real soon.

Rachael

Oh that sounds very painful. You really don't respond well to antibiotics you poor thing.

Do you think that the dry mouth associated with sarcoid is also a culprit or do you not get dry mouth syndrome?

Funnily enough the dental surgeon asked me if I suffered with this and I said yes. She then told me it had gone on to cause an infection at the sides of my mouth and prescribed Daktarin cream. I was so annoyed with myself for not realising that the cracked sides of lips was due to probable fungal infection. She didn't say it was thrush but I imagine that was what she meant. Anyway the Daktarin worked almost immediately so you might want to give it a try. I honestly thought I would be in for weeks of treatment

Thanks for the advice and kind thought. I will have a search tomorrow for both remedies.

Hugs,

June x

Can't say I had heard of dry mouth and sarcoid but ever since I took the antibiotics last year my mouth has never recovered. I could ask I suppose but as they dismiss the sinus infections and ulcers on the eyelids as anything to do with sarcoid I can guess what they will say!

Yes dry mouth is one of the sarcoidosis symptoms but of course not everyone suffers from it. It was the first thing the dentist asked me. "Do you suffer from dry mouth due to your sarcoidosis" which of course was a yes as I tried to peel my dry tongue from the roof of my mouth - sorry too much information. It's so embarrassing when you are talking to someone and you have to excuse yourself bbecause you have to drink some water. I literally 'dry up' in mid sentence.

Are they saying that your sinus problems were due to another disease? Did they even do any tests to prove you wrong?

It annoys me when doctors dismiss things without tests.

I have sarcoid just inside the nose not all the way through the sinuses and as the sarcoid cycles its way through the various parts that are affected, when it is my skin and nose's turn, I get heavy nose bleeds. They last about a fortnight and then nothing for a month or so then off we go again. I think people know their own body best and if you felt it was sarcoidosis in the sinuses then you are probably right

The only reason I think it is sarcoid is down to the ENT consultant telling me she found granulomas in the mass she had to remove from inside my head. Before my diagnosis I had never had any kind of sinus problems and rarely got a cold but ever since then I've had a catalogue of disastrous ops and infections not helped by terrible stress at my last job and a completely unsympathetic boss!