sarcoidosis. long term pain assosiated with byopsy.

Chest and lungs
1

Good Morning.   Had a lung biopsy 2 years and 10 months ago -to confirm sarcoisis. Told its overnight stay - turned out to be 2 weeks. Had serious pain ever since ALWAYS originating from biopsy site and been getting progressively worse. Breathing is poor due to sarcoid but made much worse by the pain as it seriously restricts my breathing any depth.

Can only walk 2 to 300 yards

Sleep reasonably well (other in humid weather) Awaking once or twice due to breathing difficulty.

Generally awake with little or no pain at around 4.30 to 6 am. then sit by open window or by a fan.

Bed is at about 30 degrees.

Original pain was from biopsy site and around lower r/h ribs to sternum.

Its progressed over time to around all lower ribs and then up centre of the chest.

Each day it STARTS at the biopsy site.

I have for some time had difficulty clearing my throat and frequently bring up flem.

I eat very little as I feel sick most of the time - probably from throat discharge and / or  the pain killers which have little effect.

Have recently had an Mir scan which was inconclusive and now awaiting another on my upper spine as they still think its nerve damage - although the pain doctor considered it not to be nerve damage.

I have now also been referred to cardiology as the tightness in my throat, constant dry throat and cough  may be heart related.

Any suggestions or advice will be gratefully received as I don’t feel I can go on like this much longer.  Eve.

 

2

Other than poor you, that lot doesn't sound great.....

my first question would be what medications are you on? I know they have a lot of side effects but oral steroids could probably help with some of those symptoms. Also the dry throat and cough could be related to ACE inhibitors, for instance, for high blood pressure rather than sarcoidosis. Lots of other drugs also produce those as common side effects. A referral to cardiology is probably a good thing because hopefully they can rule out a lot of problems.

I'm not surprised that you suffer from pain in your chest if you have breathing difficulties because of sarcoidosis. I have a friend with asthma who regularly suffers with a sore chest because she has to expend more effort in breathing, especially if she's tired. Its quite common for pain to start at a biopsy site - think its because its a less resistant area. Been damaged before (just from having had surgery) so its the spot where any pain is more likely to start. But its good that you have a pain consultant. 

The only things I know about for nausea is the stuff like peppermint and ginger and not sure how helpful they'd be if its caused by the throat problems you mention. But if you haven't, it might be worth a go.

Not sure how much help I'm actually being here but please don't give up. 

Morag

3

You poor soul Eve we can all sympathise to varying degrees. The mucus problem is one that drives me round the bend but because I don't do antibiotics I use a herbal medicine made by my herbalist. I understand the chest pain too but mine is/was due to enlarged lymph glands and comes and goes at random times. I've been offered steroids but in discussion with my GP it was decided that the inevitable weight gain would be counterproductive for my knees that always bear the brunt when the sarcoid flares up. I am waiting for an ENT apt but the earliest they had is 29th September so no quick fix for me at the moment!

i'm sure the others will be able to give you more constructive support so don't give up you aren't alone!

4

Hi Evelyn,

Sorry to hear you had such a bad time. You didn't say why the overnight stay ended up being a 2 week stay. Did they possibly puncture a lung causing air in the chest cavity (pneumothorax)  which would have caused a lot of sudden pain and would have possibly required a drainage tube? However if the tear was small they would have left it to seal itself.

Any pain after this would have been due to enlarged lymph nodes within the chest or possible scarring to the lung tissue due to the sarcoidosis. With the length of time since you had the biopsy it is highly unlikely that it has anything to do with the biopsy and is just coinsidence that it stanrts around the same site. It is possible that swollen tissue is pressing against a nerve or muscle etc.

The tightness in the throat, dry throat and cough are all consistent with pulmonary sarcoidosis as opposed to having it in the heart which is rare so try not to worry.

Are you on any steroid treatment and any antibiotics if you are coughing up green phlegm which would indicate that you also have a chest infection?

If you are not on any medication then you really need to talk to your doctor about being started on some so that you can get some relief. If it is medication that is making you feel sick then you should discuss being prescribed an antiemetic. Try avoid taking dairy products if you are coughing a lot because some food stuffs such as dairy makes the mucous more thick and sticky. Things like chocolate also have this effect.

It really sounds like you need to have a long chat with a consultant about your care and treatment sooner rather than later.

June 

5

Hi and sorry that you're in so much pain

The info you sent sounds like almost the exact criteria for disability.  Do you have a hang tag to use the handicap parking?  I'm being serious, that  is the info I received after the doctor declared me physically handicapped. 

Since your biopsy 2 years ago, have they done any MRI's CTscans or ultrasounds to reaffirm your diagnosis of Sarcoidosis?

 Obviously, the ultimate scan is the MRIs...perhaps you could just suggest that you'd like to see if the sarcoid is still active.  That doesn't mean you're all the sudden "cured" of sarcoid, it merely states that you're in remission. 

Since you had a prior biopsy determining you have sarcoid, you'll always be allowed to use that parking hang-tag.  I'm not saying that it's a concern to have that hang-tag but I merely wanted you to know this in case you don't already know.

In any case, you might want to suggest a scan of some sorts.  Who knows if someone might have accidently left something in  the area of concern during your biopsy such as: cotton ball or an instrument of some kind.

I wish you good luck and a prayer is being said for you, evelyn.

frustrated

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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

7

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! cheesygrin 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

frustrated99<<today lol

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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

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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 rolleyes

hugs,

frustrated

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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.

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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.

12

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!

13

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 <as my daughter would say>. 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 cheesygrin 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 smile

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**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 eek

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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! cheesygrin this without the teeth ha ha ha!

16

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

17

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! rolleyes

18

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 lol Thanks again for your help

June x

19

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

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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