chronic pain from sarcoid - treatment

I'm really, really sorry to hear that you're going through this.

I'm not sure what it can be; I also had a pneumothorax and it can be painful; but not like that.

I also had some lung pain because the TB infection I had before attacked my pleura (however, the pain went away after I ended the treatment). I didn't find painkillers to take away my pain. It was better for 1/2 - 1 hour, then the pain was back....

Usually, sarcoidosis and infections in lungs don't cause pain...the only explanation I can think of (this is what my doctors told me when I had lung pain) is that, whatever it is - be it an infection, or sarcoidosis, or something else - it has reached pleura...

As far as I know, acupuncture may work, but you need a really good specialist...What you can do is to call an (or two, three) acupuncturist(s) and explain the symptoms; only s/he (they) can tell you if acupuncture may work or not...

Wishing you all the best,

Magda

Really, really sorry to read your post.

I have stage 1 sarcoid which I have been told is not severe enough to be treated with medication and and at present I am being treated for acid reflux - had umpteen tests and taking lots of pills but I still have chest pain/heartburn pain everyday. My story is long - I could write a book!

Anyway, I wanted to let you know that I have been having acupuncture for the past 13 weeks and although I am not cured I do feel it has helped - I am sleeping better and certainly dealing with life better.

Anything is worth a try!

Best wishes,

Lynne

Hello

My regards to your wife and you too are suffering because she is suffering. It feels like you are at your wits end trying to bare her pain too.

The level of pain she is in doesnt sound normal . I have had sever Sarcoid and been treated. my lungs hurt and that means my upper back and shoulders are painful. I have chronic pain in my lower back radiating down my legs and sometimes halts me walking. pain killers dont do anything

Ive had acupuncture in the past and it helps. Ive seen a cranial osteopath in the past and Im seeing him next week. This is very very gentle and seems like they dont do much but its fab. It realigns all your skeleton. I would ask the Hospital for a 2nd opininion and a referral to the Pain Management clinic. They are very up to speed with things, meds, techniques etc. I 1st went to pain management 25 years ago when it was a new concept in this country and I was part of the clinical trials. They help manage the pain if it doesnt go. 

Dont suffer in silence. please dont be offended by what i say, its totally sincere and I say this because I see it happen to my Dad who is 74. Because you are 'old' and I know youre not but you get my point, they will patronise you, fob you off, put it down to age etc, talk at you, treat you like you are stupid. My dad has alot of conditions. His last assessment had a written report about him and there were 14 points that were factually incorrect. It talked of him having an examination and the Dr noticing clubbing to his hands - he never took his gloves off!. He noticed the hernia on his stoma. My dad sat down didnt take his coat off and the stoma is covered by his jeans jumper and coat. in fact no examination too place They are just two examples. My point is they are not Gods and they dont always know. When it comes to Sarcoid they rarely know

I appreciate its hard to ask for help. However there is no point in suffering in silence. Perhaps you could chat to your GP and tell him/her how its affecting your life, how youre the carer and need support to help her. They will do something PDQ as they dont want you to go down as its going to cost them money!!! 

Im sorry if Im so blunt, Im trying to help and put a practical point across of different tactics to help you. I hate to see people struggle and people take advantage. I will shut up rattling on now and I hope things go well for both of you

Take good care and lets us know how things go

Kindest Regards

Nicola

Hi Evelyn

I am so sorry to hear of the pain and the disruption to your everyday life this illness has caused for both of you.

Besides having sarcoid I am also the primary carer for my mother in law.

Thelma is 85 had a major stroke and many complications caused from the stroke.

I take on and support what Nicola said in her post. 

"When it comes to Sarcoid they rarely know

I appreciate its hard to ask for help. However there is no point in suffering in silence. Perhaps you could chat to your GP and tell him/her how its affecting your life, how youre the carer and need support to help her. They will do something PDQ as they dont want you to go down as its going to cost them money!!! 

Im sorry if Im so blunt, Im trying to help and put a practical point across of different tactics to help you. I hate to see people struggle and people taken advantage of. I will shut up rattling on now and I hope things go well for both of you"

Sometimes doctors feel that if they tell that everything is all right a lot of people just accept that and go away feeling better.

There might be other issues in Evelyn's health. Afer so many weeks in hospital you would think they would have looked at all of these things. But they do not.

I would be starting again at ground zero and having a very long talk to your family doctor. This level of pain is unacceptable.

Hope things work out OK for you both

Regards

Tangles

Hi, I know this post is a year old but I thought I'd make a suggestion.  Any chronic pain which fails to respond to the standard opiates or anti inflammatory drugs screams NERVE PAIN.  Which is very difficult to treat.  With your wife's Sarc symptoms it might not just include her lungs having fluid, it also invades the tissues in the body.  This fluid can represent inflammation to that area also which then irritates the surrounding nerves and can be excruciating.  Try talking to her health care providers about nerve blocking medications like lyrics or Gabapentin?  They have helped me immensely.  They can take time to work, but when they do nothing can compare.  She needs to drink loads of water too, and I can see she is on frusimide which is too flush out as much excess unwanted fluid in her body. This can be very hard on someone in chronic pain having to get up and down to the toilet.  Have a commode beside the bed.  Also using an ice pack NOT A HEAT pack on the most painful spot will give her instant relief.  It's never nice in the winter to have to think of using an ice cold compress, but once she feels the pain relief she won't go back to heat.  Well I do hope she has improved, all the best Cheers.  

My wife has had sarcoid for 16 years it has got worse over the years to the point she had to have her spleen removed. Her pain levels has got a lot worse. They tried every pain killer known to man.The only one that works well is an old narcotic called talwin. She has been using it for years and work well for her. She takes it and is still able to drive and function normally. It is expensive so u need insurance to afford it. She takes 2 every 6 hours wich is 240 per month. At $750.00 per month. You can get a week supply for $112.00. I hope u are able to try this it does not take all her pain away but makes it manageable so she can enjoy life.