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Sjogren's Syndrome Support

What no one wants to Hear

I went to my pulmonologist/GP;s office today. I described to him horrific abdominal pain that has wakened me for the past three days, multiple times each night I also described the numbness and itching and the acid burning sensation in right leg....He said, "I could send you for a scan....but you and I both know that is a waste of time....Your former scans were so bad I doubt that there is much else to be gained by looking at new ones." He told me sadly,"both of these problems are caused by your messed up spine....but the DDD and the rediculopathy, and the facet damage and the spondyliltis. Nothing can be done. All you can do is go home and rest" That's IT???? park your arse in your recliner and wait to die in the most miserable manner possible. I've been crying off and on all day. I knew this day was coming....but I did not know it would be so soon.

Although truth be told, I'd had the tiniest bit of activity this week. I went out to eat and I stopped at Walmart (using the stores and my daughter's boyfriend taking stuff off the shelves for me an dputting it all in the car and bringing it in the house.... I was EXHAUSTED by that. I went to Prayer meeting that night. I opened in prayer ...leaned over and fell asleep for the entire remainder of the meeting. Today at 8:30 in the car goign to my doctor, I fell asleep and made my driver miss a turn since I was guiding her.

I have not had the strength to cook any kind of a meal in as long as I can remember. I'm useless.

I'm so sad. Is this really how my life will be for as long as it lasts?

Dear Cyn,

I have been struggling from the bed to the couch myself, I don't even have the energy to get angry or depressed, but I understand. My GP just says it's the autoimmune, and with the multi systemic AI's we have it's just too much! The war raging within us is just devastating sometimes. I am in the phase where I cannot get enough sleep and rest, everything seems like a huge burden to me at present.

I also have the spondylitis type of PsA, with DDD, and facet degeneration, and of course scoliosis and spinal stenosis. The entire assortment of ache and different types of pain are ever present and the physical dysfunction and crushing fatigue is more noticable every day!

I'm not quite where you are, but well on the way, and close enough to really 'get it'!

My heart goes out to you, girlfriend.

Wishing you well,

SK

Thank you Susan. I DO know you "get it".....This disease is nothing short of evil. I think Satan himself concocted the recipe of illness we share. I've been the same. Exhausted beyond belief. and then night times are broken up .....by terrible LRQ pain and a cat who won't leave me alone....oh and the burning, ITCHING thigh...doing all of that while being completely numb. Go figure.

I went to church on Wed. REALLY pushed myself because pain was brutal and I was tired. I got there. Opened the meeting i n prayer and promptly leaned over and fell asleep....for the WHOLE meeting! I was mortified but they were graciousl. I fell asleep in the car on the way to the doc today and because my driver didn't know where we were...I missed tellign her to turn. LOL..Fortunately it was easily remedied once I woke up.

I have new pain in areas not before painful....I get no help at home and no sympathy. No one will even talk to me.

well Ill let you go....thanks for the empathy.



Qadosh2him said:

Thank you Susan. I DO know you "get it".....This disease is nothing short of evil. I think Satan himself concocted the recipe of illness we share. I've been the same. Exhausted beyond belief. and then night times are broken up .....by terrible LRQ pain and a cat who won't leave me alone....oh and the burning, ITCHING thigh...doing all of that while being completely numb. Go figure.

I went to church on Wed. REALLY pushed myself because pain was brutal and I was tired. I got there. Opened the meeting i n prayer and promptly leaned over and fell asleep....for the WHOLE meeting! I was mortified but they were graciousl. I fell asleep in the car on the way to the doc today and because my driver didn't know where we were...I missed tellign her to turn. LOL..Fortunately it was easily remedied once I woke up.

I have new pain in areas not before painful....I get no help at home and no sympathy. No one will even talk to me.

well Ill let you go....thanks for the empathy.

Sorry for the repeated info. Brains are mush

Qadosh, Its shocking and scary that a doc is saying there's nothing to do but deal with it. I am sad for you too because if others can't empathize, they aren't helping you fight. Glad you checked in. I wish I could help but sending gentle hugs and warm thoughts.

I'm sorry to hear you are struggling so much. It's hard to believe when there is so much pain, but there will be better days. I've had those bad days, but some things have later been found and resolved, so don't give up hope - if there is any way possible, perhaps find a new doctor who is a little more helpful.

For myself, I always have my partner accompany me to doctor's appts and sometimes that makes a big difference in how they behave - so perhaps you could ask someone in your prayer group to be an advocate for you in appointments. It's just a relatively small commitment but can make a huge difference.

For what it's worth, people who are going through similar challenges really get what you are going through, so you are not alone. Don't give up hoping. Yes, our lives are changed from what "used to be" but I find if I focus on much smaller goals I can find fulfilment and satisfaction most days. Cooking isn't high on my list of satisfaction, but find the things that matter most to you and put your energies there. Even if it's just half an hour a day, you will be amazed what a difference it makes.

I know it's rough not sleeping due to pain. Don't be shy about taking afternoon naps to catch up. I know all the professionals say don't do that, but honestly, I can't function without it.

Take care!

Jane

hi Jane,

recently I made a list of three or four "goals" for my day. I was frustrated every day to find that I only could do one, two at most....and rarely. Fortunately my husband and daughter are going out to dinner and then to Walmart....so I don't have to cook dinner. I DO really REALLY need a shower so that will be my goal for today. And I'm hoping if I get that done, that I will have enough energy to go to church in the AM. I hope SO much that Idon't fall asleep throughout the sermon like I did at prayer meeting on Wed.

My GP has been my doctor for 21 years. He has saved my life numerous times. He's an excellent doctor and very well respected....This is the first time that he has really made any statement about the severity of my AI illnesses....but I know he recognizes it because when I was in the hospital a year ago he wrote a long note in my chart about how disabled I am by these diseases.

I do not want another doctor. His telling me to go home and rest and not bother with all the doctors who can't help you, take your money and wear you out making the trip to see them was his gentle way of saying...."We've done all we can do".

I too rest whenever I get the chance. even in church LOL....(I do try not to there but it's a real struggle)

I wonder what my rheumy will have to say when he sees the condition of my hands despite this new med. I wonder if he will wash his hands of me. My liver enzymes were way high in the last three labs. He said this med is the only one which does not effect the liver.. ...and since this one isn't working????

I don't know. and I'm too tired to figure it all out. I'll just keep on waking up in the morning, crawling into my recliner, and praying for endurance. At some point the Lord will beckon me and I will be VERY happy to go running into his arms. Until then, I'll keep plugging away and trying to endure.

I don't blame you, re: the doctors. I'm glad you've got a good one. My GP is hopeless, and most of the specialists think I'm not severe enough to worry about - come back when your kidneys are shutting down kind of thing. So at the moment, like you, I don't spend any energy on going to doctors - it does take a lot out of you.

I try to set just one goal a day. I find if I set more than one I get into a wheels spinning kind of mode and can't do anything - it's like my brain fog combined with OCD just makes it too difficult. Doing one thing is much more realistic when you are having a difficult time. Some days that may be too much too, at which point I say tomorrow is another day!

Ultimately being as kind and gentle with yourself as you can is the most productive thing to do. When I stop beating up on myself, I always have a better day.

I am not trying to tell you what to do - just suggesting what helps me, but you can take it or leave it with a grain of salt. :)

Sounds like having a rest and a breather is the kindest thing to do right now. Watch a movie or listen to some music you enjoy. <3

Take care,

Jane

This file is CURSED. TWICE I answered your post and both times lost it. I know when I"m whupped.

Have a good night Jane, Susan, and Enjoy LIfe....sleep well-- no pain.

Q

blackbirdatnight said:

I don't blame you, re: the doctors. I'm glad you've got a good one. My GP is hopeless, and most of the specialists think I'm not severe enough to worry about - come back when your kidneys are shutting down kind of thing. So at the moment, like you, I don't spend any energy on going to doctors - it does take a lot out of you.

I try to set just one goal a day. I find if I set more than one I get into a wheels spinning kind of mode and can't do anything - it's like my brain fog combined with OCD just makes it too difficult. Doing one thing is much more realistic when you are having a difficult time. Some days that may be too much too, at which point I say tomorrow is another day!

Ultimately being as kind and gentle with yourself as you can is the most productive thing to do. When I stop beating up on myself, I always have a better day.

I am not trying to tell you what to do - just suggesting what helps me, but you can take it or leave it with a grain of salt. :)

Sounds like having a rest and a breather is the kindest thing to do right now. Watch a movie or listen to some music you enjoy. <3

Take care,

Jane

Just to know that there are people who really understand because they are going through it themselves is a blessing.
Just a few minutes ago my husband was begging me to go out to eat several times and I told him I would love to but I just can’t. He says I’ll drive you around and you won’t have to do anything and he doesn’t understand that I can’t even do that.
I hate this disease.

Has any one looked at stem cell therapy for regenerating the cartilage in the spine. It has had some very good results in both trials and treatments in knees and onther joints I don't know about the spine and facet joints but the cartilage is the same?

facets are openings in the bones of the spine...in the vertebrae through which nerves pass. With arthritis the openings get smaller and smaller until they pinch off the nerves completely. I don't think that cartilage plays a role in this. I have heard of them putting in artificial disks however....which would provide needed padding in the spine. This is more for DDD than for arthritis however.

Hi I know the anatomy of the body well - I've cut quite afew open.

The facet joints are the gaps between the small bony protruberances that stick out at 89 degrees from the spine and they stabilise the spine and between them are synovila joints both sides lined with cartilage and withfluid between.

If they are damaged they touch which hurts and also closes the distance between vertebrae and this is what causes pressure on the nerves.

Yes there have been some success with atrificial disc replacements which could help increase the distance and reduce the pressure.

I hope this helps make sense I need to draw to show you better.

I don't know enough about your total disease other than it sounds horrible ai was just hoping that it might offer some reflief. It is also possible that total stem cell therapy may offer something for the total condition ask your nice doc he won't know but should be able to look things up.

Best Wishes and hugs M(Assybish)

Qadosh I can totally understand when it feels like your md is writing you off without giving a solution. To feel like there is no hope of having any quality of life. Regardless of that you are a survivor. You still get out of the house and go shopping and to prayer meetings.
Blackbird mentioned setting one goal a day. Wish I could stick to that. My first goal is making it to my feet without falling in the morning. My second goal is to take care of the pets (can’t trust them to pour their own food). Third goal is to make it to work for three hours and my last goal is to make it back to my bed when I get home.

We tend to try to hold ourselves to our old standards of being the strong woman who handled everything but this disease is a roadblock. I am amazed and proud to know you because you show by example that if there is a will there is a way.

Hang in there.

If you do all those things, Cassi - that's 4 goals met, and I'm duly impressed! :)

Well said, Cassi!

You know Cynthia, early on in my illness, my GP and I were not looking past the car accident, and he got so frustrated after all the exams, tests, referrals to teaching hospitals, that he told me he just did not know! He was more frustrated than I had EVER known him to be.

I asked him to think about it, that I would give him some time, make another appointment, and when I got back, I had the first step diagnosis onto autoimmune, as overlap syndrome. He told me that it meant that I had several symptoms of several different autoimmune diseases, and that in time I would have one or all of them. Though what he thought was RA, turned out to be PsA, and I did not have Scleroderma, but he was in the ball park. It took time to get to the right Rheumatologist to get it sorted out.

Point is, hopefully he will think about it and perhaps have something new to offer next time! A new med may come about, or perhaps a new surgical procedure.

Where there is life, there is hope.

Wishing you well,

SK

Cassi, I just re-read your response and was sorry not to have responded immediately. I do try to get out of the house at every feasible opportunity. If I turn down a trip out of my house, you will KNOW that I'm a step away from death. Yesterday I made the hard decision to go to church. Hard because I felt like complete crap. Hot and then cold flashes. weak, body temp plummeting and then soaring. I had no idea what was wrong and Istill don't. I crawled in to my recliner at church and stayed there....did not get up for the "meet and greet" or for the worship songs. But slowly I began to feel better and by the time church was over I felt tolerable again. I have no idea what was plaguing me but was just glad to see it go. I even felt well enough to go out to eat after church with my friend and driver, Ralph.

where there is a will there is a way.

And where there is life there is hope.dd

And I'l add on--Faith is the evidence of things unseen; the substance of things hoped for.. ...

Life, will, faith all work together to make a way our of the impossible a will, there is life and hope

God bless each one of you here today. I wrote a blog post that may interest you . Click on the words "Labor Day"

Labor Day