Wide spread pain going on 12 years.
Posted , 7 users are following.
I first started having in my stomach then it became harder and harder to walk. I used to ride a bike 21 miles a day... I was fit then.
One day I sat down to have a ham sandwich and just fell over. I could not move and the pain was unbareable. I am a veteran so off to the VA I go. I could not move any part off my body except my right arm. I could not even lift my head.
The VA ran all kinds of test but when they could not find an answer the trainees decided it was time for some abuse. The nurses were horrendous. They had two interns pick me up one day and put me in a wheelchair while I was screaming don't put me in that chair. Then of course they let go. The nurse just continued to yelled. The interns picked me up put me on the edge of the bed and let go. It wasn't enough that the idiots saw I could not sit in a chair they wanted to see how high I bounced.
My dry eyes began while I was in the service but had not become severe until about 2 years after I was out. I told the eye doctor it felt like rocks in my eyes. Now while I am in this hospital and being subject to the abuse of the nurses I am not receiving any treatment for my eyes. They burn something awful and I cannot even go to the bathroom to wash my face.
Two months go by and slowly I am able to lift my head. I am on liquid morphine, tablet morphine and Vicodin. None of this is controlling the pain. The VA decided to have a nerve induction test done but the test failed at my elbows. They chocked it up to radio failure. If I was very still the pain was tolerable.
My body was burning, my feet felt like they were being sliced whiled sharp knives shot out my toes. And at the same time they felt ice cold and dead. I always asked myself. How??? I still do.
My mother is eventually able to come and get me. The VA tried to send my home via airways but I got the plane turned around and did not even know it. I was in so much pain. My eyes were closed... tears running down my face and me praying like crazy that the bouncing would just stop. All of a sudden we came to a stop and I was thinking the Lord for getting me thru it. When I opened my eyes a very large fireman was standing over me. He was asking me questions I could not answer other than my name... that one I got right.
So my mom picks me up and takes me home to Texas. My mother drove me just about every day to the VA. They put me on gabepetin 800 4x a day and I can now mostly control the pain.... For a while. My eyes got worse and my mouth whoa!!! do I need water.
The VA again decides to give me a nerve induction test. Now if you had one of these you know the needle us about 4 inches long and the test is very unpleasant. When the technician gets to my elbows the test malfunctions and therefore it again must be radio failure. A few months later I am sent for my 3rd nerve induction test and again the test fails at my elbows. I believe this means something. One time maybe ok but 3 times no way is that equipment failure.
My nuerologist say I do not have fibromyalgia and when I asked him to please find out what I have... HE said ,"I ran tests, we are controlling your pain what more do you want".
I just moved to Houston and saw a doctor at the KATY VA. She started asking me questions.
1). Yes my eyes are severally dry I have to scrape them in the mornings just to open them.
2). Yes my mouth gets so dry... my tounge sticks to the roof and my lips to my teeth. I need to use biotene spray and toothpaste.
3). Yes I have already lost a tooth
4). OMG how did you know I cannot swallow. Nobody ever asks me that. I have to convince myself I can. Then add more water to my mouth and sometimes I get choked.
5). Fatigue
6). We talked about my pain.
Next thing I know I am being sent to the lab. They took 14 viles of blood and I am to return because the need 26 more. My new doctor thinks I have Sjogren's
Syndrome. Recently I have begun to shake somewhat violently. I noticed around 2016 my thumb would jump back and forth like a nervous twitch. At times I cannot sign my name.
These tremors do not last long. Whatever is happening to me is progressing fast. I cannot drive unless I have gloves and it is a short distance. I have to be careful of what I wear because certain materials feel like needles on my skin. I have gasteoparitis, gerd, and pacreantitis. Many foods I lived to eat now put me in the hospital.
I guess I am here because I just want to know what to expect. If I do have Sjogren's disease I am not sure I want to take the medications I am already on enough. It would be nice to know what I have. Thanks 😊😊??
0 likes, 24 replies
Venita2018
Posted
OMG
1. I'm not a man nor ever have been
2. I only gave background because in 2005 I was diagnosed with autoimmune but when i asked for further testing did not receive it.
3. I am not a troll!!! I just wanted to know that i could come here if it turned out i did have Sjogrens
4. I have dealt with this a long time. I have tried to find ways to tell myself it's ok. God helps me.
5. Things have taken a fast downward turn since 2016 and picking up speed.
6. I have a degree, I used to be a teacher. After I learned to walk again I could only get a job as a janitor and that made me cry every day. Not the job, i was embarrassed by the job, I cried from the pain I was not quite ready to go to work.
I have been a soldier, a teacher, a custodian, a Texas Prisoner Transport Agent, A bus Driver, an UBER driver and a UHC service agent all since 2011.
I do not care what you think of me. I think you are a mean judgemental person. This is not a safe site for information just bullies. I will do my own research.
aitarg35939 Venita2018
Posted
I'm im Austin, Venita. We have a WONDERFUL in-person support group that meets in Round Rock every quarter, next mtg on 2d Saturday in August. Dallas has a bigger group. There may be others. If interested, contact the Sjogren's Foundation in Maryland. Call/email & they'll tell you if there's a group near you.
I just got jumped on in the COPD group for saying that the only way i got off of cigarettes was by leaning on God. I'm right there with you, woman, couldn't get thru any of this without His grace.
shaq26875 Venita2018
Posted
I was diagnosed with SS and resisted taking plaqunil until life became hell ....(including your symptoms of clothes seams and feeling like needles on skin..i wear clothes inside out next to my skin, painful electrical buzzing in feet, driving is painful on my palms as my tendons are swollen and raised etc etc)
?I also have gastro problems which gastroenterologist believes is SS led.
?I know nothing about the USA hospitals but experience of London hospitals.
?My mother had shocking treatment in London hospitals (one of us stayed with her 24/7 to ensure she was not 'abused'...she had COPD, congestive heart failure) the Registrar and consultants were trying to force her to sign a DNR (Do Not resuscitate ) when she refused they wanted us to sign on her behalf !!! there were so many other shocking incidents to other people in the ward, that people would find hard to believe unless they experienced it themselves. I am sure if a patient pays for treatment their experience would be totally different ?
?Before others jump on here to attack me let me say, I am not interested in arguing about pros and cons of the NHS..This was my personal experience with my mother and observing other patients in her ward, having said there were 2 kind caring Phillipina nurses in that ward.
lily65668 shaq26875
Posted
Hi shaq,
I couldn't help noticing your reference to "needles on skin" in your first para.
I've been having something similar for years now, but it's getting a lot worse lately. I can't say I've really associated it with SS, but your post made me think again.
It's not a tingling or pins-and-needles feeling. I know that feeling well, as I frequently get it in my hands and feet. This is something different.
It mainly happens on my back, shoulders, upper arms and thighs, and occasionally in my heels. It's a sudden sharp pain which feels very superficial, apparently in my skin. These pains come without warning, and always make me jump, and sometimes yelp out loud in pain - which is a bit embarrassing in public!
When it first started 10 years ago, it only ever affected the outside of my left heel. I kept stopping in the street to take off my shoe, and even my sock, looking for something that was sticking in me, but I never found anything. More recently, when these sudden stabs in my back and shoulders have started to wake me in the night, I've even wondered whether I was being bitten by something. However, there are never any marks on my skin, or evidence of any kind of insect.
A more recent "refinement" is stabs of violent itching in the same areas, which also make me jump. Like the needle stabs, these only last a couple of seconds, but that's enough to disrupt everything. I've noticed that the stabs of both pain and itching are more common if I'm too hot or too cold, but they can come at any time.
Does this sound anything like what you're experiencing? I really sympathise if it does.
shaq26875 lily65668
Posted
Hi Lily, The needles on skin is I associated with seam on clothing against my skin, mainly neck, back shoulders and chest area and also used to be scalp (I was convinced insects had crept onto my scalp and were crawling around taking nips and at its height even combing my hair was painful...the motion of brush /comb on the scalp) and sometimes heels. The unpleasant 'electrical like buzzing' happened on soles of feet and lasted for a some seconds (though feels like longer) and happens randomly. I read somewhere that lack of B12 can produce this (or B12 can stop these sensations) so I now take B12 daily and the buzzing on soles doesn't happen as frequently. I haven't tested the B12 effect seams on skin (especially heavy seams, or sharp seams) ...I still wear clothes inside out in privacy of home. I always wear socks inside out as the seams feel like they cutting my skin under my toe nails. (can get weird looks in shoe shops if buying trainers or boots and have to wear socks
The crazy random itching also seems to have stopped...don't know if any of this is a year on plaquenil at this stage or B12...though sometimes I do wake up with bloody pin prick scabs where I have scratched in my sleep.....on side of my chest ..and can now comb my hair without pain. The burning tongue also seems to have abated (B12 ? prolonged use of plaquenil?)
?The itching did occur when I was hot now that you mention it and my wrists 'creases' would turn red and itch if I used my hands rigorously like scrubbing a saucepan (probably heat and friction?)
?I am now thinking of stopping the prednisolone ..hasn't really helped with the raised tendons on my palms.
?Maybe the B12 has the placebo effect? But I am not willing to stop it and test that theory
lily65668 shaq26875
Posted
Hi shaq,
That sounds nasty!
I identify totally with the thing about wearing socks inside-out. I've done that for years, and have had to abandon some items of underwear for similar reasons. So far, I don't have to wear any of my outerwear inside-out though. And yes, I also wake up with scratch-marks all over my shoulders, throat and chest. Annoying, isn't it?
I had terrible soreness and hypersensitivity of my scalp for a year or so, but fairly recently started wondering whether it was down to an allegedly hair-strengthening product I'd been using for a couple of years. I have pathetically thin, fine hair, partly because I inherited this from my mother, but also because of five years of untreated hypothyroidism back in the day, so was willing to try anything. Anyway, having stopped using this product three months ago, I must admit my scalp seems a bit less sore, so I guess I've nailed that one at least.
I don't think B12 deficiency is my problem, though I'm glad to hear it's helped you. I used to take a B12 supplement but my GP told me to stop as my folate and B12 levels are always very high anyway - ditto haemoglobin and erythrocytes. (He's not entirely sure what's going on there.) I can't say I've noticed any difference either way since I stopped taking it a year ago. In any case, I get plenty from food sources.
You're right - burning tongue is a common symptom of B12 deficiency. Fortunately I don't have that problem, so I suppose I should be grateful!
It's started to occur to me recently that there's a fairly good correlation between the skin stabbing and itching and the areas where I suffer tendon and/or muscle pain. It's not true in every case, but it does seem to be more than coincidence. I'm wondering whether this is some kind of peripheral nerve response to underlying problems, though I've never heard of this before.
If you do decide to stop the prednisolone, I'm sure you know to taper it slowly under medical supervision, even if you're not on a high dose. My father was put on very high doses when he was in the late stages of cancer, in spite of having a long psychiatric history. When he got briefly sectioned under the provisions of the Mental Health Act, the GP panicked and reduced the steroids far too quickly. That was more than 30 years ago, but I still remember the agonies of cramp he suffered.
shaq26875 lily65668
Posted
Hi....my prednisolone is only 5mg a day...and only prescribed until I see rheum for a follow up which is now a few weeks away. But if I do stop before seeing her I will taper off. I have also now taken 3 doses of methroxocate (7.5 mg weekly) but still hasn't stopped the raised tendons on my palms ....(what I have got now is a nasty cold with a burning throat) ....I now doubt whether the palms tendons issue is due to SS...maybe its just old age (66 yrs old) and being thin makes them more raised and therefore hurt when driving with a very hard steering wheel ??? I might actually ask her that though she puts everything else I mention to 'old age'
shaq26875 Venita2018
Posted
I also meant to add that for past 3 weeks I also take methroxacate and gupisone (steroids) even though I haven't tested positive for RA...so I am hoping for my symptoms to abate . My follow up with rheumatologist is 5 weeks away. so hopefully will come off the methroxacate and steroids if symptoms have gone.
?I did ask her about gluten free and dairy free diet ..she said that it helps some people with painful joints but SS still has to be managed (with meds) before joints and tendons become permanently damaged.
?online research I found some sites which say ...it is progressive and some sites which say...flares come and go and no permanent damage done ..(I did that search 3 years ago when first diagnosed maybe opinions have changed.) All I know is that I don't want to go through the hell I went through for 6 months when I stopped the plaquenil