Hi, I use to have severe wrist pain, I had to wear a wrist brace the heavy duty one… But it didnt helped, my rehumy end up putting me on Rituxan and it help alot… Im sorry you going thru this, hope you get better…love Dunnia
Thank you all so much for everything you have given to me on this subject, Sarah, you responded beautifully, gave me much information. My GP is certain, as is my DC that this is much more than mild CP. The DC thinks I have RSD, but that should have showed up on the nerve tests, (although as bad as the Sciatica is, you would think that would have showed up) I do have many, if not all of those symptoms, but Rheumy says no, GP says no to the RSD. Amazingly these men all work very well together, but do not always agree.
The DC never liked the diagnosis of FMS, but did agree to the Overlap Syndrome, that was the first diagnosis. The DC also was in agreement of the Rheumatologist's definition of Fibro as a condition, not a disease. (will explain fully if anyone interested) If I can recall correctly the diseases on that list were
SLE, RA, mixed connective tissue disease, Sjogrens, Scleroderma, there are 2 others that are just not coming to mind. My full dx is Psoriatic Arthritis (spondylitis which mainly attacks spinal cord and SI joints) Secondary Sjogrens, Raynaud's Phen. tendonitis. Spinal stenosis, Myofascial pain syndrome, Degenerative disc disease, degenerative facet disease. Surely I have forgotten a few...
The dilator meds do not really help the Raynaud's, seems odd it could be that alone causing it when there is no exposure to cold needed for this to be so extreme.
They continue to look for Lupus and MS. Who knows what is from what there is so much wrong, who can differentiate, surely it needs to be taken in steps, so many layers of problems.
Terri thinks the Ps"A and Secondary Sjogrens are battling for upper hand, as her Rheumy told her this about her two main Autoimmune diseases, which I believe are Lupus and Secondary Sjogrens.
It is hard to even say all of the Autoimmune diseases my grandmother had, knowledge was limited then, I know she suffered terribly. I don't seem to have any of my late Father's family ills, but all of the crippling AI are surely extreme on my Mom's side. She is 80, and her SI joints are starting to really bother her, but she is healthy, takes no meds, had a successful back surgery that we think she had due to the care and lifting of my Grandmother in her final days.
Well, I will close this book. Any other info would be greatly appreciated.
If I had my way, none of you would even have a hangnail.
Hugs,
SK
Dear OCgal and Dunnia,
thank you for your response, it is always so heart wrenching for me to know of young people suffering. Dunnia, so glad you found relief with Rituxan, I see it is also a Biologic, questions are will they give it to me without a full diagnosis, and will they give it to me considering I already am taking Enbrel, also a biologic.
I surely am not as knowledgable about Lupus as all of you, though a fast learner, but RA seems to often accompany Lupus.
OCgal, It does not feel like arthritis alone, unless it has attacked the tendons and ligaments as well as the cartilage and bone. It is systemic, so it hits every cell of our body!
thank you again for responding, I wish you WELL,
Hugs,
SK
I dont think they can give you both but you can ask your dr to switch you to Rituxan… They use Rituxan for RA more than lupus so you might wanna try it…and dont worry about me beein young and sick my friend, god has a reason for everything and all I can do its beleive on him…love Dunnia…
Dear Dunnia,
I doubt it too, but would Rituxan stop the progression of the Psoriatic Arthritis? What a mixed up mess. These Rheumatologists surely have their hands full, don't they?
Thank you for your help, I will have this in my notes. Your faith is wonderful, God's speed to you!
Hugs,
SK
SK,
Sorry to hear about your wrists. Lots of people take for granted the use of their hands. Simple things can cause such pain. I hope you find relief soon, I will pray for you.
I go through cycles with my wrists but not as bad as yours. My neurologist DX me with mononeuritis multiplex and I have Fibro and Psoriasis. I find they flare together - a mutiny by my body! Until 2 weeks ago both my hands have cycled for 2-3 years of being split open from the psoriasis. The numb wrists hurt but are numb - try explaining that to anybody else -they think we're crazy whiners. At least with the psoriasis they could see how awful my hands were.
I alternate using Biofreeze and Capsasian for my wrist pain and numbness. (along with Pain meds) The capsasian has to build up and some people can't take the heat, but it does help me with the nerve pain.
Right now is the best my hands, wrists and other Lupus "stuff" has been in several years, thanks to prednisolone. Fibro is a little more pronounced. I am still so lucky to have this relief. Its like a mini miracle to use my hands nearly pain free. No long bleeding gashes! No peeling! No weeping red palms! No scales! My son touched my hands and said "now you hands are like mine" it was so moving for me to know he noticed and cared.
Please know we notice and care for you too. May you sleep well tonight.
Lisa
Thank you Sunny,
for your story and words of encouragement. tonight, the morphine helped my wrists, probably for the first time, I hate taking it, but may just have to get used to it, will not drive taking it, and surely do not want to be on it when I have the grandkids.
I will surely reference your diagnosis as I am unfamiliar with it, but very interested in researching this.
Now, sleeping will be the real test! good night to you too!
Hugs,
Susan
Hi SK, i sometimes have this in my wrist - i can't hold nothing for periods of time without dropping things . I deal with he pain from this by placeing my hands and wrist on the heating pad - it helps most of the time !!! smile hope that you haven't torn any tendons... I have 2 aunts that have torn tendons and they say that is so painful .. Hope that the doctor have some news for you on your visit next week .... Beverly L.
Dear Beverly,
This wrist pain has gone on for years, 6 or 7, getting progressively worse, would the tendons have healed by then? Maybe not! I finally did get some relief Friday night, took the Opana, but I wonder if barometic pressure could just heighten it, whatever it is I believe the weather makes that worse, just like it does my back!
Hopefully I will get some answers Friday without 100 new tests!!!
Thank you all for responding to me, hoping you all find relief from your pain.
Hugs,
SK
I hope you've had some relief today. Pain is wearing. Just know I care.
Hugs xx
Faye
Thank you Faye,
I took Opana on Friday night, and amazingly it has been rather tolerable, could also have been a change in barometric pressure, now we have the baby, and even though my husband tries to do most of the lifting of him, I still have to, so they are starting to thump again, but he is just so worth it Faye! He is taking one last ride on the tractor with Pap right now, and then I put him in the tub for a bath and some play time. I have a little oak stool I keep in there for him to reach the sink, so I sit on that to bathe him, but the bending is still tough on the back!
My daughter-in-law usually has him while my granddaughter works, but they discovered a large tumor on her colon, she goes for a colonoscopy on Thursday, so I may have them both for a day or two later in the week. God knows it doesn't sound good, but trying to stay positive. Always a challenge, a heartache, Faye! Gotta take care of these dear little kids, pain or no pain!
Hope you are having a good night and were able to play your piano and organ!
Hugs,
SK
Hi SK, hope that Friday goes well for you also !!!! smile Am praying for you ..... Keep me posted ?????.....Beverly L.
SK said:
Dear Beverly,
This wrist pain has gone on for years, 6 or 7, getting progressively worse, would the tendons have healed by then? Maybe not! I finally did get some relief Friday night, took the Opana, but I wonder if barometic pressure could just heighten it, whatever it is I believe the weather makes that worse, just like it does my back!
Hopefully I will get some answers Friday without 100 new tests!!!
Thank you all for responding to me, hoping you all find relief from your pain.
Hugs,
SK
Thank you Beverly, I will surely let you know as soon as I get back, I am promised at least a 2 hour wait, but he is worth every mile to get there and every minute to wait!
Hello Susan,
Sorry i've not been on to see your thread mate, i do apologise.
With your wrists there's an high possibility of sjogrens besides your arthritis but both my sisters have osteoporosis and they had both wrists done on carpel tunnel....they never mentioned numbness infront of me, just severe pain...it helped my eldest sister but not kim who as lupus now.
There's a large possibility it could be that as lupus alone causes carpel tunnel...i just hope on your appointment you can find out there and then what's causing the problems.
Love you loads mate. xxxx
Hi SK, everything will be all right! .... talk with you later .... Beverly L.
SK said:
Thank you Beverly, I will surely let you know as soon as I get back, I am promised at least a 2 hour wait, but he is worth every mile to get there and every minute to wait!
SK. I also have negative blood work for SLE. But I continue to have symptoms for it. I am in the same boat with my neurpologist in regards to my kidneys. The doctor does not want to due a kideny biopsy yet, because of the why i react to evaise treatment to things. Shy of doing a kidney biospy I will never now either. I don’t want to put myself in harms way.
So I understand what you are going through.
Deenie
SK said:
Hi Dewing,
So sorry you have to go through this, it is that way with me, and sometimes just brushing my teeth is agony. My blood work is not showing SLE, I have had 3 brain MRIs now, my GP and DC are not wild about the spinal tap. I go down hard with any further invasive action to my back. Asking my GP if 'HE" would do the spinal tap, he backed off immediately saying they no longer do the x-ray guided tap, and he would never subject a person to that danger, especially me after seeing what PM injections and a mylegram did to me.
So if I have SLE, I may never know, I do have many of the symptoms, it was his first suspicion.
Thank you all for responding.
SK
Hi Dewing,
I understand your reaction to invasive tests, proceedures, treatments. I have become that way even with my last three acupuncture treatments, so that is saying something. The myleogram was the very last straw with that, they take a needle and harpoon it into your back to inject the dye. Problem with this and PM injections is they never get me numb enough, and I jump, clench, draw up, scream, so of course that makes everything worse!
They will have to come up with something else besides that again, I passed on the spinal tap for the same reasons, so I can just imagine what a kidney biopsy would do! Whew!!
Honey, I hope you don't have to go through it, but we can say NEVER AGAIN, and down the road in our lives, find we have no better choice!!
They all need to come to some realization that we are 'one unit', and need to treat us as one!!
Don't get me wrong, I already have 3 autoimmune diseases, so I am past the herb and cleansing stage I went through when medical science and Doctors did not know where to go with me, you can buy it by the truck load, but these are serious diseases, and need serious treatment and meds, so we are beyond all of that alone.
By the time we are fully diagnosed, we are in trouble! That has to change!
I hope that you can get well enough that this does not even have to be looming over you, that alone can make you ill at ease or just plain ill. We have to hang onto something and get through it.
Wishing you the very best,
SK
Hi Deenie/Susan,
Your both showing signs of SLE.
1st of all Deenie vasculitis comes with SLE plus your tumid lupus as you know is linked to DLE which is a large majority of the time is linked with SLE.
2nd of all Susan your fibro is'nt connected to Lupus but your sjogrens is and also your Raynauds.
So in general your bloods just have'nt shown positive at the moment but there's still strong signs for treatment anyway on all conditions mentioned.
Love you both Teri xxxx
I would ask about TOS- thoracic outlet syndrome. It’s when your first rib and collar bone press together pinching off the nerves n blood vessels n arteries. There aren’t many surgeons that perform this procedure n it sounded crazy to me but it has changed my life! For the procedure they removed my entire first rib and part of the chest muscle. I was on pain killers n muscle relaxers for about 18 months before they could figure out what was causing so much pain. It’s different for everyone but for me it caused horrible neck pain that wraps around my face and into my eyes and causes pain in my shoulder, shoulder blade, the outside half of my arm, my wrist, half my hand n my pinkie n ring finger. It can ache, hurt, go numb or just cause horrible pain. I have an awesome pain tolerance but this isn’t always controllable. Sometimes the percocet, dilaudid n strong muscle relaxers can’t even touch it.
Deanna
This is just to crazy! I had TOS surgery in August and in October of 1992. My first ribs on both sides had to be removed. Oringinal mine was also very hard for them to diagonoise. It took seven years for them to figure it out. Once they figured it out, it took six months to find a surgeon. I was very lucky to find a thoracic surgeon here in Miami. His name is Alan Livingston at the University of Miami. I was losing the use of both of my arms. I was losing both the blood and nerve supply because the brachial plexus was been punched off bilaterally. i I knew the night of the first surgery when my first rib was removed that I was fixed. So I waited two months and had the left side done. My situation was from a car accident that caused my anatomey to shift in my upper body. Not from the most common cause of an additonal rib (cervical rib).
Just let me say I have only known two other people that have ever had this surgery until this morning and I open my page to find your post. That is just too weird. I remember the nursing staff at the hospital telling me the day before the surgery that they did not know what TOS was but yet had two patient scheduled for the surgery the next day. That was me and a man, who was a firefighter. The other person was a friend of one of my doctors who connect us together so that I could couch her patient through the diagnosis and surgeries.
My wrist pain and hand pain has been already diagonoised by two doctors. One being my rhumy and the other being an orthopedic surgeon that I have been going to for 30 years. The orthopedic doctor is the doctor that workers comp sent me too after my car accident and he is the doctor that figured out that I had TOS. Like you I have a very high tolerance for pain.
Back in the early 80’s my doctors where testing me for lupus, because of all my symptoms and it took until 2010 to get the diagonoise of tumid lupus with a positive skin biopsy. I am now having SLE symptoms but I test negative with my blood work all the time.
I think now we will be friends in lupus and in TOS. I am sure my post will blow your mind like your post did to me this morning.
Deenie
Deanna said:
I would ask about TOS- thoracic outlet syndrome. It’s when your first rib and collar bone press together pinching off the nerves n blood vessels n arteries. There aren’t many surgeons that perform this procedure n it sounded crazy to me but it has changed my life! For the procedure they removed my entire first rib and part of the chest muscle. I was on pain killers n muscle relaxers for about 18 months before they could figure out what was causing so much pain. It’s different for everyone but for me it caused horrible neck pain that wraps around my face and into my eyes and causes pain in my shoulder, shoulder blade, the outside half of my arm, my wrist, half my hand n my pinkie n ring finger. It can ache, hurt, go numb or just cause horrible pain. I have an awesome pain tolerance but this isn’t always controllable. Sometimes the percocet, dilaudid n strong muscle relaxers can’t even touch it.