Anyone else?
Hi SK,
I have been diagnosed with Raynaud's Syndrome several times, but I'm not sure it's an accurate diagnosis. I also have Ehlers Danlos Syndrome. I believe Raynaud's Phenomenon is a more accurate dx and that it is part of my EDS, but who knows for sure? Raynaud's and Sjogren's very often occur with auto-immune arthritis like PsA. My Raynaud's is not severe as long as I am careful not to use beta blockers for blood pressure control. Are you having problems with them?
Hope you are feeling well today.
Hey BF,
No problems with beta blockers, except that I do not notice them making any difference at all. Rhem told me to only take them when needed, but notice no difference, even if I take them for weeks, so why bother. What issues are you having with betas?
Winter is very hard on me, and sometimes I have to wear gloves in the summer to shop for frozen foods, it happens so quickly, just grabbing a bag of veggies, throwing them in the cart, and my hands and wrists are screaming. Rhem said the Sj is secondary to the Ray. My fingers and sometimes hands have always turned white and ached in the cold, but became intolerable in last couple of years, that said they feel like they are hammered sometimes when there is no cold exposure, that is why DC says RSD.
Wow, that EDS sounds like a nasty one, what are they doing for you for that?
I have the Phenomenon, didn't know there was a syndrome version. Okay, I see the vibraton factor is the difference. I did know that people who have operated jack hammers for a living suffer terribly, just didn't know the medical term.
These autoimmune diseases always seem to come in groups...just what we need, clusters of diseases!
Not sure what is going on with me past few days, waking soaked...yes the weather has warmed, but still cool enough at night that this should not be happening, and since I sleep in shifts I notice it is not just a single incidence at night, but multiple incidents. I have gone through this before, like your body continues to throw off a fever, yet you have no fever.
So how about you, feeling okay these days?
SK
I have been told I have Sjogren's. I wake up with this terrible pain in my eyes & could not open my eyes. My eye doctor gives me restasis & that seems to help some when I can get someone to put the drops in for me.
Hi ELizabeth,
I tried that years back, it was too much burn for me, I just buy lubricating eye drops and even use water sometimes when they start to feel too gummy from those. Sjogren's reaches a lot further than the eyes though. I thought it was just the meds drying me out. My GP had the sense to test me for it, first time it came up as a 'false positive' on blood work, next time was positive. It was the very first thing that confirmed that he was going in the right direction with the diagnosis. Can you imagine what spins through their mind as we tell them our ills, especially if there is not an obvious sign?
Hope the drops stay good for you, and that you can get help with them more often.
Hi SK,
My blood pressure is all over the place these days, and they are trying anything to get it under control. One of the things is Beta blockers. I don't like them as a class of drugs, and they do make my Raynaud's symptoms much worse. Yes, shopping can be a true pain! Any cold environment for my hands sets them into the vasoconstriction cycle and it does hurt like heck. (Interestingly, I was recently tested for Sj and came up negative, although I'm still not totally convinced. I'm using lubricating eye drops, and I even tried the lubricating mouthwashes, but I can't stand them. Icky!) I've learned to be very careful with my hands. I get several pairs of gloves that cost something like $2 at WalMart, grocery store, drug store--wherever I can find them, and I carry them with me all the time. I have a pair in my purse, one in my car, one where I watch tv, you get the picture. I lose them a lot, so the cheap ones are a good fit--if I leave them somewhere, it's not a big deal. I also have fingerless gloves that I can wear while I type, when necessary.
I have been waking soaked, too. And I've been experiencing incredible fatigue and a constant headache. I thought it was getting a bit better, then WHAM, it is back again. Docs aren't sure what any of this is about--could be fibro, PsA or a number of other things. I had LOTS of blood work, and it was pretty unrevealing, except for a positive RA factor. YAY, something else to worry about.
One thing they (GP and rheumy) both implicate is the change in weather...even changing from cold to warmer, they say, can wreak havoc with our systems. I suppose it could be a combination of all these factors. The one thing I know for sure is that I feel horrible right now. I'm trying hard not to let it depress me, but I fear I am losing this battle. Usually you have a sense that you are feeling a bit better as time passes, so you have some room for faith that you are going to get well--or at least much better. This just hangs on and on and is really pounding my hopes.
Thank you for your question about Ehlers Danlos. EDS is a complicated syndrome, and there is no specific treatment. About the only thing Edsers do is treat symptoms as they come and go. The joint hypermobility causes lots of pain on its own, making it tough for me to tell if it's EDS or PsA causing it. It's an important distinction. For example, there is NO point in treating EDS with MTX. It's tricky. The other thing that EDS does, for me, is allow my joints to dislocate easily. This is especially true for my vertebrae..turn over too quickly in bed and the vertebrae slip out of alignment. As you can imagine, that hurts. I'm lucky to have a wonderful physical therapist who can usually get me back in line pretty quickly. He calls me a "loose woman." lol Yep. Like any other syndrome, there are many variations, and I don't have it as bad as many others do. Those poor folks can turn over in bed and dislocate a hip, or a shoulder, and they live with excruciating pain all the time. It hurts to dislocate an SI joint, but a hip or shoulder must be truly awful. Oh well, sorry for going on...but thanks for asking how I am doing. Venting is good for the soul.
I hope you are feeling well today!
Dear Byrd Feeder,
First let me tell you that the first one or two RA blood tests came up clean, nothing. The next test pinpointed Sjogren's it came up 'false-positive'. Looking that up told me, as the Dr had, that I did have it, and it would show up positive at a later time, which it did on the next test. Now, he sent me to a Rheum on the f-p result, she told me that I had something but not Sj or even FM, and no overlap, but she didn't know what I had, and she did look at my pitted fingernails, that should have told her right there! I waited 6 months to see her.
I have been to 3 neurologists, and my hands and feet and legs just keep getting number, yes, I had the nerve conduction tests, the muscle tests, that crashed me like hell, the last thing he did was the wrist, showed mild carpal tunner, I would not even allow him to do the second wrist, it was freezing in the office, my wrists hurt me so badly I thought I would never get over it. His overall verdict was that I was 'STIFF', I had to get out of there, Byrd, I was so furious! Needless to say I think I need one, but am not getting a great feeling about their ability to diagnose!!! BTW, I have had 3 MRI's of the head so far, and all are clean.
There is too much waiting involved with all of this, wait for a specialist, wait to see if a med will work, in the mean time we get worse, get more things wrong with us. It's like whatever it is that triggered the very first problem, if it is not detected, corrected, an accumulation of disease just keeps taking place, and each disease, disorder, phenomenon, syndrome SKYROCKETS, and more hop on for the ride!
Now back to tests, my thyroid tests have continued to come back clean, but I wonder... I have never been to an Endocrinologist, but am considering it. My GP and Rheum are both Internists, so I am not sure that it is a good idea or another huge waste of time and resources, I feel as though I am running out of both.
I cannot imagine what you go through with EDS, or whatever it is that causes you to go out of alignment so easily. I know a DC is great for me, but it is the ride to get there and back, but the rain and cold that has come on us may make me venture back.
I was telling Rick on the Raynauds site that I bought the Tommy Copper stuff, seems to help a little, it is a loose compression wear infused with copper and that the next purchase from them will be the gloves, if I think they will cover my wrists, they hurt me even worse than my hands.
I know, I could put on gloves right now, need to get some fingerless ones though, had I not learned to type and relearned my skills when we first got the computer, I would not have been able to do too much, my back gets me before my wrists do though.
If you don't mind, I would like to hear your definition of Fibromyalgia, as you were taught it, when you feel well enough. It seems as though many on the FM site have understood it as something that can be treated unto itself. As I was explained by my GP, was that with overlap syndrome, I had symptoms of many RA diseases, 1 or 2 of Lupus, Sjogrens, Connective Tissue, Raynaud's and RA, if I remember correctly. He said because I did not (at that time) have any of them, the term used was Fibromyalgia. Now, the Rheumy said it's a condition, not a disease, it comes from chronic pain, say from an injured left hand, in time that constant pain changes the brain, and every part of the body begins to hurt just like that injured hand. He says you have to try to treat the cause of pain in the hand to treat the FM. Seems as though this has become such a 'fad' illness for the industry that they are just treating the symptoms.
Well, enough for now, I need to give my back and wrists a break. I may need to dig out some winter clothing or turn the heat on, turn the dehumidifier on for sure!
Yes, I think you are very right about the change of temp, barometric pressure, humidity in saying that a shift, especially a quick shift can dramatically affect us. I just feel the DRAMA pour out of me!!! LOL!!! There we BOTH, perhaps ALL just had our laugh of the day!!!! HA!!!!
That was what Rick from the Raynaud's group calls "wicked humor" he also suffers TN, and I know that you are familiar with it. Supposed to be about the worst pain on the planet, he says it is the worst Satan can throw your way. Seems he is busy with all of us lately!
Oh before I forget it, I had never heard of "EDS" by name before, but I have heard of the suffering of some of the great gymnasts. Could be they have EDS, as surely most must be double jointed, of course they demand so much of their bodies and suffer constant injury.
I know how difficult it is to stay positive, but we just have to, and we have to keep each other laughing as much as we can, nothing can be too silly! Can you 'feel the drama'? Keep laughing, girl! This will read like a book!
SK
Hello SK,
Wow--a big question: how to define fibromyalgia. I suppose I would define it as chronic fatigue and wide-spread musculo-skeletal pain that coincides with tenderness in at least 11 of 18 palpable, paired tender points. <breathe!> When I learned about FMS, we were taught that the diagnosis meant different things to different practitioners.
Fibromyalgia as a term came into use in the 70s to describe a syndrome first described in the 1800s. It has also been called psychogenic rheumatism and fibrositis. The term fibrositis has fallen into disfavor with many because the "itis" part of the word implies muscle inflammation, which has not been substantiated through research. (At least one major study claims to have proven the presence of inflammation; others claim to have disproved it.) This is where things begin to get tricky. These last two terms are still in use and imply a mostly psychogenic basis for the presence of symptoms. Some physicians still use all three terms synonymously, while some see fibromyalgia as a distinctly physical syndrome, with depression as a reaction to the illness, rather than as a possible cause. Pain is reported by 100 percent of FMS patients. Depression is reported by only about 20 percent of FMS patients, according to the American College of Rheumatology.
Recent research shows specific physical findings in FMS patients, including increased levels of substance P and decreased levels of serotonin, both neurotransmitters that enable the nervous system to transmit pain signals, among other things. Sleep studies have shown an alpha wave (brain wave) intrusion into what should be delta-wave sleep in FMS patients. This alpha intrusion into stage IV, delta-wave sleep disrupts the phase when our bodies release substance p, serotonin and other chemicals for repair, growth and restoration. It's been proposed that this is responsible not only for wide-spread pain, but also complaints of fatigue or feeling unrested, even after a full night's sleep. Still, there are many physcians who reject the idea of fibromyalgia as a strictly physical syndrome. Ask ten experts, get ten different answers.
I'm always a bit suspicious when a doc says FMS to me so I usually ask them to describe it. If I feel my complaints aren't being taken seriously, I take them to another doctor!
Hi SK, I have Psoriatic Arthritis, Systemic Lupus and Sjogrens with alot of damage from each and from operation botches. I am a mess. Please know you are not alone and have us to talk to.
Warmly,
Judy
Ladies, I've been following your conversations on this thread. I don't have the symptoms in question but am sure learning A LOT about them. I hope you don't mind. I like educating myself on different things. Also, I must say, I certainly feel for those of you suffering from multiple syndromes. As if one isn't enough??? Must these syndromes jump around once one is established? I sometimes wonder if they are all one interconnected illness that manifests itself in a variety of different ways.
The fibromyalgia conversation was particularly enlightening. Some of you are FAR BETTER at explaining these illnesses than any doctor or medical site. I swear it, your explanations should be used for reference.
BTW, my rheumy has bantered around the term Fibro for me as a possible source of my pain, so I'm not just lookey-looing on here.
Hi Petunia Girl,
Welcome to our discussion about PsA and all this other stuff. It's true that many of these syndromes tend to be co-morbid (exist together); once you have one auto-immune illness, you tend to be a sitting duck for others. I hope you don't have fibro, but it never hurts to investigate anything that might help you feel better!
Hello Judy!
So nice of you to respond, so sorry that you have to suffer all of this, I must tell you that they keep looking for lupus or MS in me as well as the rest! Like Petunia said, Isn't one enough? Botched operations to top it off, I would have gone after the butchers, with my last breath!!
Yes, we sure do need to talk, we need to get you into more of our conversations, you could probably write your own medical journal by now! Knowledge comes at such a price when it comes to your health!
Surely we were all amazing women before all of this knocked us down, I keep getting back up though, seems like you go through the cycles of debilitating pain to wild-eyed rallying! You climb the rocks to get to the top of the mountain only to skid down the rocks on the other side and hit bottom...
Well aren't I just the philosopher tonight! HA!!!
Petunia, what in the world is 'lookey-looing'? where are you from, girl? LOL!!!
Our Byrd Feeder is one smart cookie! I have learned tons from her, lamb and 2 trees, Rich told me all about Spinal Stimulation, (that is not as sexy as it sounds, believe me), so very many wise people on here, I was only able to mention a quick few! I have learned valuable info from all. I am amazed, this really should be published!
I am also on the Fibromyalgia, lots of smart cookies on there too.
Elizabeth also has Sjogrens. Petunia you are so right about the interconnection of these disorders, syndromes, phenomenons, it is like the snowball e
ffect!
Seems like the underlying cause is alway something like trauma, genetics, mycoplasma, allergic reactions, underlying infections like yeast or strep, food sensitivities and allergies, toxic exposure, severe stress, underlying endocrine problems, usually thyroid, undetcted lyme disease... Gee what have I forgotten? Lots of conflict over whether or not to even vaccinate your child!!
There are so many teenagers diagnosed with FMS it is astounding, and it is knocking them flat!
Then you talk about my first diagnosis, 'over-lap syndrome' I have one or more symptoms of these diseases, but I don't yet have any ofthem,
Lupus, mixed connective tissue disease, RA, Sjogrens, Raynaud's, the last one escapes me right now.
Because I don't have any you can also call it FMS, (this is the trash diagnosis they refer to) I have classic trigger points plus! And he tells me that it is just the beginning of the diagnosis, and it seems as it just keeps progressing. This is just beyond my conception after a while, imagine trying to diagosis all of this in the alloted time of a Doctor visit. Everything I have read says most of this takes 7 years to be diagnosed! It is right on the money with me!
I am the same with the research, petunia, you have to know what is happening to you, at least I do, you have to be able to ratinalize it, and you have ot be your own advocate! Most importantly you have to find a Physician that is not intimidated or annoyed by your interest in your own health and the only life that you have to live right now!!
The Fibro site ready nearly the same exact content as this one does, and they all have more than just FMS too!
Well, always good to talk to you Petunia, and Judy, so glad you jumped in, hope you start talking to all of us more often!!
Hello to you too Byrd, my friend!
Wishing you all the best life has to offer,
SK
JudyVT said:
Hi SK, I have Psoriatic Arthritis, Systemic Lupus and Sjogrens with alot of damage from each and from operation botches. I am a mess. Please know you are not alone and have us to talk to.
Warmly,
Judy
Hi sk I have been told that along with my PsA I have fibro and ranaurds disease. X
Hello Lynn,
Hope you are feeling good today, so sorry we've have to meet this way! May I invite you to join these groups, to help bulid those communities so that we can raise awareness, and reach more people. Currently we only have 6 on Raynauds, Ben is trying to build this to the needed 100 so that we can make this a 'full flegded group.' The info that Rick included for us taught me some things that I did not know about Raynaud's even with exhaustive research. If you google Ben's Friends patient blog, you will come to the place where you can access all groups of the combined communities. Just click on groups, then join and talk to us.
The FMS group is growing by leaps and bounds, people of all ages, so much info, and such great discussions! I am at both other places, besides here.
For those with Sjogrens, the heading for the group is there, there are currently no members, but I left a message for Ben that when he was ready to go on with this group, that he could count me in! This is a rapid growing disease, it affects more than just the eyes, though that is our most noticable complaint! Leave a note on the board for him, let him know that you will help to support this group, when he is ready to open it!
We have so much to talk about, Lynn. Lets help make this happen for Ben!
Be well, be happy,
SK
Hi Lynn,
Yes, I have Sjogrens, Raynauds, Lupus, Psoriatic Arthritis....and they all stink! Keep fighting and you have support on this site!
Warmly,
Judy
PS.
And Fibro too with tons of damage from the diseases and the surgeries....forgot to add this. Osteoporosis too...
Hi Judy,
Me again, I had started a discussion on the FMS site about thinning hair, and my British buddy tells me that I can google info about Raynaud's being linked to hyperthyroidism. Although they keep testing my blood for Thyroid problems, seems that it is very illusive until it becomes a serious health risk! Just more info linking it all together!
Take care,
SK
Hi Lynn,
Just got word from my British buddy on the FMS site that there is a link to Raynaud's and hyperthyroidism, so yet one more thing interconnected! My GP keeps testing thyroid through bloodwork, but I understand that it is very illusive and difficult to detect until it is a serious health risk. Great, huh?
Now on second thought, there is Raynaud's Disease, which is vascular, there is Rynaud's Phenomenon, also vascular, then there is Secondary Raynaud's Phenomenon, when combined with Scleoderma or mixed connective tissue disease, somehow is catorgized as Autoimmune!
Sure it all hurts the same. Saw they sell gloves that you can put in the microwave to keep your hands warm for 30 minutes, thinking they may be my birthday present next month from me to me, especially if they cover my wrists! Was talking to someone about having to take gloves to the grocery store for the frozen food section! Sure you know the feeling!
Stay strong!
SK
I think we all need to walk the journey together as these diseases are so very tough to deal with! I am in pain 24/7. I am unable to take most meds to to severe reactions....researchers say I carry a gene that some redheads have and this is causing the reactions. Tough when you have a shoulder operated on for Arthritis and can't take pain meds! THAT was something and 2 yrs later, still cannot et it comfy to sleep at night. I will be having great right toe surgery in Oct and the surgeon said, "You HAVE to take painmeds for that as this is going to be a very painful surgery for you"! I have been working with a researcher for a few yrs and he still hasn't been able to help me. I am a fighter with a great attitude. I get on the tread mill and though I might walk slowly and tears may run down my cheeks as I trudge on, I MKE myself do it, which my Rhumy is happy that I do. I used to be so athletic....very tough.I never know how long /short to walk....not enough? But usually I overdo it like I did yesterday and today I can barely move! UGH! As I said in another post, Enbrel did not help me at all after 9 months of trying. I didn't have severe reactions from it other than headaches and small things so I kept trying. But it did nothing....and my damaged GI sytem will not allow me to take Meth by mouth so have not tried them together. Just started on Humira and have only had 2 shots so HOPING not to react other than feeling BETTER! I guess this can take months for some people to know if it's helping....I feel nothing yet. Anyway, I am not a newbie to all of this with all of these diseases I have and operations I have had. I was diagnosed with PA in 5th grade and Lupus, Sjogrens and all of the rest as time went on. I was in the hospital when my kids were young, for THREE months....from Nov 3 to end of Jan, right thru all of the holidays. I had nasty operations, got peritonitis and thena bowl obstruction for the last 1.5 months of my hospital stay....it was a nightmare! Have had several life/deahth experiences but each time have kicked the devil in the butt, which I hope to do for a long time. I am in my 50's now so you can see I have had a lifetime of these awful debilitating diseases. They have robbed me of so many good times. BUT, I refuse to stop fighting!! As you can see in my profile pic, I have 2 GRAND-DAUGHTERS now! I never thought I would see my own daughter and son grow up yet, here I am with the joy of grandchildren, despite these awful diseases! I have a wonderful husband....will be 39 yrs of marriage July 8 and a wonderful daughter, son and inlaw kids....and grand-daughters Abby and Leah! So I have alot to be happy about. I have no other family support.....that's for another day of posting, lol! But I am thankful for my little family and try to focus on them in my worse times....even if it means just looking at grandbaby pics to make myself smile! Anyway, it's good to belong to this group and I thank you all for support! I was anurse for years and a patient forever....later yrs counseled with my Psych degree I got later in life. So, I am here for you too! Forgive my typos...too sore to deal with going back to fix! Have a lovely Sunday and week everyone .
Warmly,
Judy
Hi sk and to all that have wrote and welcomed me it is very much appreciated I’m still in bed not having the best time of it at all I will definitely have a look at the groups when I’m feeling a little better thanks very much for the info.
Tc