This came up in another discussion and I was just curious if there might be any correlation. I know some people with EM only have EM while others also have Raynaud's/ Pernio. I also know some with EM only have the EM directly associated with temp and activity while some others also have strange joint arthritic type pain without a diagnosis of any type of arthritis. If you have both do you also have joint pain?If you don't have both do you have joint pain too?I am just trying to see if there is possibly any connection to the type of EM and additional non temperature related pain.Thank you!
Good idea to ask for these inflammatory tests if you have co existing - is the joint pain actually rheuma/arthritis/sclerdoma etc..? Raynauds can often preclude these diseases.
An ANA test - please ask him to specify that it be done by IFA methodology. An ENA panel (includes SCL-70, and anti-RNP) Anticentromere B test nailfold capillaroscopy
Interesting point is that secondary raynaud’s often associated with connective tissue disease, and some forms of connective tissue disease have arthritis as one of their symptoms. Could explain our joint pain, tightened muscle, constricted tendons, popping joints etc.. .Certain forms of Raynaud's and erythromelalgia can be associated with inflammation in the muscles- myositis and fibrosis - our damaged or hyper excited small nerve fibers irritate the joints. Serotonin levels thought to be implicated in EM/Raynauds - low serotonin levels are linked to chronic joint and muscle pain. Food for thought.
This joint pain /muscle aching is very much classic fibromyalgia, which also involves chronic fatigue. Could it be EM/Raynauds secondary to fibro?
I have both EM and Raynauds and have horrendous foot/joint pain. There was a time when I thought I'd have to give up my job and get a sitting down role because of the severity of pain upon standing. I know wear orthotics which helps a little but hasn't got completely rid of it because I have hyper mobility in the bones of my feet.
Re: serotonin hypothesis. Im totally in agreement. Definitely something in it. I did a post end of last year on this. Instead of taking Effexor, I started trying 5HTP - tryptophan,. The body uses tryptophan to help make niacin and serotonin. 5-HTP is thus used in the production of the chemical serotonin in the brain and nervous system - boosting serotonin naturally.
n order for tryptophan in the diet to be changed into niacin, the body needs to have enough iron, riboflavin and Vit B:
Is naturally food in some foodstuffs
Cheese
Chicken
Eggs
Fish
Milk
Nuts
Peanut butter
Peanuts
Pumpkin seeds
Sesame seeds
Soy
Tofu
Turkey
Have you noticed how Vit Bs keep coming up time and time again?
Please get those supplements guys- Vit b, omegas, Magnesium
You can test yourself re serotonin hypothesis - if its for you. Take 5HTP for 2 days and see if you flare more. If so- serotonin route is probably not for you. Dr Cohen explains this in his medication sense.
I am of the opinion dear miss Tizzy, that 5HTP is helping me.
All this talk about joint pain and hypermobility makes me think of Ehlers Danlos Syndrome. I feel like I read something about EM and EDS, but I don’t remember where or what exactly, as I was doing a lot of furious late night googling at that time. Has anyone else read about occurrence of both? My younger brother has EDS.
Thank you all for your replies. So far I am seeing that everyone that has posted has Raynaud's type symptoms along with joint pain. Is there anyone here that doesn't have Raynaud's but DOES have the joint pain.
Then like the many hypothesis so far is it something else that causes the Raynaud's , joint pain and EM or is it a particular type of EM causing it all?
Mads, I have had the tests you listed many times and other than intermittent elevated SED rates every thing else has been normal so far. I am still being treated for auto immune because of the undeniable systemic symptoms. My rheumatologist says as much as 20 % of people with autoimmune diseases don't have positive blood tests.
Now I am just not sure. I suppose it could be but then I would think my EM would be better after over a year of autoimmune treatment.
4 years a go I was diagnosed with pernicious anemia ( inability to absorb B 12 ) and I have been receiving injections of B12 ever since. My numbers have been normal since but this hasn't made a difference in my symptoms either. I know prolonged low B12 can cause a wide variety of symptoms up to and including death and a big problem is neurologic symptoms. Could it be possible the symptoms continue because of dead nerves that can't come back? After neuro exam they only find possible small fiber neuropathy but the large fiber nerves are normal.
I hope to get more responses from both those with and without the Raynaud's to see if there is some kind of link here.
Then it comes down to which came first the chicken or the egg!
So that you can add me to the appropriate column, I have had some Raynaud’s symptoms - some blanching of fingers and/or blanching and blueness of the toes at cool temperatures - on random occasions but not regularly. I do not suffer from joint pain.
I have joint pain but no Raynaud's. I've been diagnosed with a type of arthritis that is an autoimmune disease.
The arthritis started just over a year ago and went on for three months before getting better again, but leaving me with EM. So I think the arthritis might be the cause of my EM.
It is odd the b12 haven't helped. I was really hoping I could chalk it up to that and it would get better with treatment but so far this is not the case. I don't know how long it takes for damaged nerves to heal but I have been in normal range now for 3 and a half years. There is still the possibility it takes longer to heal or that some nerves could be dead and to my knowledge there is nothing that can be done once they are dead nerves. Still another possibility is that it was just a coincidence and not the cause of the EM all though I know any thing causing nerve damage can be a culprit.
So you don't have Raynaud's Mick but you do have a reason for the joint pain. Any luck with meds that have at least helped with your arthritis?
Thank you Nola Sue. I am glad you don't have the joint pain too. I know it is a long shot finding any sort of pattern in this but it is human nature to try. I keep thinking if the varying types of EM can be narrowed down further into groups there is a possibility that the same treatment that helps one type of EM will help others with that similar type. It could help find the probable meds to try first. Then again there just might not be any sub types and such answers can't be found.
Thank you all for pitching in here in my quest to make some sort of sense of any of this!
Take care,
Alina
Tizzy said:
I was just giving another post asking about SFN my best shot. As i understand it these are the small unmyelinated nerves in skin muscle facia mucous membranes. They grow in tangles in SFN and therefore sensory messages are also distorted They regrow pretty easily , they need to in skin,BUT in SFN they regrow tangled. I dont know why ,is it maybe the long peripheral nerves that lead to them are also damaged and send poor signals that cause this growth?? Odd that the b12 shots have not helped-,the long peripheral nerves are myelinated and grow back very slowly,but I would have thought you would see some improvement- this is so confusing! Anyone else know???
Alina Delp said:
Thank you all for your replies. So far I am seeing that everyone that has posted has Raynaud's type symptoms along with joint pain. Is there anyone here that doesn't have Raynaud's but DOES have the joint pain.
Then like the many hypothesis so far is it something else that causes the Raynaud's , joint pain and EM or is it a particular type of EM causing it all?
Mads, I have had the tests you listed many times and other than intermittent elevated SED rates every thing else has been normal so far. I am still being treated for auto immune because of the undeniable systemic symptoms. My rheumatologist says as much as 20 % of people with autoimmune diseases don't have positive blood tests.
Now I am just not sure. I suppose it could be but then I would think my EM would be better after over a year of autoimmune treatment.
4 years a go I was diagnosed with pernicious anemia ( inability to absorb B 12 ) and I have been receiving injections of B12 ever since. My numbers have been normal since but this hasn't made a difference in my symptoms either. I know prolonged low B12 can cause a wide variety of symptoms up to and including death and a big problem is neurologic symptoms. Could it be possible the symptoms continue because of dead nerves that can't come back? After neuro exam they only find possible small fiber neuropathy but the large fiber nerves are normal.
I hope to get more responses from both those with and without the Raynaud's to see if there is some kind of link here.
Then it comes down to which came first the chicken or the egg!
I have had EM for about 4-5yrs but have had Raynaud's, fibro, SFN, PN & diagnosed arthritis for MANY yrs prior. But since I've had the EM the joint pain, arthritis has DEF increased & worsened. And I now have it in new strange places that I never did before. I mean, who ever heard of it being poss to have arthritis in your clavicle??? But I have it in both. Def takes a minimum of an hour to get the ol joints moving in the AM. But I have always been hypermobile all my life & a string of other issues lead to my diagnosis of Behcet's disease just 2 yrs ago.
I have had EM for about 4-5yrs but have had Raynaud's, fibro, SFN, PN & diagnosed arthritis for MANY yrs prior. But since I've had the EM the joint pain, arthritis has DEF increased & worsened. And I now have it in new strange places that I never did before. I mean, who ever heard of it being poss to have arthritis in your clavicle??? But I have it in both. Def takes a minimum of an hour to get the ol joints moving in the AM. But I have always been hypermobile all my life & a string of other issues lead to my diagnosis of Behcet's disease just 2 yrs ago.
May I ask Hotmama what finally led to your diagnosis of Behcet's? That is what they currently have the suspicion I have but not enough for a diagnosis. That is why they started me on Azathioprine if I spelled that correctly. They say that is one of the autoimmune meds that help Behcet's specifically. A lot of my other symptoms have improved since being on it such as the mouth and nose sores and some gastrointestinal issues .I still get a few weeks here and there with sores in my mouth and just recently my scalp again but it doesn't happen as often as it used to. My Random joint pain has improved but as you said with flaring EM my joint pain in non burning locations increases too. Do you per chance have random neurological issues too? Not just EM but autonomic type symptoms? I know you have PN but is it strangely intermittent in nature? My last neurologist told me it wasn't possible to have intermittent neuropathy but I know what is going on in my body and it happens! Blood clotting issues too? I am sorry I can't recall if I have asked you already.
After rounds with many rheumatologists, i found one who I say thought outside the box, and dx'd me w/Behcet's, One of the first things he asked me when I first met him was "can you bend your thumb to your wrist??" I looked at him funny & said what?? I've always been hypermobile & I guess that along w all other sx's he felt it was behcet's. Of course there's still the RA poss, as I've tested positive 2 out of 3 times. And we are still on lupus watch as my birthmom died of it, numerous maternal fam members have it, and I tested slightly pos on anti-DNA (?) test. I was on prednisone & azathioprine & it did help immensely in the beginning but we had to keep upping dosages. For being so small I have an extremely high tolerance for meds. I've even woking up during surgery! And I developed pneumonia for the first time in my life while on the immunosuppresants so i stopped them.
As for random neurological issues, don't get me started!! Lol. I've been worked up at UCLA for MS yrs ago as I do have random white spots on brain scans in the gray matter but since the number of spots hasn't increased, just stayed the same, they didn't feel that it was MS. Was told it might b vascular.....which yrs later also fits into the Behcet's dx. And yes I def have intermittent neuropathy. No doubt. It's usually waist down but I do also need back surgery.
Blood clotting issues....poss. My birth mom had it-goes w the lupus. I have had a minor stroke (TIA) 10 yrs ago in the right occipital part of my brain. But I also have a congenital heart defect (ASD) & they feel that might have been the cause.
And these are only the tip of my medical issues....makes me wonder how I've gotten denied twice for permanent medical disability & are now waiting to go in front of a judge??? All I gotta say is have them live in my shoes for one day.....
Thank you Hotmama and don't worry about the rambling. I think you stayed right on topic and I am the one most people refer to as the rambler!
I don't have hypermobility but the recurrent sores in my mouth , nose ,and vagina are the things that are making my Doc lean a little more towards Bshcet's. That and the vascular component that often accompanies it. I too have a few spots on my brain MRI but not significant enough to lead to anything in particular. They considered them incidental findings.
So far I haven't had any major illness while on the autoimmune meds. I suppose it helps I rarely leave the house and am in contact with others. So far so good. I am glad you found someone willing to think outside the box. My doctor does as well. That is why she is treating me even without specific diagnosis. She said as much as 20 % of autoimmune conditions don't show up in blood work and if it walks like a duck and talks like a duck it is probably a duck! Although an actual diagnosis of something specific would be helpful in getting SS disability because so far they don't seem to think EM alone IS ENOUGH!
EM is the most disabling part of the whole picture! I know.... deep breaths. no use getting worked up about it.
Yes, I've had the joint pains for years and they attributed it to arthritis.. I recall in 1999, my hands would swell up, the joints would turn red, they were extremely painful and stiff.. I saw a Rheumatologist who could find no reason why this should be happening, but he could SEE what my hands looked and he could fee the heat rolling off them, so he put me on Celebrex. I have to wonder now if perhaps this was EM showing it's ugly face to me..
Today, my feet are a level BEYOND painful, and I cannot get rid of it, no matter what I do.. My left foot feels half dead when I go to step on it, but then the burning needles sensation kicks in and then it's like it's just flopping, and this is scaring me.. My leg feels weak part way up towards my knee, with tingling halfway up the calf.. Is this normal? Man, I'm having all I can do to get my doctor's office to prescribe me something for pain, now how I do tell them, "by the way, I can't feel much of my left foot, and my leg feels very weak. I think I need to go back to the ER."
My doctor is out of town today, and one of his partners is refusing to prescribe anything for me for pain, even though HE'S the one I saw about my feet on the 9th in the first place! How IRONIC is that? Sorry for griping: I haven't had a decent nights sleep in weeks and it just feels like I'm going downhill..
Have you tried cooling your feet and legs? And elevating them too? I get the tingling and the electric like needles with the intense pressure as if they will explode. I get this when my fare is really bad. I can get burning most anywhere but the electric burning needles usually happens in my hands and feet and sometimes just my knees. The sensation seems to spread up into my fore arms and into my calves. Cooling and elevation is the only thing that helps when this happens.
When this first started happening to me I went to the ER on several occasions because of it because it is down right scary!
In my case they were never able to help me but who knows you may have better luck. Even if they can't stop it from happening they may be able to help with the pain.
I suggest in the future seeing a pain specialist as most doctors are hesitant any more to prescribe pain meds . That has helped me having someone to go to just for help with the pain and they are able to prescribe pain meds on a regular basis if you continue to need them.
Try not to be afraid...I know easier said than done. Just the fear and stress alone can make your symptoms worse but don't let anyone tell you that is what is causing it to begin with.
If you need to go I suggest you do if you can't find relief in cooling and elevation. Can you put AC on and get your home in the low 60s? I sometimes need a fan on top of the low temps. I hope this helps. Please keep me updated on how you are doing. I really do care and I am worried about you. You are not alone.