Hi
I have been getting fluid in my ankles and feelings of fluid falling down my legs when I get up in the morning.
All of this I assume is from Venous Insufficiency in my deep veins of my legs.
I also get the burning feet episodes and muscle twitches/pulses in my legs and arms.
I have been wondering however whether the EM causes the Insufficiency or the other way around?
Anyone have similar issues?
I’m can’t say for sure but I would think the insufficiency causes the EM. For many people the EM is a symptom of an underlying condition more than a disease itself. I believe mine is caused by an autoimmune disease but my Rheumatologist can’t say for sure that it is. She says it’s still possible that I just have 2 separate conditions. there is really no way to know for sure which came first the chicken or the egg.
This is a tough call. It may seem overly simplistic, but perhaps the easiest determinate would simply be which came first? Older age and varicose veins are risk factors for venous insufficiency. EM induced inactivity could weaken the muscles of the legs and exacerbate pre-existing venous insufficiency.
The symptoms of venous insufficiency are also very similar to EM. How was it determined that you have both?
I agree the problem with EM is that there can be various causes and until you find out for sure which came first it's hard to know how to solve the problem. The latest thing with me they have said is that I have cellulitis, which can seem the same as EM. However, I have now been on antibiotics for nearly two weeks and no change up to now! I know it might take longer, but I would have thought there would have been some improvements. I am sure once again they are just stabbing in the dark and not bothering to find out what the real cause is in the first place!
sheltieliefe: Do you have an apparent infection in one limb or is it bilateral? Because bilateral cellulitis just doesn't happen. That's one thing my doctors quickly dispatched with me. Cellulitis doesn't magically jump from limb to limb. There needs to be a break in the skin to allow the infection. If your doctors are telling you that you have bilateral cellulitis, I'd get new doctors.
Funny you should say I need to get new doctors! I have only a few months ago changed GP practice as my old one gave me some pills which caused a serious drug interaction and so I changed to this practice. Where I live in Cornwall UK there is only one GP practice that I am supposed to be allowed to join and that was the old doctors. The new ones only took me on because of that interaction. However they don’t normally do home visits as I am out of their catchement area but in the circumstances they said they would at the time. However this last week they have been refusing me home visits! I am on my own and don’t have any family I have some friends but they have their own problems. They don’t seem to accept that I can’t get there if I am bad.I have been so bad the last couple of weeks that I can’t drive never mind walk at the moment. So only on Friday I rang my old doctors and asked if I could go back. They said yes but I had to send registration forms which I did yesterday, but it’s Easter so they won’t get them until Tuesday.The trouble is if I need one soon I won’t know which doctor to call!
If you haven't already had a recent venous doppler ultrasound by a vascular surgeon to rule anything else out & have good medical insurance, maybe that is what needs to be done.& pay the physician a visit who diagnosed you with the vein problem....the twitches, might be caused by restless leg, which, too is common with people who have this.. VI.. I, too, have venous insufficiency, & here they want me to wear prescription 20/30 strength compression support hose....I can't stand it when the burning tops of the feet are actually made worse rubbing against them...Unless there is a way to get the hose smooth, & haven't found one..so far......And, yes, swelling, of my feet can come with too much salt in your diet or sitting, for me too long....or just having venous insufficiency( caused by varicose veins)......There are plenty of supplements that can help your vein problem.( heavy pressure in your legs, etc).....Check out a Dr. Axe's page on what to take.& use....I just dislike my feet, right now....all purple they are, so I wear a lot of make-up to cover them & it's so hard to wear any socks for too long when you have EM, or symptoms of such....Good Luck, & one thing, I think you probably know about is to elevate those feet when they swell. Best, though, check with your primary doctor or vein specialist...Or, what you think what will work for you...
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I have had ultra sound paid to see a vascular surgeon, the results were that my main arteries are OK but I have no pedal pulses at all. He said it doesn’t mean that the smaller ones like veins or capillaries are OK though. In fact I had Cushing’s Syndrome due to my adrenal gland problem and that causes capillary damage. It was him that did blood tests and found I had thick blood high red blood cell count and referred me to haematology who just did one test a Jak-2 which came back negative. He said had it been positive he would have done blood letting. However as the test was negative he said no further treatment required and no more tests! I really don’t know why they didn’t do the blood letting anyway, unless it came down to money as that was NHS. I can’t afford to pay for blood letting as I believe you have to go every week for a long time. What I have thought of doing is paying to see the vascular surgeon who was wonderful just to ask the question. As for compression support hose I haven’t been told to wear them. As you will have gathered I don’t have insurance, I did until my husband was 65 paid for by his company but then it stopped when he reached retirement age and we couldn’t aford to pay ourselves. Plus my private hospital in Cornwall is rubbish, they don’t even have intensive care. So apart from paying for a consultation I am stuck. If I had lots of money I would pay to go to a better private hospital anywhere in the country but I haven’t got enough money for that. I am afraid our NHS is rubbish these days. My only NHS hospital has been on black alert the highest problem level there is for a few months now, people are waiting outside A & E in ambulances for someone to see them even with life threatening things. So what chance have I got. I just pray that our present party doesn’t get i. on the 5th May as if they do nothing will change.
When i was eating a high carbs in my diet, and not paying attention to anything i ate, i had your EXACT symptoms. I would get up in the middle of the night to go to the washroom, and it would feel like blood would immediatly rush to my lower legs and pool there, it hurt as it felt like a ton of pressure building up. Same when i got up in the morning. After changing my diet to gluten-free and low carb, i no longer have bulging leg veins and that feeling when i get up. Its completly gone in my legs. However i have been diagnosed with EM. Now when i experience a EM flare, i still get that feeling you described being in your legs, except now its only from my elbow down to my hands, in my forearm region. My veins bulge out quite big in my forearms during a flare, or when im hot.
hi what is venous insufficiency plz,,i not heard of that before.
when my ankles swelled up really bad the doc gave me water tablets and they did work thank goodness,but i do get twitches,in my legs,also the feeling of spiders running down my legs deep inside,or like i would describe a glass of coke bubbling and popping,i also suffer trapped nerves in various places especially my arm
@sarah -- venous insufficiency is an inability to return deoxygenated blood (venous blood) from the legs back to the heart. In the cardiovascular system, arteries carry freshly oxygenated blood away from the heart, the capillaries are small vessels across which gases and nutrients are transferred, and veins return deoxygenated blood back to the heart (an exception are the pulmonary arteries and veins). Venous insufficiency occurs when there is an obstruction, such as a blood clot, or damaged valves intended to prevent the backward flow of blood through the venous system.
nice work carterdk , you are right on with what you say . When I injured my right knee on a thurs. by sun my knee wasn't where this freakish EM started to take hold (there was massive pain in the r.knee and locking up of it too) It was my right foot that swelled up huge and the ER wouldn't listen or pay attention to my knee they thought a massive infection was going on with my r.foot/ankle . After IV's and antibiotics still know change then it went to the left foot/ankle after approx. 10 days both were huge all the symptoms you (carterdk and sarah) describe were my issues from april 2011 till now . I was on heavy amounts of antibiotics from april 2011 to the end of nov 2011 before I refused to take them as I didn't believe I ever had cellulitis . Doppler proved no clots in either vein system right or left legs (even saying they could tell both were clot free by only dopplering my left leg ??) Now my ankles and feet do there own thing (always together) when they feel like it .They are a nice brownish deoxygenated blood color that has never gone away . I used all the terms and sysmptoms described in this post so many times over the last 4 years schooling every Dr I have seen . Mostly to wide eyed uneducated (professional) people that try to get me to play share the dollars and try sending me on that loop of prof. friends they all think I should see . Anyways for me I have thought i have been in remission several times in 4 years only to have the carpet torn from under me landing me right back where it all began with me weak and bummed out sleeping like a bat upside down , nothing touching my feet/ankles , no shoes socks praying for a cool day and trying not to let it get the last 5% of my incredible shrinking non productive world . I have yet to find answers for any of the screwed up things that goes on now . I do know that from the weather systems passing overhead to the heat of a flash from a camera 20 feet away to a fly that went by my feet and just thought about landing on my feet (in fly speak no less) anything and everything can , has and will again affect my EM . so Just try to let all the bad unexplained things go . Try to remain as calm as you can and ask questions take notes pics . Keep a journal , if a Dr isn't cutting the mustard or isn't helping like you think they should then dump them politely and find ones that do help , because after a time you will be and are the expert on your EM , The Drs just have to be willing to listen to what you are telling them . (Wow I wish I didn't have to go back and remove and or correct every word that have extra letters from all the IBM's (Involuntary body movements) and twitches the last 30 min it took to type this ((ha ha)) now its 45 min .
Also when something that you are not sure of or you feel blue or concerned about something new and strange happening to you , just type it up and post it on this website and stay tuned because someone a moderator or a fellow EM sufferer will contact you with advice or to say you are not alone . It really is nice to know it's not all in your head and you now have many brothers and sisters that know exactly what you mean .
Be strong everyone ..... John from Canada
101-DSC05141.JPG (3.76 MB)@Sam
Did your doctors ever consider complex regional pain syndrome? Like EM, it causes dysfunction in the autonomic nervous system and is most often seen following an injury or trauma.
CarterDK said:
@sarah -- venous insufficiency is an inability to return deoxygenated blood (venous blood) from the legs back to the heart. In the cardiovascular system, arteries carry freshly oxygenated blood away from the heart, the capillaries are small vessels across which gases and nutrients are transferred, and veins return deoxygenated blood back to the heart (an exception are the pulmonary arteries and veins). Venous insufficiency occurs when there is an obstruction, such as a blood clot, or damaged valves intended to prevent the backward flow of blood through the venous system.
Thanks for reply carterdk , so how would a person no if this is the case, or is this common with em,I have never had this discussed with me by any of the doctors/specialists i have seen,
@Sarah
I'm not sure. I don't have venous insufficiency myself and only understand its basic features. Others on the thread have spoken of a venous doppler ultrasound, but i'm unfamiliar with that.
Could other members help Sarah? What is the diagnostic process for determining venous insufficiency?
