Can anyone describe the feeling of th... - Sticky Blood-Hugh...

Sticky Blood-Hughes Syndrome Support
9,142 members9,208 posts

Can anyone describe the feeling of the beginning of a leg (mid calf) clot?

One morning last month I was rudely awakened by a severe left calf leg cramp. The kind where it turns hard as a basketball and you don't know whether its best to writhe in pain or force movement. (I later learned forcing movement is the way to get rid of it fastest) Then I was reading this site and one member mentioned he rid himself of these by drinking tonic water. I used to do that. It used to work~ I don't know why I forgot, but it did not work this time. It did not alleviate any pain. There is no bump, no red mark, no streak. Just a deep, deep dull ache, about 2" behind the back of the knee down the calf, very -very deep inside. I called my GP and she said if I felt any increase in pain, movement in placement of pain, redness or bump she placed an order at the hospital for a doppler on that leg. Has anyone had a clot start out and behave that way? It's been a total of almost 4 weeks. Pain is higher after treadmill for about 2-3 hours. My GP said to take the speed down to 3.0 mph, which is a medium stroll for my short legs. But I still had increased pain in that exact place. It goes down to a dull ache by the end of a normal day. Every time Ihave had a clot, it was already too late. I have never had one dissolved or taken care of before it becomes an emergency. Usually a stroke. Any input of how your clot started and how you knew it was there would be appreciaed. No temperature. Terrible heat wave. 94 degree F. today. So it's an inside day.

Thanks in advance.

Carary Diamond

13 Replies

HI, I had a few clots 23 years ago to be precise... started as dull ache in calves, one after the other, as if I had elastic bands under the knee and then settled into a deep tooth ache style ache.. I had been on the alert as both my sister had this when pregnant... I lived nearly next to St Thomas' at the time, by luck.... and did not hang about...My legs did not do much swelling, however my sisters both had this... as nobody understood their's. Hope this is of some use, it was a long time ago. Mary F x


Thanks Mary. Long time ago or not, it happened to your lower leg, also did not swell, pain went from much to medium. NO bumps, no redness, no streak and deep, deep pain. Hmmm Sounds a bit the same. You were diagnosed with clots, but if I remember, like me, you are managed on about 320 mg aspirin. At least I have the order for a doppler aleady in at the hospital so all I have to do is register and go. Also, Fetanyl is a prescription you must pick up from your MD's office here. It's what they call it a 3-signature drug. It takes 3 doctors to agree that you medically require that level drug. So I have to renew my Fentanyl and I will, therefore, see my rheumatologist tomorrow to pick it up before our holiday (Labor Day Weekend) . I am sure I can casually mention it and see what she says. My new daughter=in=law is her daughter's gifted match teacher! Maybe I'll sneak a little shop talk in. It'll be hard as this is the first week of school.

Thank you, Mary. At least I know it could realistically be a clot and if it goes on much longer probably I should have a doppler done, if only to eliminate the possibility of a clot. Thanks so much.



I hope it all works out, let me(us) know. Mary F x


Hi Canary. My DVT started with a feeling as if I had a deep bruise inside my calf, like the morning after a mega cramp. No redness and no swelling until after treatment started. The pain got worse and worse for 10 days until I couldn't drive anymore and that's when the doctor did the test and sent me to A and E for a doppler. Confirmed as ankle to groin DVT. Canary - time to fly to the hospital for that doppler. Thinking of you, Larraine x


Hi Canary, I had 5 clots in my left leg that started out like my leg was on fire. They did an ultrasound right away and then sent to specialist, went in for removal of clots as there were no sounds in my foot, it was already dying. They removed clots and then started 3 weeks of twice a day in the hyperbaric chamber. Won't go into it now but that wasn't fun at all. Anyway, gangrene set in and I had at first removal ot toes, next surgery was the ankle and finally the leg below the knee. Don't let fear stop you, your doctor can take care of you is she/he knows APS. Good luck!!!!


Dont wait, have the doppler done!!! Life is to short!! xxxxxx


When i had my clot, i had very little sweeling but a pain that appeared to sit just above my knee and felt like a bruise. At the time my mum thought i was being a wuss (no history in the family and she assumed i had knocked my leg) so i ignored for a few days. The next day the pain seemed to move down behind my knee so i went to the GP. I was immediately referred to hospital who took bloods and advised within the hour that they were 80% sure it was a clot. I was kept in for five days until they could fit me in for a scan. Unfortunately for me it was a big clot, destroying valves in its path so i am now leff with the prospect of a swollen leg and diuretics. Hindsight is a wonderful thing but all i would say is, if in doubt, get it checked soooner rather than later. It could have far more serious for me if i had continued to ignore it.


I had my first DVT in 1986. My platelet count was over 800K so a diagnosis of throboytosis was a no brainer -- the diagnosis was not changed to APS until 2001.

But one evening I felt a strange pain from my left leg during a pleasant family dinner. I kept fidgeting because I assumed it was some sort of cramp. I tried a heating pad on it when I went to bed and the heat did help. Next morning I woke with the pain more intense then before and the memory of a disturbing dream in my head. In my head a disembodied voice told me the pain in my leg was going to kill me if I did not stop it. Strange, huh?

But I did call my Father later that day (he was a doctor,) and jokingly told him about my strange dream. I expected my Father to laugh with me (Ha, ha, ha) about how being an over-worked mother of 2 toddlers can produce bizarre dreams. Instead of laughing, my Father (who had had many DVTS himself) asked me to do the following:

Extend the effectcted leg in front of you with a straight knee. Pull your toe back toward you so that it goes from pointing out to pointing up. Now do the same manuver with the uneffextend leg. Do you notice a pronounced difference in the pain level in the effected leg as the toe is pulled? Or does it feel as though something in the painful leg is moving when you move the toes?

When I did the test and said "Yes.," my Father took a big sigh and asked me to call my Mother (he and Mom were divorced and did not speak) and tell her to come and watch the kids. Then he asked me to turn on the most boring TV show on the television, lay down with my legs elevated, and watch the boring show.

Then my Father called my husband at work and asked him to come home immediately. Then Father called a local vascular surgeon he knew and arranged for me to have a leg blood pressure test in his office. And to show exactly how concerned he was Father actualy called my Mom and asked her to drive to my house and watch the kids and to NOT TELL ME HE HAD CALLED as he explained it was crucial that my BP not rise.

So, I did have a DVT and I was thrown into a hospital and put on warfarin.

But for subsequent leg pains I have found this "pull your toes back' test to be useful. Hope this helps you.


1 like

Thanks to one and all!

Funny, I've only found this forum 2 months ago or so and I trust the patients on it more than I do, well let's just say I trust them most. I took Angelpaws advice and flew to the hospital. (The general concensus of the forum) Really , thanks all who answered my call, (I didn't expect it) I called my GP on the way and everything was ready for me by the time I got there. I was surprised.. to say the least. They took the doppler, did both legs to the groin. I knew the tech and, although she is not supposed to tell me, she did confirm that there was NO clot. She suspected a cyst of a sort, but could not find that either. In the meantime, my blood pressure is sky high. They gave me 200 mg Torporol right in the hospital. I am only on 100 mg now. I'm sure they will raise it because, although I have not donated the time to bringing down my blood pressure via meditation, I did manage to straighten it out before by meditation alone eliminating one medication. I think I might ask for different exercises not using my left calf. Exercise can bring my blood pressure down as well as my pain, but it seems to be doing the opposite lately. Plus a screaching headache that is neverending and because of the heat wave (94F today!) I feel so swollen all over I'm ready to pop!

There were comments on the forum on how hospital personnel told patients how well they were looking. That is not exactly what happened to me. I did not bother with make-up, I just put my hair up and went straight to the hospital (only 5 min around the corner). Two different people told me I really wasn't looking very well. I looked in the mirror and it looked like I had a slight black eye! Just discoloration with no reason. Gee, I must be mad at myself in my sleep! My blood pressure is highest when I first wake.

I read the cases of all of you above and I am one lucky lady. I'm glad I went because at least I know for sure and can enjoy this holiday. It's Labor Day Holiday here. A day off of work for all the laborers. People usually try to tack a day on either side for a longer holiday. We're lucky to have it fall within a weekend this time. Automatic 3 day holiday.

Gina, thank you for that little test. What a handy thing to know! I did it (naturally) and pain is only slightly greater in the left (trouble) calf than on the no trouble leg. I guess it's a muscular thing. I think that last cramp was so severe it might have actually sprained a muscle deep inside. I just can't think of anything logical that would fit. But, I'm sure the doctors will.

I just know that just one clot and there will be no more arguments with them. I will have to be put on a stronger blood thinner. I was trying to avoid it as long as possible. Lucked out this time. Even though having an MD for a dad is about the best resource you can get, here's a little test I learned that might help him one day.


During a BBQ, a woman stumbled and took a little fall - she assured everyone that she was fine (they offered to call paramedics) ...she said she had just tripped over a brick because of her new shoes.

They got her cleaned up and got her a new plate of food. While she appeared a bit shaken up, Jane went about enjoying herself the rest of the evening.

Jane's husband called later telling everyone that his wife had been taken to the hospital - (at 6:00 PM Jane passed away.) She had suffered a stroke at the BBQ. Had they known how to identify the signs of a stroke, perhaps Jane would be with us today. Some don't die. They end up in a helpless, hopeless condition instead.

It only takes a minute to read this.

A neurologist says that if he can get to a stroke victim within 3 hours he can totally reverse the effects of a stroke...totally. He said the trick was getting a stroke recognized, diagnosed, and then getting the patient medically cared for within 3 hours, which is tough.


Thank God for the sense to remember the '3' steps, STR. Read and Learn!

Sometimes symptoms of a stroke are difficult to identify. Unfortunately, the lack of awareness spells disaster. The stroke victim may suffer severe brain damage when people nearby fail to recognize the symptoms of a stroke.

Now doctors say a bystander can recognize a stroke by asking three simple questions:

S *Ask the individual to SMILE.

T *Ask the person to TALK and SPEAK A


(I.e. It is sunny out today.)

R *Ask him or her to RAISE BOTH ARMS.

If he or she has trouble with ANY ONE of these tasks, call emergency number immediately and describe the symptoms to the dispatcher.

New Sign of a Stroke -------- Stick out Your Tongue

NOTE: Another 'sign' of a stroke is this: Ask the person to 'stick' out his tongue. If the tongue is

'crooked', if it goes to one side or the other that is also an indication of a stroke.

Thanks all, from the bottom of my heart.


1 like

Thanks. Fortunately, my daughter's Girl Scout leader,( that would be me,) had just finished coordinating badge work on keeping loved ones healthy. We had doctors,an EMT and an RN tell us how to ID certain conditions and when to try what first aid and when to call 911. It was the very next week when I had my stroke. My daughter instantly recognized the signs and though I kept insisting I didn't feel ' that bad,' she called 911 and got me to the ER. But iI hadn't heard about the tongue thing. Thanks.


Well said CanaryDiamond, it is hard sometimes. Wishing you all the luck in the world.


I have had 2 above the knee DVT's and both times there were no other symptoms that pain. Both time I was woken up in the middle of the night by pain, not 10/10 pain but enough to make me visit my GP in the morning to find a clot. Good luck x


Thanks for answering, MJLC. I did go for the doppler and it was negative. Next week I have an appointment with my rheumatologist and will discuss some connective tissue and muscle disorder tests. It seems the pain in my long muscles of the legs and arms are getting worse. The heat wave is long gone so i can't blame it on that. The weather changes that happened to bring that about could be the culprit but something tells me it's not the weather that is to blame. I'm stumped and will be glad to hear what is next. Thanks again for responding.




You may also like...