I occasionally get a extremely uncomfortable feeling on my arms or legs. This is not the same as spastic leg syndrome. My arms will just be extremely uncomfortable and the only thing that helps is squeezing them. It tends to happen mostly at night. It's extremely hard to explain I can't sleep or get anything close to comfortable unless I find a wayto constantly squees my arms, which there really is no way to do that. Anybody else ever have these symptoms? My dr thinks perhaps its a stroke or clot that forms in a certain area. All I know for sure is it makes for one long sleepless night. Also, I beleive when it happens my inr is two low. Still very strange an hard to explain. If anyone else has had this experience I would like to know about it and possible treatment. Thanks for your time. Steph.
Hard to explain feeling in arms or le... - Hughes Syndrome A...
Hard to explain feeling in arms or legs. Feels as though they need 2 be squeezed like put into a wood or metal clamp. Anybody have this prob
All I can say is: try to get your INR higher and find out if it goes away when you are properly anticoagulated.
Good Luck from Kerstin in Stockholm
Do make sure you INR and your medication is regularly reviewed, I hope you feel better soon. MaryF
I don't know if I'm even in the same boat as you diagnosis-wise, as I'm still learning about the criteria for this syndrome, but I know exactly the feeling you're talking about! I feel it in my forearms mostly - sometimes higher up on my arms, but not always. I hope someone has the answer to your question and shares it!
I take a good dose of magnesium or soak in an Epsom salt bath and it helps, for what it's worth...
I get these same feelings in my legs and especially arms. Heat makes it worse for me though.
Thank you, I am sorry you have to go thru this but its nice to know its not just me, and that its not just in my head. Don't feel so alone now.
It is absolutely not in your head. We have all had to struggle and fight for this.
Have you read "Sticky Blood Explained" by Kay Thackray? If not I suggest you do so. She has APS and writes about the different symptoms of our illness.Good also for relatives to understand how it is to live with this rare and sometimes very strange illness.
The most important thing is to find a Specialist who can give you a diagnose and also properly thin the blood. He or she can be a Rheumatologist or a Hematologist. The problem is to find that Doctor!
Kerstin
So true.I spent years looking for a diagnosis and only found it because, yet another male dr, was so darn sure I had never had a stroke an nothing was wrong with me. He ordered a ton of blood work just to prove tome and his own PA that there was nothing wrong with me. Turns out he accidentally came across hard copy lab results that proved him wrong. He wouldnt even acknowledge what he had found just told me to come back when I was paralyzed, blind and had unilateral eye pain! I walked out him. Got some of my lab results and went to hemo in cruces that diagnosed me. I still get angry sometimes that because no one single specialist even took a second to concider that there might actually be something wrong with me. I probably would not be disabled and not near as bad off as I am if someone had taken the time to figure it out and get me the treatment I needed.
Sorry kinda went off there. I definitely going to get that book.
I get that too, like my arms are swollen and numb. It usually happens when I am sleeping. It mainly correlates with a sub-therapeutic INR in my case. It is all circulation related. That is my opinion at least. I wonder why doctors are so dismissive and then angry when the patient is right. I mean, come on, not everyone who complains to a doctor is a hypochondriac. I had so many issues for so long, I just ignored them for most of my life. I'm a tuff guy. I only went to the doctors when I could no longer walk. That is how bad it had to get for me to seek out help. I'm so glad you finally got a diagnosis. All you have to do now is play around with your INR levels (under the supervision and guidance of your doctor of course) to find out what level on INR works best for you.
Most of us feel our best when our INR is above a 3.0. Some feel better with an INR between 3.5 and 4.5. It all depends on you and what your doctor feels is safe for you. My doctor gripes about my INR being over 3.0. I just ignore him and adjust my own meds in between tests, as I know my body better then he does. The last time he had me hold a dose of Warfarin because my INR was 4.0, it dropped to 1.9 and stayed low for four months straight. I was having a lot of complications at that time. I had to go to the ER and explain to them that I might have a low INR and am having chest pains and trouble putting pressure on my DVT leg. The INR came back at 2.0 and they claimed it was therapeutic and acted like I was a nutcase. I had to explain to them that a 2.0 for us Hughes patients is way too low, and it can cause bad symptoms. They looked at me like I was speaking a foreign language lol.
I feel you. I have only gone to the ER twice. Once because I fell and bounced my head off a tree-then metal post-then a wooden fence. Im very graceful LOL. All was fine no brain bleed. The second time I didn't realize I was having a stroke until I stood up an put wait on a dead leg causing me to fall but when I took that step my leg didn't hold me and my ankle bent to the point of hitting the floor and cause a loud popping sound. So I go to er with my mom an sister and of course they leave me waiting so long my mother went and tols them the reason I fell was because a stroke. The admissions clerks looked at me then went to the back and out came three other people looking out at me in total disbelief that I could possibly have had a stroke. Lucky me it wasnt broken but put me on crutches and wheelchair for 6 weeks. Outside of that I haven't gone to ER. If I have a stroke I wait it out and then do the best to get on with my day. My PCP and I have agreed that as long as the main stroke passes within 30 minutes or so I don't have to go to ER. What are they gunna do, give me blood thinners. Im afraid they would kill me. Not big fan of the local hospitals. Well thatwas way more info then needed.
Have a great day or as I like to say: Make today a great day!
Steph
I must ask you: Are you on bloodthinners? Killing you?? I thought you wrote about selftesting and Warfarin. There are other anticoagulationdrugs than Warfarin: LMW Heparin is used by many here.
You should probably not have the new oral drugs as they are only prescribed for those on an INR under 3.0 and you probably need a higher INR than 3.0. I selftest and have done several double-testing so I know that the difference is the same between vein-test at a hospital-lab and fingerprick-test at the machine at home. I have Lupus Anticaogulant but others do not have that antibody and then it could be easier to selftest perhaps.
Most important: see to it that you are properly anticoagulated with some sort of anticoagulationdrug. You must not go around with sudden stroke, TIAs for 30 minutes or other neurological symptoms. They do damage to the brain. Never ever!
Kerstin
Kerstin, when u have a stroke and go the the ER. What do they do?
When I had my first stroke in 2002 (ev aTIA or mini-stroke) I did not know I had APS. I left the hospital (stayed for 2 days) with Aspirin 75 mg and was ok for some years. As I have micro-embolies nothing has shown on Scans etc during the years. I am primary APS and I am trippel-positive with high antibodies and have been all the years.
I had my Diagnose and was worse after an operation of my Parathyroid gland.
I had several TIAs (neurological and hundreds of them) for several years The Specialists suggested Warfarin but I did not like the idea of "rat-poisson". After reading "Sticky Blood Explained" by Kay Thackray (she had exactly the same symptoms like I had) I started Warfarin.
I could read again without seeing double and no Vertigo etc and after that everything is about keeping the INR in exactly the right spot. If it is too low I notice it at once and the symptoms starts again.I selftest and decide about my dose. I have a therapeutic level of an INR between 3.5 - 4.0
I have Ecocardiographies on my heart every year because I have got Pulmonary Hypertenison and leaking Tricuspidal- and Mitralvalves. Probably had a lot of micro-PEs. I had very high blood-pressure before Warfarin, even with heart/bloodpressuredrugs. I still take those drugs but my bloodpressure has calmed down and it is usually normal. I have a machine so I can control it when I feel for it.
Everyting with this illness is to thinn the blood and keep it steady also at the right level and get the help from an experienced Specialist who knows what APS is. Otherwise APS will be very difficult.
Kerstin in Stockholm
As to your question they can not do anything as nothing is seen on a Scan. But I have come in with chestpains and high bloodpressure and they take all bloodtests and Scans but as I am a well-known patient at that hospital they look into the pack of journals that if my INR is in the right spot I can go home when I feel better.
Kerstin
Kerstin
yes I take warfarin right now I am on 12 mgs daily plus the 75 plavix. I got my inr results yesterday and itts 2.28 way to low. I had it done at dr office but because I told them I needed the results ASAP as I was systematic. They said they send it to local hospitak so they would get the results in an hour. I had the blood draw at 8:40 a.m. on Wednesday and they did not get my results until yesterday! Don't have much faith in my local hospitals. They are not very hi quality. As u can see a STAT INR took more than 24 hours for a STAT INR. I used to self test but my insurance changed though I have the machine my ins. Will not pay for the strips an they are to expensive for me to purchase on my own. I have multiple infarcts n my brain that show in mri's i had a major PE back in 2003 I think. I did not go to dr because I had not insurance. Jt was peek allergy season and I was coughing a lot I just figured I had coughed to much an in wrong position and really made my muscles angry. I have a high pain tolerance but that pain was really bad but I had two young children and two jobs worked about 11 hours a day. I didn't have time or reason to think it was anymore. However breathing was hard and the pain was constant took about 2 months for it to go away. Years latter I have an exray, due to car accident and after more testing it wwas determined that it was a PE but no longer actve my body closed t off. No air in no air out. We just leave it be as my hemotoligist said to. He is the one who diagnosed me, though he did not give it a name. I don't think I quit fit in tye APS as I two have the 3 positives but I also have problems with my Protien S & C, my hemosisten(bad spelling) is elevsted as well as some type of gene mutation all cause blood to clot. U said u go to er they realyn test and then u go home when u feel better. I have a strong dislike for ER's as I have had only one decent experience in one. So I skip the blood work and scans since I know what is causing the stroke and wait it out on my couch, or floor if there nobody to help me up at the moment. Then I get back to life, as best as I can when its over. I will go getf the symptoms don't improve or continue to get worse. I usually have an after effect that can last for datys occasionally weeks such as weakness on the side of the body effected, more balance issues, vissual and well you know. So u and I basically get tye same result we just go about it different ways. I don't know how insurance and healthcare works in your area or where u live. I just know I can't afford to run to the ER. I do better now then prior to having the two or three holes in my heart (PFO &ASD) closed but I do still stroke sometimes. I have an unstable INR no matter what I do it goes all over the charts. Up down up down.I take my meds stay away from Vitamin K. But stll have unstable inr so sometimes I still have a TIA here or there but do the best I can! Like you when its out of range I adjust my dose as needed. Still need to order that book. I keep forgetting. Lol very little short term memory here. I can recall conversations that went on around me when I was 3 but often no clue what i just said. I promise I will go if TIA doesnt start clearing or gets worse after 10/15 minutes. I sorry for the long winded reply but hope it makes some sense.
You should ask for a trial of 6 weeks with LMW Heparin. I have heard of those on both Plavix and LMW Heparin.
Warfarin with that unstable INR is not helping you much. You should not go on having a lot of micro-embolies and clots. Have you seen a Hematologist about your other blood disorders?
In Sweden we have a healthcare system equal for everybody no matter what income you have got. We should be very happy about that!
Kerstin
Im very happie to hear you have such a wonderful health-care system. Ours isnt very good if u are well off financially you can afford better insurance and therefore better care. If u arent wealthy, just working class like me ur options aren't great and u r lucky if u have insurance. Do you have really long wait times for dr .s and specialist?
Those times when I had chestpain and was taken to hospital I had a bit low INR. So when I came home I took a little more Warfarin and did not eat so much broccoli.
We have followed the American election here like it was our own election. They talk about Obama-care and today I am going to read about it extra in the newspaper what it really means. I know you have difficulties in your country and I am so sorry about that!
What is special for Sweden is that we have a system equal to everyone and our country is wellknown for that. We pay an amount of money for seeing a doctor and it you have to go often then after a certain sum of money the medical care is free of charge up to one year. Then it restarts again.
The same with drugs. After I have payed drugs for perhaps 3 months (I talk of myself now as I have many drugs) the rest of the drugs are free of charge. Then it restarts again the next year. If you pay very expensive drugs it does not take so long time before you have it for free. That is only drugs on a prescription from a doctor. But we pay a lot of taxes in Sweden. People with good jobs and money pay more taxes of course.
I like our system; that helps those who are very ill and have not so much money.
I have had my Hematologist since 2005 and my Rheumatologist since I think 2008. The same hospital all the time. I feel very secure in their hands. They know me, believe me and try to help me. Before that time I had several doctors and it was a fight to get through to those who knew APS. At that time I did not now myself much about APS .
Try to get a trial of LMW Heparin because you should not accept those TIAs for up to 30 minutes. My many TIAs were only 3 - 5 minutes.
Kerstin
The election, what a sary mess that turned into. Im still dumbfounded that someone like trump could even run an ashamed in my fellow Americans for then actually voting for him. The thought is scary I can only pray that trump goes back to his democratic ways. He was elected by hatred and fear mongering. I am concerned for all minorities as well as women and my fellow disabled americans. Trump did not win the popular vote, Clinton did. However are countries insistence on using an out dated electorial college system u don't have to get the most votes just the most votes from the electoral college. America has not needed an electorial college in 80 to 100 yrs. But its a rigged system. Also President George Bush the second was president for 8 years and like Trump never won the popular vote. I do not understand my countries insistance on continuing the electoral collegeas it was useful and needed back whenthere was no real way for everyone to vote and it be counted. That time has long since passed but its helpful to the republican party so it continues. To clarify I love my county but the amount of hate in so many is a sad thing. I have never judged a person by their heritage. I generally can get a good feel of a person's personality and trustworthyness from 30 feet away its in how they mustve and carry themselves. It may sound odd but many bad experiences in childhood have taught me to trust in my instincts and in my 45 yrs of life they have served me well and I have never been proven wrong only proveb right when other people disagree and try to bring some people into our lives sooner or later my instincts are proven right. Anyway I hate to admit this but I am a chickn head when it comes to shots and dentists. I would rather give birth than either of those. I dont mind blood draws, IV's or evenbeing shot up with radio active die. But I hate shots. I been reading on people's experience's with lovenox shots and not sounding real fun. Im ashamed to be a shot chickn but I am. What is ur experience with the shots? I was supposed to have a hysterectomy last month but put it off due to insurance issues and health issues. As I stated before in the last couple months I have had at least 3 TIA's and didn't think it was a good time for surgery feel need to get my body right before anything else. Again. I do love my country, its just I have never understood racism even though I grew up around some family members that r racist and even when I was young I questioned them and pointed out that there is nothing to fear, racism is grounded n fear and superiority, from different people as well as all Americans have by birth the right to worship as they please, or be with the person that is right for them. I don't fear the differences I like to learn from them. So Trump winning on a campaign of hates, misogyny and fear, sexism. May all the God's bless America an keep us strong in these ruff times.
Interesting to read what you have written!
I have done veindraws of blood several times. I am used to it and want to know my INR. I have one daughter who has difficulties to get a blooddraw. Difficult to get to the vein.
As to Fragminshots I asked APsnotFab as she has done several and she told me to try at an orange at first.
I did that and and then in my tummy (with a new shot of course). I did it very very slowly as she had told me and stoped if it was some sort of pain and did the rest after that. I did not withdraw but stayed still for some seconds. I withdraw very slowly when all was in my tummy and then rubbed the spot very easy and carefully. Hope you understand what I try to tell you as my English is not the best! You can read about it somewhere. The orange was very good though.
I do this when my INR is too low. Not every day at all.
I think you could do it. It hurts very very little. Nothing to be afraid of. I want my INR to be correct so I do not get more clots or PEs.
Kerstin
Thank you very much. Also have no problem with ur english if u have any with mine just let me know and I can clarify. Sorry I went off the subject and talked about the election. I just wanted to be sure people outside and inside the USA understand Clinton won popular vote. Just to many old mean and unger tush hole men that say "they ain't taken orders from no women". As far as we have come we women are still not equal to men in this country. I was hoping Clinton could help change that. But to many mem fear the abilities of women and are intimidated therefore they have to keep pushn us down. Thank you so much for the advise. Hope you are doing well and continue to do so. ☺
Steph
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