joint and musel pain

[clairegrinddal]

i have hughes and i cant walk some days i have soo much pain in my joints and musel loss my balance all the time.. drop things.. have bad mygrains i am on warafrin and my inr is about 2,5.. i am new on here... have alot off pins and needels in my hands and legs feet.. i am always sick... and so tired..

[MaryF Administrator]

Hello, there, I hope you have a good rheumatologist and some good GP support. Others on here will talk to you about INR levels, not my area of expertise only being on aspirin. However the symptoms you describe sound very familiar to most of our members and I hope you can find some jolly good peer support on here. Best wishes and I do hope you feel a little better soon. Come back to us if you need more advice! Mary F

[paddyandlin]

Hi Clare

Welcome to the group i am sorry you are not feeling to good. The symptoms you describe are mentioned by many people in here who has Hughes. Are you under a specalist? Regarding warfarin and INR Professor Hughes says that having a INR of 3 - 4 seams to aliviate some of the symptoms. If you have joint pain another medication you may want to ask about is plaquinel is has been proven to aliviate some of the symptoms you have mentioned.

Please ask away and we can try to help .

paddy

[MaryH]

Hi there,

Like yourself I had the worse joint pains ever. After having a stroke there was a gap between stroke and diagnosis. That was the worse time, before I went on warfarin. The pain in my head felt like explosions, I know that sounds over the top, but I actually looked up 'explosions in the head' honestly!! I dropped things and was just in pain and generally weak. Then I was told that I had to have an INR of between 3.0 and 4.0. The change was miraculous, overnight the headaches disappeared and gradually the joint pains diminished. Like others I seem to know when my INR has dropped. So maybe you need to have your target INR looked at. Much love MaryH xxxx

[jessielou]

Hi Claire

Welcome and glad you found us. Your symptoms will sound so familiar to many on here. Inr problems too, mine is up and down all the time, when its low everything hurts and so tired. When its high I feel better, but too high and I feel dizzy and strange.

Do you see a specialist, rheumy, heamatologist?

A lot of us on here have been to St Thomas`s in London, they been fantastic with me and really helped.

Second what Paddy says about the Plaquenil, its helping me.

We are here when you need a rant, moan, vent, or share the good and the bad.

Take care gentle hugs love Sheena xxxx

[Manofmendip]

Hi Clare

Welcome to the group.

I concur with the others above. Professor Hughes told me to have a target INR of 4.0 and that did stop a lot of symptoms for a long time. I've been having some strnage incidents again though and I'm seeing Prof Hughes again on 15th Feb.

I may be worth considering self testing your INR and seeing if your GP will allow you to adjust you own dose, my GP does and I don't know what I'd do without being able to do that.

Best wishes.

Dave

[clairegrinddal in reply to Manofmendip]

i live in denmark and would like to see doctor huges.. thay now shit about hughes here i denmark

[paddyandlin in reply to clairegrinddal]

Claire that is the issue around the world this illness is not as well know as it should be

paddy

[clairegrinddal in reply to Manofmendip]

i live in denmark how can i get an opountment to go to see doctor hughes..

[paddyandlin in reply to clairegrinddal]

Claire

best bet is do get your doc to refer to see Prof Hughes as he main does private work now at London Bridge.

Paddy

[clairegrinddal]

thanks everybody .. i live in denmark, and sadlig

hughes is not that nown over here the doctors dont sime to now enything... i cant no longer work.. some days it just hurts every were . i also get pain in my stomik and organs..some days i feel like i am dying slowli. i have a great doctor here and he has read alot about hughes on the internet. but other docters dont now enything so not much help to get over here..hate this illnes. hate when it flairs... but dont have meny god days enymore . soo some tims its hard to stay posetiv.... but soo happy i found you all on here .. jubii for the internet and computers....

[Skyllark]

there is a therapy that my wifes pain doc uses that uses something new - its a high powered LED hairdryer... docs name is Dr. Richard Henery(Kingston General Hospital, Ontario, Canada) he is a pain specialist... knows his stuff and has a great sence of humor!

[SharontheSheep]

Hi Claire

I recommend you buy the books from the Hughes website and then go about educating every doctor you meet. I found Dr Hughes book brilliant and really easy to read. I find this site brilliant when I'm having a bad time cos whatever I'm going through I know I can come on here and find someone else to reassure and support me.

You have an amazing health service in Denmark (saved my brother's live 16 years ago after his brain hemmorage), I am sure you are in very good hands

You are very brave and stronger than you think,

sharon x

[clairegrinddal in reply to SharontheSheep]

maybe 16 years ago.. but not now...its in the news all the time lately... 2hopitals patients all got food poisening.. long long waitin list. hopitals are so dirhty.. its got really bad the last yers...and in denmark thay dont se hughes as a illnes...and dont now wnything about it....so me and my doctor is going to byedoctor hughes book.. some days you feel strong and some days not so strong.. love claire

[clairegrinddal in reply to SharontheSheep]

do you have the information to doctor hughes site soo me and my doctor can bye the book...claire

[SharontheSheep in reply to clairegrinddal]

Sorry Claire have completely forgotten the actual site address but it is the official Hughes Syndrome Foundation and KateH who is the one who puts all the Foundation blogs on this site is the main person at the Foundation so if you message her she will be able to give her all the information

Sorry not to be any more help - this brain is such a nuisance at times!

Love sharon x

[clairegrinddal in reply to SharontheSheep]

got kate ony faceook so willask here.

[paddyandlin in reply to clairegrinddal]

Hi Claire you can buy some of the Prof Hughes books on hughes-syndrome.org

[christinebonner]

the last few weeks i have bad back pain that is now round my kidney area i saw a gp and she said i have twist my back if no better in 8 week come back, she did not even look to see what my medical history was and started asking why i was on HRT and hayfever tablets all year

[clairegrinddal]

get the same pain a lot.. got the same answar.. as you.. and she dident evne look at my medical history ... were do i bye the book docktor hughes

[paddyandlin in reply to clairegrinddal]

claire you can buy the books form the HSF shop at hughes-syndrome.org

i hope this helps

paddy