Sticky Blood-Hughes Syndrome Support

Bad joints

I asked my gp if I could be referred to the rhumy in Burton? but he said why get another doc' involved I may as well wait until my June ap' in London :( I understand but I just feel I need to talk to one about my joints.

I have always been in pain for many years with my joints, but they started to worsen approx. 3 months ago.

I was putting up with my feet, knees, elbows & now my back in that time as I had just assumed it would pass once the weather got better!!

Well it hasn't & I'm used to my back going as it has since I was 13 years old, but this ones different...instead of the usual middle / bottom of the spine pain & then a trapped nerve down my right leg (I have degenerative disc disorder) the pain went down the left side of the bottom of my back & the pain shot down my left leg? he says if it continues he will send me for xrays to see what the discs & spine is doing now :(

Also the pain in my elbows I thought may have been tennis elbw but he checked for that & he says it isn't?

I asked about arthritis & he thinks it may not be rheumatoid arthritis but it could be oesteoarthritis........maybe due to the vit. d deficiantcy?

Inr still going down instead of 2.8.....

My knees are always quite week & crunch & my feet can be so painful at times when I first get out of bed or get up off a chair?.....

Oh well I know I'm still not as bad as some but I'm so sick of the pain.

Hugs to all my Hughie friends xx

20 Replies

Hi Suzy

Sorry you having a rough time of it, the doc may be right about the Vit D and your INR being low will make things worse, I know how you fel on the pain and it can get you down!! Nothing worse than feeling that crappy and the Doc will not help!!

One thing i did was I called St T's up and explained the situation and asked if i could have my appoint me brought forward or asked if the doc would refer me to the pain team at St T's and they did and they were great we still trying diffrent things, so ask the st t's lot you have nothing to lose

If they say no i have another option i will messge you if the above will not work, not technically the in thing but it worked.



Yes a good idea to have the appointment brought forward, if you say how bad you are feeling they will, probably. Re Vitamin D... find out asap what you can have etc etc .. it makes a huge difference to so many people.

this sort of explains it somewhat. Really hope you feel better soon. x M


Hi Suzy

Vit D deficiency can cause a pain in the joints as well as a whole host of things. It really is important especially with Hughes to get yours checked and I don't see why your GP cannot do that as a matter of course. They could get you started on that or even give you an injection of it to give you a real boost as my GP did.

From some of your symptoms I am wondering about FM if none of the other tests come back positive. Fibro seems to run along side Hughes with quite a few people sadly.

Also have they checked your Thyroid. Some of your symptoms could be related to that and if you are Vit D deficient that would also play apart with that.

So sorry you are having a tough time and hope you start to get things sorted and feel a little better soon. x


Thanks huns,

Yes I was wondering if it could be fibo' & vit' d def' myself for a while, I was already told pos' fibro' for a while now but still not been reviewed!!!

My son came back with some vit' d tabs' so thinking of starting them....or should I be tested first?

I'd like to move my app' forward but I dont want to rock the boat with the neuroligist as she has changed her usual day she works to coincide with the specialist's day so I didnt have to travel twice, so I shall leave it as that was good of her. :)


Hi Sue,

if it is really that bad the nerolkogist will understand if you need it ask for a forward appointment docs understand and you cannot last that long also i would get checked first as taking the vit d tabs will change your result and at least you will know if you over or under as i have spokjen to a mix of people who have both. The fibro is also an idea to look at .



Thanks Paddy, I will look into it.


I told my gp i thought i had fibro but she told me its what we give to patients that we can't get answers to. I showed her my swollen elbows and she did not answer and said tell the hospital.St thomas are generally good but I can't get them to understand about my whole body hurting mainly arms and legs locking of joints .I've also noticed s lot of crunching when i move around the feet and shoulders.I've got physio in two weeks and I'm going to tell them.


This is exactly what I get .... I certainly need to push for answers & for fibro' to be taken seriously, hope your ok . Let me know how your physio goes.


hi suz- sorry i couldnt get rite back , my comp had a melt down on me . but i think its over it now - my rheumy says oesteoarthritis and aps are common whit many of his people. i gave you a run down of some of my problems , if you got them as i dont know exactly when this old blister started to mal function?- hope you start feeling better hon , ---------------- jet


I got a message with yours on & we answered back on them....if thats the one you mean? I know these flaming comps'!! :)

I'm sure I'll be ok soon, dont want to moan as I know I'm not as bad as some :( I just hate it as I'm so independant & have always just got on....probably because I dont have much choice too sometimes!!! even turning a tap has got worse than it was....hand crunches & get shooting pains.....

anyway how are you? chat anytime you want, Sue :)


thanks to all of you for your reply's, I agree with you all I think it is a big possibility to be fibro' or oesteoarthritis, I need to make an app' again & mention this & push it, yep my joints crunch really bad too :( the stand - in keyboard player at the gig last night shook my hand as he was leaving & I didn't let it show....but my hand crunched real bad as he did it!! He was a really nice chap so I didnt want to say anything :(

( I dont know if you know this 80's band....but he actually played in 'Dokken'!!!! )

I was in quite a bit of pain whilst taking my images of the band as I do, but I just get on with it as I would hate myself if I didn't get the shots needed after travelling down there with them! ( I was on tramadol ) it was a good night tho' :) On my table I had my own 'lap dancer' !!! a guy would'nt stop dancing on my table! another guy about the same age ( 22 - 26 ) asked me if I would like a dance!!!! they need to go to specsavers!! :)

Oh I do get to see it all.....its a laugh :)

I will wait to be tested before I start take any vits' it makes sense to do this. xx


good morning- princess of light-some of the photographers , that i have seen work , have to be a contortionist to get the angles they want? that must put a strain on the skeleton ,i am sure if i tryied to get in those positions between my hips ,knees , ankles and fingers it would sound like [ snap -crackle -pop] . my knees are probably the noiseist. its funny that the knees and ankles make all the noise, but its the hipps that really hurt. thats the a.v.n.- which rheumy says is directly related the the huges. ok !! you got me wondering what in the world is [ specsavers ] your inr is at 2.8 -what is your target range ,and where in that range are you the most comfortable. ? when i had my emg and the others done that day the dc said i have the start of carpal tunnel, offered my some sort of brace for my wrists but i declined them, gotta find out about this breathing machine i need for sleep apnea- they are suppost to be contacting via the e-mail , thats why i had to get this old blister working again before this morning, as i not sure when they will try to contact me. got to do inr this morning and also try to straighten out some appointments i had to change to do sleep study . keeping up with all these changes is a royal pain, an not in the hipps either . they have some really messed up - o well hope the old bones feel better soon for you . --------------------------- jet


lol....specsavers is a specticle shop! so they say 'you should have gone to specsavers' in their commercials on tv because of their sight!!!

My range is 2.8-3.5, anything below 2.8 normally & I start to have extra brain fog I'm not too bad with that at mo' but it should be going up not down as they keep increasing my warfarin dose but its not going up!!

I hope you are ok with the machine as I know my friend is struggling with his, but hes now asking if theres another sort as it keeps him awake at night with the noise! he feels he cant win :( good luck with yours, it may be a different one anyway :)

Asked one of my gp's thats very good earlier via phone about having a vit' d test....& she agrees with us!!! :) she's lovely :) she's sending me for that to be done also Thyroid & oesteoarthritis.

Hope you all good x


hay my pretty - cant say ive ever seen that comercial here in the states , my range is 2.5 to 3.5 but i feel best like 3.3 most of the time. when you see your lovely doc you tell her i said thanks for taking good care of you. you can even give her a hug for me- hugs are great , good for the heart and soul - i always give my women docs a hug at the start of my appoinments and now if i forget they remind all started with my lovley doc mcall- god i miss her i dont think a day goes by that she doent enter in my thoughs, i was e-mailing her but all of asudden she stopped and i cant get in touch with her.[ that stinks rite out loud ] my nurse tiffany that just left my practice see s her and was going to tell her to get in touch with me .but as of now nothing - it may bring back to many memories- as we became good friends, she got horribly sick real fast, when i ran into her at blood, lab i didnt even recognize her she, had lost so much weight, we stood in the parking lot hugging and crying, enough of that i dont want to get upset again . hurts to much . i just hope she well and happy----------------------------------- me


Aaahhhh...poor do have a big heart dont you.

I hope she gets in touch one day soon.

I will give my doc a hug when I see her for you! :) unless I'm threatened with being arrested or be put in a white long sleeved jacket that ties around the back!!

I'm surprised I've not been in one yet!! I felt like I was going out of my mind again last night!....I couldnt find where I'd put my night time tablets before I went to took me 1/2 hour till I found them....I looked in the cupboards, fridge, bread eventually found the bin!!! :)

hope you ok bud, I'm off with the girlies to see our Sheena tonight :) see if we can cheer her up :) hugs :) Sue.


the hugs are for you- everybody likes hugs , i think ?? it makes people smile on the outside and the inside - glad you found your pills - i do the same thing ,put the milk in the cupboard , put the icecream in the fridge not the freezer. look all over for my glasses, they are hooked on my shirt inches from my nose,. have 5 pairs of glasse sand they all end up in the kitchen, i feel im losing it sometimes also, but im told you cant lose what you never had . i am now starting to believe them. forgetmenot---------------- jet benny


Ha ....I dont feel so alone now Benny!

ShallI give Sheena a hug for you too? :)


give all hugs, it will make you feel better also, but the hugs you share are special- sheena deserves big hugs , at least she wont put you in straight jacket.take some pics and send them to me. always love pics .take to you later if i dont talk to you sooner!?!?!? ---------- benny and the jet ps make that hug to sheena a big one and she can give you a hug for me - iether way is a good thing- i shuold be able to feel them here.


Hi jet

sending big hugs your way hon.

Lovely to see the girls here, thanks suzy.

Take care gentle hugs love Sheena xxxxx :-) :-) :-)


Loved coming to see you hun, thought I'd already posted this? ho hum....probably just me!!!!!

Hope you are improving now hun?

Gentle hugs to you xx


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