Hi Guys Need some advise,and if anyone else is going throught the same,ive Fibro had it now for 5yrs,or even longer.
I started to have probs with my fingers first tiny nodules which are painful,and my hands get a rash on them and very swollen,and at times weak.
Well the same is happening to my feet,they are on Fire,and my toes hurt so much,and its progressing to my Ankle,and my wrists.
Ive had a look at osteo,and rheumy,and there is a difference,but i am so stiff in the mornings,it takes an age to get of bed when ive rested.
Also which is coming more frequent is when ive rested on quite a few times and is getting more frequent,is i cannott move and i mean everything just wont move,ive called out,for help but nothing comes out,theres only my brain thats working ok,its freaking me out,as it can take up to half an hr to actually able to move again.
Please i would appeciate any sugestions on this matter.
Your last symptom really concerns me. I don't know of rheumatoid arthritis people who can't move or even call out for help. I may be wrong on that but to me it sounds like something even beyond rheumatoid arthritis. Let me google and see if I can find anything similar.
Does the inability to move or speak come when you're trying to awaken from sleep or are you awake? Seems like the latter but I want to be sure. The former would be a sleep disorder.
I think the overall symptoms sound like osteo, but the rash and the spreading of pain is pointing to something else. I would lean toward your Lupus diagnosis being involved in those things. Have you seen your doctor lately, had blood tests?
I think you should try to see the doctor soon, this isn't something you want to get out of control !
Thanks Petunia,its when im resting it happens,its like my body is heavy and i cannott move.im going to see my pain doc nx mnth,i hope he can shed some light on it for me.Thanks for trying to get as much info as you can,ive looked at some reasearch,and there is some thing simalar,when you have lupus,my bloods showed i had lupus,as my doc came to my house to tell me two yrs ago,but reapet bloods didnt show any thing after that first test.Specail hugs to you,and i hope i find you well. Kathy xx
Hi Renie,thanks for the reply,i was diagnosed with lupus 2 yrs ago,my doc turned up at my home to tell me my bloods were showing lupus,but the rheumy doc wanted more bloods doing and they came back negative,and they have ever since,i have all the symptoms,not being tested so im at a no win situation.and struggling every day,i have vasculitis which is assocaited with lupus,and im finding that so painful.Im seeing my pain doc again nx mnth so im hoping he can shed some light for me.But its like most people you dont always get a doc who spends time with you a
Keep pushing them Kathy. I know it's harder in the UK to get into the specialists, but there is such a thing as having negative blood work while still having the disease. I know a lot of people that come up negative, but they have been positively diagnosed based on the doctor's exam.
I just posted a discussion on seronegative results that I found. Not many people believe in it !
There are at least 2 women on site who have both OA and RA. Not trying to diagnose you, it's just possible. It's worth asking the Dr about. RA can be treated with the new biologics! Time to get after the Doc and get some further answers.
Kathy, I invite, as well as urge you to join our new group, 'Fibromyalaia and Arthritis'. We are just getting it started, but already there is good info and many stories to relate to. Just click groups at the top of the page!
Wishing you well,
SK
I have Psoriatic arthritis, so I understand the pain and fatigue, and loss of motion!
Hi and thankyou for your response,ive joined the other site,and i will certainly be having a look,i think i will get alot out of this one as i know i was diagnosed with OA when it was just in mmy fingers,but it has progressed,and with looking at research,im sure i have RO as well,and it is in my family.
Ive had a rash on my back now for 4yrs,i was at first daignosed with shingles,and then it just stayed.
If you dont mind me asking,what is Psoriatic?
Wishing you well too,take care and thanks again,it means so much to me!
Psoriartic Arthritis is what I have, though I do not have Psoriasis. It is not unheard of but not very common. Kathy, these are examples of very serious cases, it is not always this bad, I will show it to you and hope that they are not too upsetting.
Though I do not have the skin rash, I will gladly do my best to answer any questions you may have on psoriatic arthritis. There are 4 types, I have Spondylitis. I did a post on here recently on Psoriatic arthritis that you may also find helpful.
I hope that you soon get a diagnosis, sometimes you really have to be agressive with these Doctors!
Hugs,
SK
Osteo is a vey painful kind, do not discount the damage and pain this can cause!
Hi,thanks for your reply,What the devil is it???it freaks me out have you had a diagnose in relation to it,ive looked on the net but cannot find anything.
I will keep searching and get back to you asap,take care my fellow sufferer
Yeah, I looked and looked and kept coming up with "sleep disorders," in other words, this happens when folks are asleep. But for some reason, I was thinking "lupus" too - must have been something that I read on one of the lupus boards. Sure enough, I went to a lupus board and found what you're describing. Apparently it could be a seizure (Note: I'm not a medical person.) Here's the link, start reading at "Mumeva" and you'll find these symptoms:
Thanks for the link, Petunia, but this doesn’t sound the same. It is very hard to describe but it feels like you can’t move when you probably could with a huge effort. I never lost my ability to speak (what a tragedy that would be! LOL). It doesn’t happen to me that often and hasn’t happened in a while. It mostly happened at the beginning of all this before I realized something was really wrong and it was going away so I slowed down some.
Hi Petunia,i did the same and got sleep disorders,and then i put all my other syptoms in and lupus came up,and Peripheral Neuropathy,and it fits my bill,unfortunatly,i am going to my docs as soon as i feel well enough,ive the flu at the moment {dont have the flu jab as i had a adverse reaction to it a couple of years ago}in fact if i feel the same tommorow,i might just ask him to come to me,IF THATS GOING TO HAPPEN!!!,thanks everyone i do so much respect your help x
I looked and came up with sleep disorders,on med net,and you follow the links with all your other illnesses,it breaks the syptoms down,anyway for me it most definatly gave me Peripheral Neuropathy,and all the syptoms i have,so at least i know what it is,ive vasculitis,and ?lupus,all the syptoms and no treatment,my life at the mo is hell,im certainly going to see my doc,once i get over this flu,Hope you find your symptoms,and can identify,what your paralise is,thanks so much for your imput,and helping me!!!
I will Renie,im going to put and demand they listen and at least treat me for these horrible illnesses,im just banging my head against a brick wall,i go and see a doctor,its a different one every time you go,and they say well your bloods are not showing any inflamation,or infection so you must take these painkillers,and the lastest is morphine,which i do need for my failed spine surgery,and lyrica,and amatrypceline,and they think that is enough,im not even getting any treatment for my vasculitis.
Ive looked at the tread,and sounds just like what im dealing with.
Thanks again,hope you are having a relatively good day