need peeps help those who suffer point the way

[pauluk60]

hi fellow sufferers hope you will get me going or tell me where i am heading please bear with me as i have just come out of bad flare week 10 days wow thought i was done for so the docs/specialist they say i haven't got Ra but the way i feel its more than osteo that's what they say i have but i don't want to sit here getting worse and doing nowt about it scared to of four walls and looking at bird feeder so i am due to go to rheumy again in November so can i give you lot my symptoms and c what you think please at the moment knees crunching giving way swollen and aching fist feel tight when clenching aches/pain across shoulders then the FATIGUE is something else for two or 3 days gone to the wind right foot ache and cracks and other bits and bobs crop up too many to remember get completely despondent then to cap it all someone in physio who is about 20 nothing saying loose weight exercise if it was someone in 50s ok but how can they understand your scared of doing damaged that you CANT come back from what mobility i have i need ok put that to you all if you dont mind thanks for any replies

[sylvi]

First of write down all your symptons so you can tell your rheumy when you go. Like where the pain is,what joints are swollen and how they affect you. Also write down about fatique and exhaustion and how it makes you feel. How your general health over all is what you can and can't do darling. When do you feel the worst nd when you feel the brightest.

Hope this is of some help.xxx

[pauluk60 in reply to sylvi]

hi sylvi i am trying to put a month dairy together for them i am so glad i came here lots of good peeps

[Hidden]

Hey Paul, looks like you’ve got a lot happening there, and it sounds quite overwhelming.

Like everyone else here, I’m not a doctor, physio etc. However, I can advocate for your health as a consumer. So, you should expect someone like a physio to have some sensitivity about your condition, and how you feel about it.

I agree with Sylvi, get your thoughts organised and written down, so when you see your Rheumy - everything is clear. If you’re feeling really fatigued and foggy, get someone to help you put it down on paper, ipad or whatever.

I don’t want to offend, but you do sound like someone who could use some help emotionally as well. We all can get struck down by fear, anxiety and what does the future hold, so if help is available there, then go for it. I do, and it helps me to maintain who I am, which is not about RA - thoughts offered in all sincerity, cheers Deb

[pauluk60 in reply to Hidden]

hi YanniBaci i wrote a reply to but it as gone read and taken in hope this goes

[Gnarli]

You sound so down at the moment which is understandable given your symptoms and I feel for you. We obviously can't diagnose, just share experiences. As said before keeping a diary with photos provides helpful info for the rheumy. Have they said why they don't think it's RA? There are so many nasties which could effect you in this way it could just be a question of investigating until the cause is found because there is something wrong giving you these problems. Please keep in touch

[pauluk60 in reply to Gnarli]

gnarl thanks main thing was bloods and my own doctors assessment they at rheumy took no blood just physical exam and today is one of the best days for a long while seemed to calmed it down mixing painkillers nefopam /tramadol also ibuprofen taken lightly not supposed to take but it does work but thank you all for replies it has lifted me that someone knows whats going on wife does not agree with all pills but some i read that if i dont get on right meds it doing damaged and no one wants the four walls and chair used to fishing and long walks the longest walk i do is to bin in yard but haven't done for weeks

[Gnarli in reply to pauluk60]

Please try not to stress, easier said than done I know. If you can bear it stopping painkillers a few days before your appointment will show them what it's really like for you. You seem to be taking a heck of a lot of tablets at present and I understand why but, go steady. The last thing you need is a trip to A&E to get pumped out and overdoses can't always be reversed. Not wanting to scare you but a relative took too many paracetamol and tragically died three days later. I'll keep my fingers crossed for you

[pauluk60 in reply to Gnarli]

hi gnarli no i am ok that way i have accepted life's changed and still enjoy it feel pretty strong hard to believe i am very o/weight have lost 8/10 stone twice but that was with lots of running and exercise this is great peeps listening to to what i say

[nablur in reply to pauluk60]

Mixing those meds can also affect your liver and your emotional state. Try to stick with one if you can.

[Mmrr]

I agree with all thst has been said by others answering your questions. Have you had your bloods checked for RA markers ? But remember even if they are negative - you coukd still have RA. Your rheumatologist should explain the diagnosis they have come too and the reasons for it.

[pauluk60 in reply to Mmrr]

hi mmrr from what i understand only was done at my doctors to which he said i did not have it the main thing i want is to b on right meds so dont get worse

[Kram48]

Your inflammatory markers and white cells go up and down but even so they can tell with one blood test even if they are low so only one blood test is required from what my consultant has told me and she is highly respected and valued at my hospital pauluk as it can be extremely painful on the joints but can also affect your heart and brain your lungs as well which people really do not believe my RA has started to affect my breathing and I've had RA for nearly 9 years now and why I am extremely lucky compared to a lot of people suffering with dreadful illnesses it isn't nice suffering with this disease because why I won't allow it to beat me it has affected my life in a very big way as I have very severe RA

L

[pauluk60 in reply to Kram48]

hi kram thanks for info i was wondering what is effected i it case of whats not i have two major {faults] car gas boiler car would not start a few times took it back too dealer cant find anything even girl on reception chirped in some cars are like that to which i nearly lost it in the after 3rd try he said he would keep it gave me courtesy car he had it 3 weeks using it daily till it died on him said they changed spark plugs been ok since boiler would not heat water properly time and time again they come homeserve in the end sent for ideal the boiler maker mech came down stairs nowt wrong with boiler sent for british gas who turned the gas pressure up now cant put hand near water what i am going on about all were specialist or so they say with gleamy tools overhalls computer testing m/chines and still got it badly wrong sos for going on

[pauluk60 in reply to Kram48]

hi kram these last 3 days a big cloud of doom as lifted but i dont trustit not to come back with vengence at least i dont have rely on peeps for hygene but cant say book hols or go futher than tescos and there scooter main day our thieving beggars pinched 2 so that was stuck in car waiting for a non believer thinks no pills putting it on HONEST wait till she falls down stairs again i am cruel theirs no help from her

[helixhelix]

Osteoarthritis can be truly horrible. It can be far worse than just a twinge in your thumb. So don't feel you are being fobbed off with a diagnosis of osteoarthritis (OA) if that's what the conclusion is. As others have said, keep a diary of your symptoms for your appointment.

I have osteoarthritis and Rheumatoid arthritis. And the physio you saw may have been young, but loosing weight and exercise are the best things for arthritis. I have to exercise daily or the pain gets very bad. And if you are scared of loosing your mobility then you must keep things moving. Look up "range of movement" exercises for arthritis as a good starting point. And if you can do lots of walking.

[pauluk60 in reply to helixhelix]

Sos I can just. About walk and don't want to loose what have got had bad flare and it took a lot mobility with it I think you need to step back and think what could happen I have line where I know its safe to do exercise and not I could go on and on but got to remember everybody different one wrong move house bound not pleasesant

[helixhelix in reply to pauluk60]

yes everyone is different, and certainly don't do anything strenuous. But range of movement exercises you can do sitting down, and I know from experience that it's easy to get onto the slippery slope of immobility. The less you do the less you will be able to do, and the harder it will be to get back into condition. And even if you get different drugs they can only do so much. We have to do as much as we can ourselves too.

[pauluk60 in reply to helixhelix]

helix lisen to paul i lost 8/10 twice other weights as well could 500 hundred trunk 100 squats pull ups were my down fall only 50 used go out running with my dog for hours sheepdog bought as pup to grown 3 times a day with him but i even tired out the old boy by then and carried him home but he was old and full of have guess arthritis is the answer the look on his face made me cry and when i went out without him heart breaking ALSO WENT FISHING on rivers up down banks walk miles from car with all my gear so i think i know about mobility HELIX EXERCISE food fplan was the name dont know who by but some mite down db2 so do you think i want to sit down and do NOTHING i think your being a bit presumptuous what i do i do lite chair exercise but i stiffen up loose balance go haywire NOWT to do with exercise you should learn that everybody as a break point maybe i am not strong as YOU and have given up BUT WHAT I GOT I WANT TO HANG ONTO

[pauluk60 in reply to helixhelix]

mr/mrs helix I DONT WANT ANY DRUGS if poss i would walk up yard and throw them all in bin but from what i have read if you dont get diagnoses you will get worse DMARDS I THINK IS WHAT I READ ONLINE MAYO CLINIC USA WHERE PRESIDENTS GO i believe you may know better THAT "DO SO MUCH" COULD BE A BIG THING TO ME

[helixhelix in reply to pauluk60]

Only if you have a disease that DMARDs have an effect on. Otherwise they will be useless for you.

It sounds as if you have an appointment with a rheumatologist in a few weeks. That should be a step forward to getting a diagnosis as they are the specialists in musculoskeletal diseases. There are hundreds of them, so best to leave it to the experts rather than diagnosing yourself.

[pauluk60 in reply to helixhelix]

well here we go again LEAVE TO EXPERTS well about about 3/4years ago went to with swollen leg came to a/e doing as told by d/nurses ANY time YOUR GETS SWOLLEN RED OR CUT go to a/e right away so i did and meet "YOUR EXPERT" who said why are YOU HERE doing as told said i from my girls edna and flo who were sick of my leg 2 years of compression bandeges they had enough of it ulcer AND LOTS OF A/BS to get nearly wanted new tum .That made no difference to him you should be at your doctors ok appointment two weeks or if you cry on phone 2 days so begrudgingly he did tests 6 hour wait for them came back slightly miffed ok keep you in tonight but if temps right in morning home after a night of horrors finally temp down first round in morning HE WAS AT BED off you go and c doctor SAT MORNING TOLD HIM MAKES NO DIFFERENCE YOUR discharged take your hook never a man so happy home 10 hours started to shake violently and talking silly things huge blisters on pools of water at leg wife crying which i didnt believe when told anyways after 14 days of i/v and a leg redder than a boiled lobster and full of sores it was off home to edna and flo hi not you again ha ha cant get rid of me so easy moral of story can you guess leave it with you to finish helix o i could tell you about other EXPERTS one medical one car one gas boiler EXPERTS IF FOLLOWED THEIR EXTREMELY GOOD ADVICE would spent thousands new car new boiler and i mite be dead cause when looked into hospital records suspected SEPSIS!!!!!!!!!!!!!! HAVE CHEW AT THAT LOT

[helixhelix in reply to pauluk60]

Can't be bothered. You ask for our opinions, but if we don't agree with you then you don't want them.

[pauluk60 in reply to helixhelix]

i reply to you if i don't agree i don't take the ball home as far as i know i have answered with respect i don't have to any reply as gospel if you to take ball home bye bye have nice night helix please