As some of you know I'm waiting to see the neurologist in 12 days. In an effort to work out what might be making me feel dizzy and out of sync sometimes, I've gone cold turkey on the last of my drugs, Amitriptyline, and am not even taking the odd Zopiclone sleeping pill now either.
I think I would be sleeping well but for the awful pain that wakes me up at around 5 am each morning. Also this pain stops me getting to sleep too so I'm not turning off the light until midnight as I watch tv or read in effort to distract myself until I drop off finally.
During the day, apart from being a zombie I'm pain ridden too. So I've written a list for the consultant - symptoms with bullet points in chronological order and then again in order of how severely they impact on my quality of life.
The thing I just can't judge for myself is whether any of this pain is joint pain or relates directly to the fact that I will have been off MTX for five months soon. Yesterday I had a whole day of feeling fluey and very stiff with intense neuralgia in my forefingers from the tips where I have some early OA, radiating all the way up into my shoulders and neck. Similar things are going on from my feet and ankles up into my knees. This is what I would describe as funny-bone pain and is pretty much constant now like widespread toothache.
I don't want the neurologist to simply pass everything back to my rheumatologist, assuming it is all uncontrolled RA because I'm off all meds.
Personally I'm not sure any of it is RA related because there's no visible swelling or fracture like pain in my joints as I've experienced RA in the past.
The pain is extreme burning now. The wet, numb ache has lessened a bit and all is fire and brimstone with tingling and toothache in my bones! Yesterday I was so tired that all I could do was slump in bed where I worked at making something for our new art project, watched crap tv and slept on and off when pain permitted. I walked the dogs but my ankles are terribly achy and the girl dog somehow lost her New York collar with new identity tag - probably down a rabbit hole! We did retrace our steps but it was like looking for a needle in haystack
I think it's better when I'm moving about/ walking but I had such a headache and was so achy in my ankles and shoulders that I couldn't wait to get back to bed.
My GP agreed by email that my approach in cutting Amitriptyline was sensible as I've been having these episodes of feeling I might fall and getting disorientated very easily. But I can't really tell if this has made any difference yet because I'm so tired and in so much pain constantly that it's hard to know what is what re dizziness.
And equally if I'm not in this much pain I know that I will give the neurologist the impression that I'm just fine really. I've been waiting for well over a year to get this nerve stuff addressed so I really don't want to blow it by having a one off good day! but I tend to blot out memories of pain or assume it's all in my head. I know this is probably a weird way to behave but without any tangible/ visible evidence to convince me or others I just assume it's all psychosomatic and think I sound crazy when I describe it to health professionals. I realise the neurologist will probably be very used to hearing stuff about wet legs and burning pins and needles in soles and palms and lightening bolts of pain but still....!
Not really asking advice here - just needed to offload some thoughts to divert myself from the firy hell in all my extremities and shoulders!
I hope the neurologist examines you thoroughly, does the testing that should be done and makes a considered and researched diagnosis. I know how you feel with the 'all in my head' feeling. No it's not it's all in your body. You know your body, you know something is wrong and you have lived with it and know what is normal and what is not. Have faith in your self and don't let anyone deter you from getting an answer. You have suffered for long enough without an answer, let's hope there are some answers
Thanks - I do know in theory but easily think myself a fraud these days. I think it's just because I'm a visual person and find it really hard to trust things I can't see but can only feel.
My GP reassured me that he holds this neurologist in high regard and thinks I should get a good assessment from him. I've no idea what this assessment will involve apart from nerve conduction tests.
I can't bear the idea of being told it's idiopathic but the realist in me knows this is very likely. At least when I was having my blood tests done regularly I could see my inflammation levels and these usually matched my pain and stiffness levels and fatigue pretty accurately. My GP won't take them anymore now I'm not on DMARDs but said that the neurologist would probably get a full blood count done. It's not the same though because I can't just get a print out and see it with my own eyes.
Well I hope the neurologist lives up to GP's expectations. I do not believe that you are a fraud I think you have had a very frustrating and painful time and it wears us down and makes us doubt ourselves. I so hope you get answers.
Hasn't made any difference yet but only 4 weeks on 10mg so far. start on 15 tonight. Had some nausea but nothing bad, still getting some weird ear things. Had headaches though that just don't go away.
Sorry about the headaches and ear stuff. I found that MTX side effects kept changing all the time - but it worked exceptionally well for my RA and hope it does for yours too. Thanks for believing my symptoms are real - everyone does really apart from me but only because they are so awful I can't bear to believe in them presently. My GP says that nerve damage is probably irreversable and the thought of this pain being for life is not worth contemplating - so I try not to!
That would be a terrible outcome. I so hope there is something they can do for you. Life is tough enough without all the added things. I seem to keep getting add ons, gotta say I am a bit sick of it too. hahahahah well you know me if a strange side effect can happen or the complete op posit if what the drug is supposed to do can happen it happens to me. I have one weirdo body really.
When I was on a Sjogren's forum I found an old thread from an american woman who had only developed Sjogren's Syndrome when she tried to cut out processed food and gluten etc. Whenever she tried to eat more healthily she became terribly ill with Sjogren's symptoms and had to go back onto junk food diet in order to get her health back on track?!! Doctors were baffled of course but her symptoms were so severe that they had to agree that she needs all the rubbish. This was a seriously weird idea but it did serve to make me feel much more normal in my drug intolerences and autoimmune symptoms at least!
Oh no, that is terrible having to eat junk food. Poor woman but I know how she feels with weirdness. Well at least we could never be classed as boring. My GP reckons he is going to write a book about me. He cannot believe the things that have happened in the past two and a half years. My latest trick was to trip over a computer cord in my bedroom and fracture my heel. All the drs keep asking me how I did it because apparently it is the sort of fracture only seen when you jump down from a great height or are in a car accident where the floor of the car crushes your foot. Go figure!!!
Oh heck - hope it's mending now though? I've never had any broken bones - just joints that pretend and massive amounts of silly stuff such as no tears, numb white toes with nerves that go ping, pins and needles and feeling as though I might fall over a computer cord in my bedroom or fall off a cliff at any moment but thankfully I never do!
My feet are not working as they should, think I have lifted my foot and haven't lifted it far enough. I think that is how it happened. I have a few more weeks in a moon boot and will have a ct scan to see if it has healed then hopefully I can wear two shoes again. I also tore a tendon in my rotator cuff and have a spur so need surgery on that along with a third cardiac ablation for SVT & Afib. I sound like a right pain!! hahahahah It's amazing that I fit full time work in to all this too!
Hahah no I crash and burn hard on the weekends. I have to work or I have no income to pay for rent and bills. Oh well that's life.
Good morning Twitchy It sounds very sensible to eliminate all the drugs as possible causes for the way you're feeling. I must add that I also dont get much visible joint swelling or redness. I can't relate to the squishy wet leg feeling at all. Like you I get the overall aching which feels more like bones,muscles and tendons. My skin can feel very sensitive with it like it's been burned. I also share your feeling of the burning tingling. When my husband asked what it was like I said " Think of all the times you've hurt yourself in your life. Fell down the stairs, crashed your bike, fallen over, dislocated your wrist, trapped your fingers in a door, got tennis elbow, lockjaw, stubbed your toes. Then add in a damn good beating. Well that's how I feel now. It's how I've felt every day for the past 9 months!" The difference is it doesn't bruise and it doesn't bleed so nobody really understands.
My GP is very conservative with the prescribing of sleeping pills etc but I know my Dad is on a right concoction. I don't think it does him any good whatsoever and leaves him drowsy and disorientated. When he went into hospital for his valve replacement earlier this year they took him off everything and he was a different man. Gradually each time he's been to the GP with back pain they've added in stronger and stronger drugs until now all he does is sleep and when not sleeping he talks about feeling ill and in pain. I think this is one reason I'm so scared of taking pain relief myself. I love my Dad but don't want to end up the same as him.
I think we all blot out the pain to an extent. I know I'm knocking off my anti inflammatories and paracetamol before seeing my rheumatologist next week. I'd convince myself I was ok if I didn't. Hopefully your notes will prompt you to get the most out of your consultation. I really do hope you can get some answers at last.
As for the lost dog collar! I expect one day when you're not expecting it the dog will snoop down a rabbit hole and run up to you carrying it proudly. X
Ha ha well there's thousands of rabbit holes for her to poke around in where we were walking so pigs might fly!! I don't think she fully appreciates that we went into a pet shop in New York and spent at least ten minutes deliberating on which collar to go for. This one was georgeous!
The thing about the burning and the tingling is that it arrived before or with my RA symptoms so I find it very hard to separate it out now - especially because I'm off all RA drugs too so if it's going to come back then this could be it brewing up now. My GP and rheumy seem to think that I will know if and when it comes back because of the pain and swelling but, apart from my hands and the odd hot red fizz at the end of a flare I really haven't had any visible swelling at all. I would know if the fracture pain came back of course but as there's numbness too I'm not 100% sure about this. I feel that the pain is from nerves being trapped by inflammation of connective tissue so it would really help to know whether my blood markers confirmed my instincts or not.
For example when I saw the connective tissue professor earlier this year my ESR was 62 and this did somehow make me feel more confident that the pain in my shoulder blade was real and inflammatory in nature and gave us both something to focus on re autoimmunity and RA.
I'm glad I'm not alone in my suspicion of sleeping pills and pain dullers. I understand completely about your dad - my mum took Diazipan often to help her sleep and I feel it may well have contributed to her sudden death from heart failure. My dad died same way at same age and took a big coctail of drugs round the clock for diabetes, hypertension, gout, arrhythmia. They were both big on pill popping and this has put me off too.
Good luck for next week! X
Toothache-like pain is something I experienced for some time before and after diagnosis. It was deep in the bones of my legs and my arms too, to a lesser extent. I've not had it since starting meds years ago. I also felt extremely unwell generally. Extreme stiffness too, and that did last a fair old while.
I always build up a head of steam before appointments, even those that are routine. So much depends on these rare events.
I try to centre myself as much as possible without losing that sense of urgency. What if you were taking a child to see the Neurologist? A child who had often described their symptoms to you, but was unlikely to reel them of to the doctor. You would doubtless be able to talk for them, to describe the symptoms clearly, sifting out any that had been too infrequent to count but emphasising those that were most consistent and most distressing. Sometimes I try to objectify myself by thinking like that.
I think if I were you I wouldn't try too hard to classify symptoms or to talk of them using medical terminology. And at the same time our own idiosyncratic way of expressing how we feel can muddy the water too, I think it's best to use metaphors and so on advisedly. Having said that, the feeling of wetness you've often described is so distinct that it might well ring bells with the neurologist.
Good luck!
Your are in the wars and no mistake, I hope you get it all sorted out for you. Just a thought in passing which I have mentioned to you before in the past, but your symptoms are similar to mine and you know I don't have RA. Let's hope the nuro team get it sorted for you. Take care and I hope you get some sleep soon. xxx
Thanks Postle2 and Georje. I'm back in bed with a mug of tea, a hot water bottle under my arm and feel like a weepy blob of ache. I know it's feeble of me but I made a last minute GP appointment because the thought of a whole weekend of not knowing whether this is RA or neurological and what to do about it was just too awful.
I got the normally rather cool young woman who works part time and this time I'm embarrassed to say that I just let it all hang out and if I'd had tears they would have gushed - poor lass not the ideal patient for a Friday afternoon! She was rather sweet, heavily pregnant, and said to me that she thought I was probably starting to flare up with RA and that this nerve stuff was all related as the body is all one mass of tissue so I should stop trying to compartmentalise the pain - let the rheumy and neuro do that between them - and just acknowledge that it's all part of the connective tissue system.
She advised me to remain off Amitriptyline since the dizziness has lifted for two days now, and to take Naproxen for the stiffness and ache. She said I should stay on it with Omaprazole for about five days minimum and if it works well then that might indicate that at least some of the pain is inflammatory by nature. If the nerve pain is still terrible at night then I should go back on Amitriptyline until I see the neurologist. She advised me to keep a diary of what symptoms I'm getting and what drugs I'm on. Haven't done that for years but it makes sense when so much going on. She thinks the right shoulder pain is trapped nerve caused by muscular or joint problem in the shoulder perhaps as I'm right handed and it throbs all the way down my arm into the tips of my fingers. She said I've got to try not to hunch up and try to keep moving but I do move all the time because of the burning neuropathy. Hateful stuff.
I got her to read the last letter my rheumy wrote and he describes my RA as "non-erosive". Does this mean mild I wonder or is it another way term for Palindromic does anyone know? Surely the main reason I had no erosions when he last saw me is because I've been on DMARDs or steroids since diagnosis? Very confusing really. And what about nerve damage or doesn't that count for anything? Oh well Tx
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I would say that the 'non-erosive' means that they have caught it in time and that the Dmards had been working and stopping your joints from corrosion, (maybe wrong word used here but you get my meaning). This is what they are working towards, well that's what my consultant informs me, otherwise he is not doing his job properly! So I am inclined to agree with Gp lady and that you are starting to have flares and this time its working around your body.
Why not have a good cry when your visiting them, that way at least they understand that your have reached the end of your tether and you are feeling absolutely lousy. I sometimes think this is the only time that they sit up and take any notice of you! You wrap yourself around your hot bottle and stop worrying about what is happening with your body just now and get some sleep. Put some floaty music on to relax you and empty your mind of everything, and just nod off. Take care and sleep tight. xx
Thanks Georje I am doing as you suggest minus the music because youngest is having friends over tonight and I'm holed up with hubby in our bedroom and he's watching the news. I have just looked up non-erosive RA and it seems pretty rare only affecting 2% of people with RA. Palindromic flags up too.
The BMJ piece I read said that if it is RA it could only be described as non erosive once a patient has had it for five years with no erosions showing up. I was only diagnosed 3 years ago this month and so I think he's being a bit previous to be honest! It also says that if someone is taken off DMARDs with RA then they should be very closely monitored. My GP won't take my bloods and I've been bi-passed by my rheumy this time so I don't think much of any of this to be honest.
I hate being emotional with GPs because I always think they will decide all my problems are psychosomatic. I think this comes from years of my late mum being very dismissive of our health problems and telling me my severe eczema and alopecia were all just symptoms of neurosis. She was parented really badly so I don't hold it against her as she was wonderful in lots of ways but it means I'm really paranoid about what my doctors might think of me! X
Hope you managed some sleep last night T. I'm so surprised they won't still give you blood tests as surely this is the way to keep an eye on inflammation, and the fact that she has prescribed Naproxen again surely she must think there's inflammation!. Doesn't make sense to me. If you are in so much pain and discomfort from all of your problems then it seems somewhat insensitive for her to dismiss so much and kind of leave you to get on with it!
Really hope this is resolved soon, as you have put up with so much.
Sending some hugs from down south
Carolyn xx
Thanks so much Carolyn. I woke with the dreadful burning pain in peripheries at about 4am and went and ran a cool bath and sat on the side with feet, ankles and hands all soaking in it for about 20 minutes. This does work but just like actual burns it comes back after a while so I woke again at 6am and repeated it and had a rant on my iPhone notepad.
Basically I'm angry with my body and with my medical team in equal measure. I won't go into the rheumy politics on here but have decided that I'm not going to pacify the pain with drugs. No naproxen for me this time.
This pregnant Doctor was fine and just trying to give me some respite for the weekend, she couldn't take my blood as it was Friday afternoon or she would have done she said. But my own GP is another matter. The refusal to check my ESR or CRP makes me really mad. He is the senior partner so they all defer to him and sometimes he's excellent but I feel he and my rheumy and the physio are all playing some kind of weird power game with me. I don't think they can cope with a patient who educates herself.
I went on a self management course for people with long term conditions last year and I know that getting my blood checked regularly is my way of managing this disease because I find drugs so hard to tolerate that I need convincing before I will take anything at all now. So denying me the regular blood checks is really mean - and he knows that if he doesn't take them now the big hospital will have to when I'm at the neurology appointment so he saves the practice money - as my vitamin D and B12 will be checked too probably. But all will take longer to work out this way and I wont have access to the results to print off for my records this time.
So I'm resolved to starve this pain out by not taking any pain dullers or NSAIDS. If they want to see me in pain to know my RA has come back or not and if they need visible swelling then i'm going to see if I can give it to them! If it doesn't show itself then I may just have to stick a load of eye drops in and sit in one of the GP's offices and bawl!
Sorry for the rant - you are all lovely to put up with my endless moanings!
Joys T!!! I personally am putting a lot of hope into this neuro appointment as I suggested you needed it a couple of years ago!!
Get your plan of action sorted, take your diary, photos and as many Rheumy letters that you think will be beneficial. Is your hubby going with you, I still find I get more sense outbid the doctors when mine or a friend is with me.
Are you curled up like me today watching rugby??? Great children in need night. I too didn't get to sleep till 5 am with the pain even after taking no phone, oooh the joys! X
I think we corresponded well into the early hours re children in need etc Allanah - or sent messages via empathy into the ether perhaps?! I'm actually forcing myself to do some nintendo wii excercises for the first time in a week, against all my body's emploring ways! I have opted out of the dog walking though because it's just too cold and dreech for me out there and at least Wii is in the comfort of my living room on the carpet with a giant tumbler of water to sip and and you lovely people to distract me when I can't bear another moment of stretches. Then it will be another cool soaking for the feet, ankles and hands I think. Then we will think about tea - fish - got no appetite so not looking forward to cooking this but hubby is on a nightshift so it's got to be done as he needs a post dog walk nap.
Yes I know the neuro was suggested a long time ago but my GP didn't have you lot sitting behind me booing and hissing as he declined, saying that it would take forever to get an appointment and by that time the MTX would have left my body and I'd probably fine - or it would just all be called "idiopathic" - as he still thinks it is.
No hubby can't come with me - I get a patient flight and after New York we are totally skint - I had to scrape the barrel just to pay the tenner we islanders pay for the flight admin! Anyway he's not very good as back up I've found. He loathed my rheumy the one time he met him and that may show some discernment but it also wound me up a treat!
He would like me to go down the naturopathic route and is kind of in denial about RA and neuro stuff and gets distraught at the impact many of the drugs have had on me - from vomiting to falling off toilet with cramps and dizziness to mania to hideous rashes and scooping me up off a beach in the rain on a Sunday morning looking like a drunk - can't honestly say I blame him!
I don't suppose much will emerge on the day anhow but I've got an early a.m flight down and an evening flight home just in case they decide to give me an MRI. Imaging - visuals for Twitchy?? Whoever heard of such a thing?! Mind you I won't even get into lifts without doing meditation so I just don't know how I would bear an MRI? I think this might be one reason I'm feeling so anxious - the thought of no news and no answers is only a tiny bit more dreadful to me than the thought of having an MRI or bad news! X
PS I've spent the morning writing bullet points as Cathie once advised and will have my trusty folder with images and old blood results. Hubby actually thinks I should go for a clean start and not show him the folder or my previous blood results but I think I'll take it with me anyway. Heck it's not for a week and a half - I'm being kind of previous!
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It sounds very sensible to eliminate all the drugs as possible causes for the way you're feeling. I must add that I also dont get much visible joint swelling or redness. I can't relate to the squishy wet leg feeling at all. Like you I get the overall aching which feels more like bones,muscles and tendons. My skin can feel very sensitive with it like it's been burned. I also share your feeling of the burning tingling. When my husband asked what it was like I said " Think of all the times you've hurt yourself in your life. Fell down the stairs, crashed your bike, fallen over, dislocated your wrist, trapped your fingers in a door, got tennis elbow, lockjaw, stubbed your toes. Then add in a damn good beating. Well that's how I feel now. It's how I've felt every day for the past 9 months!" The difference is it doesn't bruise and it doesn't bleed so nobody really understands. 
being diagnosed 
My teacup is heavy :(
Well finally got my diagnosis on fri 
Shoulder pains
Steroids 
