Hi everyone, need some help please.... New to all this, awaiting first rheumy appt, not yet diagnosed with anything. Spent 4 days with inflamed hands, arms and shoulders, then spent 8 days with inflamed knees, feet, cramps in calves, thighs and terrible weakness. Taking ibuprofen. Then next day legs felt stronger and less painful. In an attempt to "get back to normal" following gp saying I had a viral inflammation and making me feel silly about making a fuss, I did some things. I decided I didn't need to be on any tablets now the pain wasnt so bad, so stopped ibuprofen, later I got shoulder and neck pain, I tried to hoover but only managed hall and stairs before exhausted, I tried to drive only about 2 miles to nearest shops and it was painful on my legs, and I had two wine spritzers in the evening.
The next day couldn't walk on left leg, so incredibly painful again and had to go through all the cramping and weakness again for the last 4 days. Today my leg feels a bit stronger and I don't want to go backwards again.
What do you think I did wrong? Was it driving too early, especially with the clutch pedal? or did I do too much? it was hardly anything . I am now on ibuprofen and paracetamol. I feel in limbo land without any medical support esp over such a long weekend.
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wineandlattes
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Like you I always try to find something I have done to blame for every symptom. The reality is that all types of inflammatory arthritis arrive regardless of how you live your life day to day. This is because almost all 200 tyoes of inflammatory arthritis are triggered by a faulty immune response. So whether or not yours is temporary (post viral/ reactive) or a long term autoimmune disease such as RA - these all have their own momentum and activity of most types may well leave you very fatigued and in pain.
Hopefully, once you have seen the rheumatology consultant you will have a diagnosis - although some types of rheumatic disease are very tricky to pin down so don't expect too much - you will get onto a treatment which inproves your life immeasurably. Very few of us ever struggle as badly as we did when polyarthritis/ RA first started.
So hang in there, read up, rest up, keep moving when you can, photograph any swollen joints and print these off to show the rheumy in case you have little swelling on the day. If you can bear to read as much about RA as you can on the NRAS site rather than torturing yourself by googling RA and seeing pictures of mangled looking hands. These are mostly images of how RA affected older people before the drugs were invented and after many years.
If you feel bad or find your joints suffer after driving then rest them. If you have been advised to take Ibuprofen regularly then I really recommend you do this but ask for a stomach protector to take with it and try to come off a few days before your first rheumatology appointment or blood tests so you get a more accurate idea of how things are.
Thank you twitchytoes, I will stay on the medicines until close to my appointment. I should find out tomorrow when it is. I had to go private in the end, as gp s seemed to be reluctant to refer me as anti ccp test was clear. I just feel that they are not understanding how awful I have felt. My husband asked me to stop going on this site as I haven't been diagnosed, but this community are the only people that I have at the moment that understand what I'm going through and the knowledge I have gleaned about just being familiar with the names of different meds is such good preparation for me just in case. I think knowledge is power. X
I agree about knowledge being power. In common with 40% of RA sufferers my anti-CCP was negative too. I am lucky that so far my RA has not eroded any joints - but it is playing havoc with other parts of me and I'm terribly drug intolerant so it's a case of swings and roundabouts I suppose. If the private rheumy does diagnose you with a type of inflammatory arthritis then you will hopefully be able to get back into the NHS with this diagnosis anyway.
My husband was just the same about me comimg here undiagnosed but no regrets!
• in reply to
Mine says the same - he thinks that reading about symptoms brings mine on.. but nope. No one mentions what's bugging me these days. haha.. I adore everyone on this site. I am so glad to have them. Otherwise I am a lonely island with RA..
Hi Karen, no one has given this a name, one gp said "viral inflammation", another said it might be reactive arthritis. Felt really awful this morning and yesterday morning, seems to be after taking first dose of ibuprofen, get a tight heavy feeling on chest and feel really really weak all over. Was scared I was going to have a heart attack! Probably more likely a panic attack. I've asked gp to phone me before I take any more. Trouble is I can feel everything stiffening up already...x
I went through life with an inflammatory arthritis for a long time now. Being that there are so many kinds of arthritis,..the hardest part is deciding if it is truly inflammatory or if it is Autoimmune..
with the difference being ....well, nothing.. as far as treatment goes..it's the same or at least it's been for me while doctors go back and forth about the kind mine really is.. Does that sound familiar?
What I would tell someone being that I have been treated for both with the same exact drugs is relax and don't stress over the name of it.. .
You may be suffering from Panic attacks which I do get rather frequently especially around treatment time.. You and I might want to take that discussion in private messaging..
The only thing that I dislike about private messaging is that I don't always check my messages and If I get off track or I mess up my facts on panic disorder then no one is there to correct me or suggest other.. I can help you hopefully without adding to your stress...or without putting ideas into your mind to cause more panic.. so let me just ask the forum for permission to use some space to talk openly with you..
Forum: May I use some space on this forum to talk to wineandlattes about panic? I do realize that there is an Anxiety Forum however it ties in with arthritis.. X Karen
Karen, I don't see anything wrong with talking about panic, especially as it relates here. I'm sure you're not the only one with the issue, because it's something I struggle with, too. xx
You didn't do anything wrong! But if you do have an inflammatory disease my experience is that they can hit you like a train. I went from normal to awful within days, and it really shocked me as I'd been perfectly fit & healthy before. And absolutely shattered - which is a result of the inflammation that also took me by surprise. I could hardly stay awake.
I hope you can get a GP appointment soon to chase up rheumy appointment and to ask about better pain control /steroids or stronger anti inflammatories in short term. In the meantime I think you'd be best to rest - eat well and sleep well and do very gentle things. My doc told me that it was best to stay on max dose of anti-inflammatories (Ibuprofen) and stick to the 4 hour schedule as that helps keep it under the best control. But try not to stay in bed and do nothing as that doesn't help in the long run either.
Hit by a train..... That's exactly how I tried to describe it to my husbsnd. And feeling robbed of the life that I had 4 weeks ago. Feels more like 4 months. The fatigue has been like nothing I have ever experienced before, I just can't really do anything. Even just putting a load of washing in the machine is exhausting. The timing has been rubbish, feel really sorry for my boys as its Easter holidays and I can't do anything other than lay on the sofa and watch a movie with them. Mind you they are 15 and 11 now so probably would rather be in their rooms on computers and Xbox etc anyway! Feel like all I keep doing is contacting GPs, never seem to get the same one so no consistency. Had more contact with them in the last two weeks than I've had in the last 5 years! I think I ll wait for rheumy appt, hopefully will be soon.
Have you got your fitness levels back? I'm worried that life is always going to be like it is now. Even when I feel better, I think I'm going to be nervous about ever doing anything physical again in case this happens again.
I'm fine now, about 95% normal and apart from the RA I'm fitter than I've ever been. I walk miles every day with dog, do pilates, garden and so on. What I don't do is drink, get stressed, stay up too late or eat junk food. The bad news is that it took me over a year to get the right combination of drugs to get this under control. But I found the right mix in the end.
So pleased to hear that, its really inspirational and gives me hope whatever the outcome. I love gardening and diy, we're in the middle of renovating our very old, neglected house and garden and I do most of the work as hubby works long hours in London. We did have people in to do the kitchen, electrics and heating so at least that bits lovely and its warm, but the rest is pretty awful. Not very comfortable or nice when you feel poorly...x
Try doing things in smaller chunks of time. I've had to use an actual timer to make myself stop and rest. You described a LOT of activity, perhaps break it up a little more and cut yourself some slack! Regardless of diagnosis, being swollen and in pain is exhausting. xx
Really do try not to convince yourself of the worst - after all you could just have reactive arthritis that goes away again, or something completely different. But give yourself a break for now and write lists of all the things you will do sometime soon. We've recently finished renovating a wood turner's workshop which involved me spending days perched on ladders battling with various tools, or squashed in awkward positions. You just learnt to pace things a bit more then you used to, but we had several tradespeople working alongside us and they were very happy to have regular tea breaks.
The help that the others gave you is pretty much what I would have told you. One thing that will zap your energy is worrying about how you feel and what takes much more effort.. as they told you, tiredness, weakness and feeling much of what you are describing sounds very much like Inflammatory Arthritis..
Take in some deep breaths ==- it's time for you to just take care of you..
Hi Karen, thanks so much for your support. I've just had my first telephone assessment with my medical case manager. She's going to arrange my appt with rheumatologist, really to put my mind at rest, although she said that she thinks it may actually be a neurologist that I need to see based on anxiety and panic attacks over the last year. I had no idea that neurology illnesses could bring on real pain and joint inflammation. She said that if you dont listen to fatigue and general aches and pain, then your brain will send real pain to make you stop in your tracks and have no choice but to rest. Kind of makes sense. She was lovely and I can call her anytime. At the moment I feel reassured, weepy and emotional but calmer. This has just hit me like a bolt out of the blue. I know I probably come across as really "needy" at the moment, but I'm normally a strong, independent, capable person who copes well with things.... Need to check my Kids are OK now, hubby in London so no help today, feel like an awful mum, told them they'd have to get themselves a bowl of cereal for lunch! Thank goodness they're older and not toddlers. X
Everyone needs at some point. It's okay that you do! And seriously, cereal for lunch will not cause the kids to wither up and blow away. Panic and anxiety in themselves can sap energy reserves like nobody's business, let alone the possibility of anything else. Feel free to message or post, whatever works for you. xx
-Bat
I was very physically active before my femur tip and knee
was in the way of someone's very powerful kick in the game
of American Football or soccer, as we call it. In an instant it
seemed that I was the picture of health and then one day gone
and it was replaced with pain injections, IV's and pills.. I had
serious complications that would return again and again in the
following many months. Finally the pain pills went because I was
sitting up in my hospital bed in sheer terror that I couldn't breath
and I couldn't get my air, I was having a heart attack and I threw
the paper bag on the ground when the nurses handed it to me.
I was begging for oxygen.. okay, that time my doctor walked in and
I did have collapsed lung.. had septic infection due to knee being
severely infected. The infection was being treated, I was behaving like
this for no more than 5 - 9 minutes before they knew what happened.
I learned to panic - for reason. The feeling never left me.. not 2.5
years later. The event lead to me not being able to breath, not being
able to leave the house so I quit going out anywhere at all except
to the doctor to find out that it was just panic. I was ballistic over
the symptoms I started working from home rather than corporate.
I would panic for no reason feeling cold sweats the coldness went
down my spine and stayed. My body felt like it was separated from
my head, my mind, I felt like I would black out often and severely. I
would run to my bed, lay down and begin praying it away. I had
just started Restless leg pills, I had pain pills but few, I had no
other pills.. This panic caused me to finally tell my friend, my mom,
my sister who didn't understand it and said that I better get some
more sleep and get back out with friends but I wouldn't leave the
house and if I did I took pain pills just to calm the fears. They didn't
work but they caused me to not be like myself which really upset
Todd who said take those only for really bad pain above a level 8.
I totally quit leaving even to be at someone elses house. I gave up
on having an escape route and I was too disconnected to my body
felt dizzy and didn't want the embarrassment.
The doctor sent me to psychologists and I didn't have the correct
names and terms, descriptions of what I was feeling, going through.
I went to one, another who wasn't understanding what set it off. I
learned how to picture a big red stop sign and that worked for
some time as long as I didn't go out.
I taught myself how to feel the little signs of panic and felt my body
start tensing up and "That" was my chance to get up and run to
the car if I was out.. I always knew where the door was.. Most of the
time I was panting in fear and visited the emergency room about
24 times each month telling them that I felt yucky, cold sweats, racing
heart, pains in my chest, I couldn't breathe, I couldn't even talk , I felt
like my head was off of my body or in the clouds is all that I had to
say while in despair - I breathed in paper bags, I paced, fidgeted
hard, I couldn't blink, my eyes were red with tears that dried up over
this and I pursed my lips together to not tell them that I needed a
pill or more panic pills - fast acting panic pills ( valium) or forget
them, I was hiding under a rock never even talking to anyone but
Todd and my kids, my mother..
My youngest daughter was 14 and she took on my same exact symptoms
she had someone at school ( a councilor) who knew the symptoms of
panic attack - this was after 9 months of silent panic for her) She helped
her get into the doctor with my help and was soon on Paxil.. I
couldn't believe how it changed her life. She became herself so fast -
about 6-7 weeks is what she needed.. I started paxil on a smaller dose
than she was on and it took me a good 16 weeks to get going to have
her kind of changes start in me.. I met a friend in panic support group
and I met another person that surprised me. My niece was there.
Wala...it runs in families but my behaviors were mimicked by Emily until
they became real to her.. after 4 years, she's off the Paxil completely.
I can't get off of it - I relapse very quickly..
Paxil was a life changer, being with the right psychology is helping me
I am finding out what set it off but more importantly the pain psychologist
is working with my doctors to help me to get exactly what I need to
keep my body from going into that mode again.. I am losing some ability
and I am a little bit falling apart because of it but its under control now.
I am in a physical therapy program that will work only the muscles
that my doctor needs me to work, nothing more, nothing less...and
part of that is pain attitudes - I simply cannot fail this at all.. not as
long as I am in the class and not at home. I will bring my body and the
mind will follow the newly learned attitude. I catch myself using the
concept.
I have a new project to keep the mind busy and to stay distracted which
is the best tool in the toolbox... You will go through a lot of things before
this one makes sense though -- for me, it's either do it (get distracted)
or take pills (I mean light narcotics or heavy ones if panic is too strong)
or suffer those panic attacks.. Its the best feeling in the world to be
focused and to have meaningful kind of stuff to do.. work can even be
great if your mind drifts over to brainstorming about that project...or
newfound skill that you will learn.. Try, try and try the opportunities
that are offered to you at very low cost or mostly free to keep your
life interesting when that part of your pain program comes.. learn the
guitar, or a new sport or learn a new skill... You can not be stuck in
the rut of going to work and home to work there everyday. You have to
keep the fun in your life. You will learn to do it again even as a couple
or you and one of your kids one on one (adult child, that is) You will
feel like you matter again... and you will deal with that panic business
from every angle until you get it under control You will also learn pain
control and relaxation techniques at the same time...but you need to
take the time, meet the commitment.
Wow, did this get long - my point that it doesn't happen overnight and
you will not have to suffer another day if you go into the office of your
gP and say that panic attacks are wrecking your life and so is this pain.
Tell him that you cannot work with this going on and you can't even
function without fear that it will strike again...tell him everyway that
it affects your life from not being able to drive, make commitments,
be in charge of things and if you don't want to leave home, tell him that.
Please do it for yourself.. be honest ... but don't leave any part of it out.
XX Karen
Ps if you want to talk with me, private message me. I can help you with
some things but not all.. or we can talk openly on here so people can
jump in if they truly know what panic attacks feel like. they are a lot
more than fear and simple anxiety.. you cannot be talked out of one..
praying helps but it doesn't help when it's so severe that you are laying
down on the floor or begging for oxygen...Luv you girls and guys, Karen
Gosh, karen, that was so emotional.... I am so sorry for what you've had to go through and to see your daughter go through the same thing must have been heart wrenching. I am so pleased for you that you are both now on the road to recovery from these attacks and getting the help you need. Thank you for going public with your post, I think it can really help people realise that panic attacks can be a serious illness, but that help is out there. People just continually amaze me on here with their strength and courage. I think that I can recognise these feelings of panic before it gets as severe and learn to control it. I know that yesterday was not a heart problem and was panic, and I was already feeling panicky as husband had to go to work and I was on my own with kids. But today I know that actually I did cope yesterday, it was traumatic but I made it through the day without dying or collapsing and the children got fed. So today I am determined to keep calm, I'm not taking any ibuprofen as I convinced myself yesterday that that was what was causing tight chest, so I don't have to worry about that, and just going to keep calm. I know its crazy to think that ibuprofen can give me a heart attack, but I just want to run with it at the moment, because it makes me feel calmer just to stick to paracetamol for now.
Have got my lovely step mum coming round today bringing homemade soup , and she always knows how to make me feel good and understands me. And i can walk a bit better today so everything is much more positive. I've got my rheumy appt on Tues. Will he actually be able to tell me there and then if anything is wrong with my joints, and what caused the inflammation? X
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I did it 
Any advice on what to do.
What would you do?
Back again or not back again.
I just don't know what to do
