I am just joining this blog and is not something I would normally do so here goes!
I have recently been going through tests at the early arthritis clinic and have been diagnosed so far with Palindromic Rheumatism. All symptoms and test results point to RA but as it is early days the doctor will not commit. I have been advised that they are pretty sure it will evolve into RA and i am currently taking Arcoxia, Hydroxchloriqide and recently had a steriod injection.
I thought this would have stopped the flare ups but they are still happening. Is this normal.
Most of the pain is in my feet and hands including fingers and wrists. Knees also affected but not as bad as hands and feet.
One of the worst things is the fatigue, as i currently work full time about 50 hours per week, the tiredness is quite bad on some days.
Weekends are difficult but not sure why i feel so bad, i am not sure if it is due to doing the normal chores, cleaning, ironing, shopping, cooking etc.
Sorry to go on a bit but I have only been suffering since February and feel like i have not been myself for long time. Can't believe how much it has slowed me down and i am struggling to accept the changes.
A question for the bloggers who have had this for some time, is this how it is from now on as even though i am on all meds, I have not had a pain free week yet. My biggest worry is struggling to work and drive, as when the swelling appears in my hands it is very difficult to drive and do the normal stuff like unscrewing tops, lifting pans getting dressed etc. Am I being a hypochondriac or is it as painful as I think it is..
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BossyB
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Hi, you are most definitely not a hypochondriac!!! You are working an awful lot of hours and trying to lead a busy homelife, with RA or anything auto immune, thats just about impossible.
I was diagnosed over two years ago and still not under control. As for a pain free week, unfortunately that has only happened when I've been on prednisolone, the I feel wonderful.
I'm sure there will be others here who can tell you much more than I can, but I think you are going to have to work fewer hours, the fatigue alone is enough to make me sleep for twelve hours straight. I work as a childminder, I look after two brothers aged two and one from 7.30 - 4.30 three days a week, thats more than enough for me!!!
My original pain was from ankles and feet, now my hips are so painful I cant sleep, and hands elbows knees all join in.
Please start to think of your body and what this awful disease does to us, ;put yourself first. A job isnt worth making yourself even more ill over x
Hi - I'm pretty much in same boat as you with suspect early RA not yet on medication apart from Amitriptyline and Co-codimol so am no expert at all and sure other more experienced people will come in here as you request. For what it's worth I agree with Georgia - don't know how on earth you are managing 50 hours per week. I'm self-employed and used to work 40 hours or more per week until all this kicked off around March and am now so tired I could sleep for China and am lucky to get a few hours in a day as my concentration seems to have evaporated. Currently just surfaced after an afternoon collapse but for once the entire brood are in same boat as school's went back here today and we are all in shock!
I've just applied for a short term job that involves a 35 hour week over the winter and even wondering what I will do if I'm selected?
Seriously I think you are going to have to rethink your life as it is all about learning to pace things I believe. This thing turns your life upside down and work life has to adapt accordingly or there won't be much of a life to be had at all.
Hello Debbie and welcome to HU.
The way in which your feeling at the moment is perfectly normal, not knowing which way to turn and feeling like the pain will never end. Your emotions are probably all over the place too but what I will say is that your not alone and you won't always feel this way.
Your symptoms all point to RA, and this will mean some very significant life changes for you. Firstly learning to accept you have an illness and having to adjust your life in a way that you will cope better, this will all come in time, at the moment you need to look after yourself it's impossible at the moment to carry on doing everything as you did before. Once you can get onto some proper treatment to control the disease you will begin to feel better.
There are many medications, you don't say what your taking at the moment but if this regime of drugs isn't working for you then there will be something else so don't get disheartened.
Doing all the "normal" stuff like driving and unscrewing tops etc are very difficult when your hands are swollen and in a flare but you will get round this. I can't go into everything at once it would be impossible for you to take in.
Take it one step at a time ask any questions you need to and we will all do our very best to help, we all have our own ways of coping with RA.
The NRAS website is also a very good starting point for you as they also have an helpline for you to call, and many leaflets for you to read about the illness.
For the time being, look after yourself, and don't fight the illness either it only fights back harder!!
Pacing is a word you will hear a lot of on here and is something you will learn over time, so for now take care and one step at a time.
I can totally sympathise with you three years ago I was diagnosed with Palindromic RA, this did develop quite quickly into bog standard RA, my Consultant explained it 'as the RA trying to catch hold' jumping around my body like crazy, it was nearly a joke which joint would be next, it did settle down eventually. I was started on plaquinil, then Methotrexate then Humira injections twice a month (on all 3 now). My Consultant assured me on my first visit (I was in an awful state) that she would get my bloods to a normal level, and that I was not going to be disabled by this disease, she did say treatable, not curable. I did'nt believe it at the time, she never said how long it would take!
Today, my bloods are normal, I still have RA and some damage to wrists and ankle and still suffer tiredness, but I have learned to pace myself better, and to be calm and avoid stress. My main message to you here is yes, it will get better, when you get on the right combination of DMARDS, maybe anti tnf, and in the meantime, hopefully you will get anti inflammatories, and maybe a period of time on steroids. You can look back thru my blogs and maybe the fact I had palindromic to start with, might reassure you, of course you are welcome to private message me if you have a particular question. This is a very difficult time, and my heart goes out to you. There is a chance it will burn out, sadly that is unlikely
Be assertive with your GP & Rheumatoid Consultant, change docs if not happy, get second opinions, and try not to read the scary stuff on drug leaflets. I have had a good few steroid joint injections and they really help, but in my opinion, steroids, should only be a bridging treatment while they find the correct combination of meds for you. An andepressant is sometimes helpful for pain as well as the whole experience. My Spec does not like amitriptiline, she favours the more modern Cymbalta.
I work week on week off, I could'nt manage a 50 hour week anyway, I also changed to a small automatic car, from a Golf Plus diesel, and that made a huge difference, as do electric staplers, and various small adjustments to your work environment.
All of the above is in my experience ,and everybody is different as is their tolerance of meds that work.
Best Wishes, Gina.
Welcome also.. my name is alison..
I am amazed that you can do those hours.. though before I was diagnosed I did similar hours working in an independent community pharmacy, and topping up with supermarket pharmacy work til 8pm and at weekends.. not sure if over doing it caused my illness its hard to say.
.I would advise not to over do things ,if possible maybe book some annual leave?.. or if you are poorly take some sick leave and rest?.. Im going to settle on about 24-28 hours and thats more than enough.. I have to do professional study too!( thats in ones one time!).
The hydroxychloroquine(dmard) can take several(up to 3 months!) to work.
The steroid injection should give benefit within a 7 day time frame.. but you do need to try and rest to give it chance to work!
Very best wishes
Alison x
Hello Debbie
i sympathise with you. You are very very busy and your everyday life must be so difficult. I can only echo what the others have said - when you get properly diagnosed and proper treatment it should stabalise a bit - they tell you the first year is the hardest. I am still in the first year of diagnosis and on and off meds due to side effects so i am hoping when that is sorted out i will feel better again.
I agree the lethargy is dreadful, i remember about 2 years ago when this probably started, i used to be so frustrated with myself that after an hours tidying at the weekend i needed a break and then i couldn't get myself motivated again. I blamed everything, stress at work, late nights, early mornings, laziness, pmt.... and then the random pains started and the hands and fingers, shoulders, knees everything....and it was eventually a relief to be diagnosed. Can you cut down anymore, is your job very physical? Can you do your work from home? hope you find some relief soon
Hello Debbie
I can only repeat what others have said. For my part I can say that things do get better. Hopefully the meds you are on will take a while to take effect. Goodness how you manage to work 50 hours a week. I was working 7 days a week, but the only way I got on top of RA pull back. The fatigue put me to sleep whenever I tried to carry on. Now the big thing is pacing. It's something you have to learn to do. I couldnt believe how much it slowed me down too, and it is so frustrating, but I am learning to live with it.
Another thing, about the consultants and nurses, always tell them EXACTLY how it is.
Keep posting and logging on here, there is plenty of help and advice.
Take care
Julie xx
in reply to
It's me again. The Nutter! I didn;t mean to say I hoped the meds would take a long time to take effect!!! Arghh
I was a bit woozy when I wrote that. I mean that hopefully the you were on the right meds but that they do take a time to take effect!!!
I went straight to bed after writing that earlier, now I am wide awake at 5.30. Such in the life with RA. nothing is straight forward!
Take care
Julie xx
Hi Debbie, welcome, sorry your here but glad you found us: 50 hours is like 1 did to start however I ended up with more time of ill, in a Flare etc because of these hours and trying to push myself. I now work what hours 1 can, my employers have been very good and some days I can manage 6 hours (every rare) but normally it's 2-4 hours a days I still have to miss some days due to not being able to get up and dressed. but I try my best without pushing myself. Like the others say you need to learn too pace yourself its the most important part of learning to cope with this evil illness. The people of this site will be able to provide you invaluble help and support however also the NRAS helpline can help out loads too. Like Julie say's tell your doctors and nurses everything no matter how small it seems to you. It all helps in getting you the treatment you need. Try keeping a diary of how you Feel, what you've done etc, helps you figure out if overdoing it etc caused a flare or any other changes in your illness. You will get there, I'm still trying but done give op hope of getting more control over your RA remember you have RA, RA dosent have you !
I think I am probably at the same stage as you. I have also been suffering from terrible pains in my feet and hands. My blood test said it could be RA and I have an appointment with the specialist in September to confirm one way or the other.
I don't have a very understanding boss - there is only him and me running the business - when I tried to talk to him about the possibility that it might be RA his comment was 'Oh everyone gets that!!!'
I have reduced my working week down to 4 days - just because I wanted to spend more time with my family and I had also found that trying to work full time and run a home meant spending my weekends playing catch-up with all the chores.
I have found this site so helpful reading everyone's blogs and the advice given.
This is obviously the start of an interesting journey for both of us!! x
Hi Debbie, nice to meet you - but sorry it's because of health reasons.
I was diagnosed with RA 1992/93, I think that back then diagnosis was more 'you have it or you don't' and the medications and RA are now better understood than they were then. It is often treated far more aggressively than it was when I was diagnosed.
I am retired now but like you I worked 50 hours a week and managed those hours for 18 plus years. The key is getting the right meds. We are all different and respond to different medications. It's a shame that they can't yet do a blood test to see which medications suits each individual person. That would make life far easier for all of us. Talk to your GP or rheumy. team. It does take time for the medications to get into your system but they may be able to prescribe something more potent to help with the pain and swelling for now.
Regarding the swelling/pain in your hands and wrists - when I was working I often held my hands/wrists under a running cold tap which I found helped me. (As I could lock the door into the ladies loo I also managed to stick my foot/ankle under the cold tap as well and then plod back to my desk with no shoes on).
Weekends like you I felt absolutely washed out. I often felt as though I was going down with flu, aching all over and needing sleep. I could never work out if it was because it was the weekend and my body was saying 'ahhhh.....' in relief or if it was because of the food shopping/house cleaning/washing and ironing and etc. which happens at the weekends when working full time and catering for a family. I had a nap Saturday and Sunday afternoons when I had reached the limit of what I could manage which definitely helped me.
Please don't assume that it is a foregone conclusion that you will always be in pain or that you will have to give up working, A lot is down to you and your rheumy team / GP all working together. They can't help you if they don't know the problems you are having. They are there to help you and will want to keep you as mobile as possible for as long as possible so badger them if necessary.
Sorry, I've gone on a bit, you are definitely not a hypocondriac.
Thankyou so much for all your blogs since I joined yesterday. I don't feel so mad now that what I am going through. I have to say my job is not very physical and I am sitting down most of the day. My boss is very good tho and and has told me to reduce my hours and also that if I am having bad day to come in when I am ready and just text her. I am having access to work coming into to look at what i need for my desk as I am on a laptop for most of the day which is causing pain In my hands and wrists. My working hours are 37.5 but when you are a manager you just tend to stay to finish off for the day or sort any issues out in the office.
I have took it very easy for the past 2 days and my husband is being really good at the moment doing everything. Guess what, woke up at 3.15 this morning and right hand swollen and stiff. Very painful so I have no ideas how to prevent these flare ups as everything I try doesn't work. Meds have improved slightly but I know there are not the right ones yet and my Rhuemy said I may need to go on Methotroxate when I go back at the beginning of October. I am also shattered again which seems to be the case when I am in pain. Does anyone know what causes fatigue, I can tell some of you know lots more than me so any info would be grateful.
I am going on holiday next week to Spain with some friends and does anyone know If I will be affected when I am there or is there anything I need to do to avoid pain. I did invest in a pair of Fitflops which have been great for my feet as can't get many of my shoes on so they are coming with me. I would recommend them for sore feet.
I also do not have insurance but booking it at the weekend, shall I mention my illness or not.
Hi Deb, yes you need to mention your illness to make sure you are covered, you don't want to be stuck in Spain ill with RA and no insurance cover.
I recently took out my insurance cover to go to Majorca and found Virgin travel insurance good I spoke to them over the phone and arranged everything.
You would normally have to do this anyway with pre-existing medical conditions.
Remember not to drink the water and be sensible with what you are eating too, RA is an immune system disorder.
All I can say is rest while you are there and be sensible in the sun, you can always get extra pain relief from your GP to take with you, but don't forget you won't be able to drink alcohol with stronger pain relief.
Went and made myself a coffee and remembered I hadn't mentioned 'gadgets'.
My 2 girls bought me a battery operated jar opener a few years ago which I now use all the time. Also I have a few bottle openers of different sizes (good for opening the various lids on things like milk, water, drinks etc.) Also an electric can opener which I have had for years and also a gadget which helps with ring pulls. Potato peeler with a very thick handle I found easier (even easier still - other half does the veg for me now ! ). Other half changed door handles (previously round now lever) and taps on the hand basins and kitchen sink to lever type which has helped me no end. There are loads of gadgets which can help with the normal day to day things - I think this information may be available to you through occupational health at your hospital. It was so long ago that I saw mine - I am sure there are probably more things about that I am not aware of. Ask your rheumy team if you can be referred to whichever department covers this type of thing if you haven't been already.
Also, I was given 'resting splints' for my fingers and wrists to wear during the night, cumbersome but I have found them helpful at times.
Best thing of all is if you don't understand something RA related, feel like a grizzle (quite normal) and want someone to talk to or generally just want a moan, someone here will listen and give genuine sympathy (because we have all been in that place).
I'm new here too so HI!! Just read all the posts and you have some REALLY good advice here! I'ts the most frustrating illness but a good rheumy team will help you decide whats best for you. Unfortunately, they are restricted by NICE guidelines, that compassionate, caring organisation (NOT!) as to what they can give and when. It is a gamble as to which will work, but hopefully they will find something that suits you very soon.
I was diagnosed in 1994 and eventually had to give up work in 2007, but it was the best thing I did! I could rest when I wanted and I didn't have to get dressed and rush out at 8.15 whilst coping with the awful morning pain and stiffness.
Hi and welcome. I was diagnosed 18 months ago with RA and really feel for you- life is such hard work all of a sudden- even the little daily things which before were taken for granted.I pushed myself, struggling into work and keeping the house going- I think i was determined to fight it- WRONG! So STOP and take a rain check- the more you struggle on the more inflamed your joints get, the more pain, the more lethargy. Rest- i would consider taking some time off whilst you start to get your head around it. Ask yourself- do i need to do this, could someone else do it for me, could it wait for tomorrow- or the next day or the next ? If you were like me- living life in the fast lane, you have to adjust to being in 1st gear! Think of having a bag of energy- you can empty it out and use it up in 1 go, or divide it up so you can make it last throughout the day- little bursts of energy and lots of rest in between.Read 'the spoon theory'- just google it, it finally made sense to me. Be patient with yourself, there is a lot to take in and understand and as others have said it takes time to be on right medication to help with symptoms. Take care, x
It seems everyone has already logged on to say hello, so I'm a bit late to add any advice. I went through a whole barral of emotions when I was first told what was wrong; much the same as every one else and along with what Cherry says I also tried to fight it, then I felt very very lonely. After years of nagging by the Dr and basically getting really low that I just felt I could not carry on, I logged on here and have not looked back the compasion and support is amazing. Through talking to others on here I had the courage to start speaking up for myself at medical appointments and have since been getting the treatment I need. Good luck with your journey and remember someone is always available to have a moan to on here - what ever time of day it is someone is normally logged on. Kind regards Mel
After your holiday maybe you should consider taking a small break from work, if you still feel so tired & unwell, I took four months off after diagnosis, felt so crap, and looking back I really needed that time, to come to terms with RA, it really is a journey!
Maybe that is not possible for you, but remember your health & wellbeing are more important than any job/ career.
Good Luck & have a nice holiday, heat will probably help as will swimming.
I have fittflopps and find them good in the short term, orthotics are needed for long term prevention of damage I think.
Gina.
Hi Debbie,
Great advice from Gina there, if it is possible to take some time out from work....
thought i'd just give you my similiar experience, i'll try keep it short!
for around a year I suffered what I understand now was Palindromic Rheumatism but as I was pregnant the doctor just assumed it was hormone related, then when I was hit with my first RA flare in Jan this year, diagnosed in Feb and treated aggresively, now 6 months later I'm feeling so much better, never thought I'd feel like this again but I felt just how you describe; with the pain, tiredness, stiffness ect
Driving and dressing are not a problem for me now, I cycle rather than walk, delegated ironing and hoovering and life isn't so much about RA anymore; 6 months ago I couldn't lift a cup or go to the toilet without help...
What I getting at is you won't feel like this forever, once your meds are sorted and on the right ones that suit you. you'll be fine
50 hours a week!!!! bloomin eck, you need that holiday for sure lol
It sure is RA. I now have my foot on an ice pack lol. Off methotrextate due to a very stupid doctor who gave me nabumatone that he should not of done. Bad bad interaction so now off the meth and all drugs till they can get a base line. This means the drugs stay in your system and have to start all over again. Forgot I even had RA for 2 yrs till all hell broke loose. Now new doctor. If your tired rest dont fight it.Take folic acid..vitamin d and have your seritonin levels checked.
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