Newly diagnosed, confused, in pain and waiting for a hospital appointment - what help is available to me?

[TheHopefulRealist]

I started having pains last year, at first only in my upper arms. I would sporadically get one to three days of immense pain, followed by a week of muscle weakness in that arm (sometimes I would have to lift the bad arm with the other arm as I felt like I had no control over it), but thankfully it was usually only one arm at a time. Everyone assumed that it was Brachial Neuritis as the pain was only in my upper arms, at times 'radiating' out to my shoulders and neck, but within a few months I started getting pains, redness and swelling in my wrists, fingers, ankles, and as of yesterday, - my hip. I am 35 and a single working mother with a mortgage, living in a house in need of a lot of repairs. Since late last year the pain has gotten so bad I often struggle get out of bed, wash or brush my hair, peel potatoes, clean my house, put my make-up on, even go to the loo and wipe myself - I feel so helpless.  It has started affecting my work now and what makes it worse is that no one in my office really seems to understand how bad RA is - I mean I did not know myself until I was told I have it and then did some research online. I assumed it was 'a bit of muscle and joint pain' before, only now I realise how debilitating the pain, the fatigue, the lack of quality sleep really is. When I told one of my bosses he just said I am 'too young to get Arthritis and that I should exercise more'.  I had to try and explain to him that you can't exercise or even move properly during a flare-up, but I felt  as though he thought I was talking rubbish. I am fit and slim so it's not like my RA is down to being overweight, and I also eat very healthily.

At the moment my symptoms are very bad and I have them every single day. Most nights I cannot get to sleep as I am in so much pain, i.e. for the past days it's been my left upper arm and shoulder, and my right hip so I can't get comfortable on either side. Since this morning, my right wrist has started a bbit and the inside is going red.

The Doctor gave me Naproxen but they don't seem to help much and they make my stomach ulcer hurt and burn so I have to take Omniprazole as well to stop my ulcer getting worse. Then he gave me Cocodamol (15/500) and they do take the edge off the pain a little, but still not enough for me to function or get to sleep. I tried the 30/500 Cocodamol but they make me drowsy so I can only take them at night time. Even when I get to sleep I wake up in the middle of the night and I can't move and sometimes I cry with pain and frustration. I  have to set my alarm an hour early and take pain killers just so I can get out of bed and get showered and dressed. Last week I did taht and then I went into such a deep sleep, I did not wake up until 20-minutes before I was meant to be at work, - I ended up being an hour late for work and got in trouble. Today I was late again - albeit only 10-minutes, but the fact it takes me twice as long to get ready as it used to, and twice as long to walk to the station and then walk to work, coupled with train delays (My London Overground Service is notoriously late all the time) means I struggle to get into work on time, so I end up staying an hour or more late without getting paid for it because I feel bad, even if I was only 5 minutes late in the morning.  Also, often I only get around 4 hours of  proper sleep and I am sometimes so exhausted that I have actually nodded off at my desk a few times (no one noticed, thank God). I just want to cry all the time and I feel so alone. A lot of people don't seem to understand and I can feel they judge me when I can't do certain things, like my boss asked me to hover the floors last week, or empty the bins and bring rubbish and recycling out, wash dishes etc., and even though I try to only use unaffected limb, the next day that one will often be affected too. By the time I get home I can't even do my chores at home as I am in pain and tired. Last week I ended up with both wrists swollen and was so immobile that I could not type or brush my hair or get dressed and I ended up breaking down and crying at work. I struggle every day to type, get up quickly to answer the door, etc., but usually I say nothing as I don't want them thinking I am using this to get out of doing certain tasks. I have been with this company for over 10 years and even though I have thought of leaving this job and getting one closer to home with shorter hours, I can't as I need the money, - I have a suspended possession order on my house and a bankruptcy petition against my name so if I do not make the payments every week, I will lose my house, - I am literally living on the edge with no savings to fall back on, so just one weeks loss of wages would cripple me.

I am scared knowing I will have this for the rest of  my life and worried about how I will cope. I have no family here as they are all in Germany, and very few friends, so have no one to talk to about this. Can anyone advise me of pain relief that works, of natural treatments or foods I can eat that may help with inflammation, exercises - anything at all? I eat a healthy diet already but perhaps I can tailor it to help my symptoms while I wait for my appointment. Also, will I need a Carer to help me get dressed and do housework as I am struggling already and I am only in the early stages, or will the medication they give you help get rid of the pain? I am scared I will lose my job due to being late too much or not functioning due to pain and exhaustion, - if I did would there be any help available  to me, i.e. with mortgage, bills and caring for my son? I am not sure if having RA is enough to get disability allowance or if they would put me on JSA and make me go to the job centre several times every week for their frankly useless interrogations. I don’t drive and the nearest one is miles away so all these things worry me so much. Sorry for the long post but I have no one to turn to, so any advice is greatly appreciated.

[Matilda7]

So sorry to hear how awful you are feeling, and what complicated problems you have to deal with.

Have you thought of phoning the free NRAS helpline: 0800 298 7650?

They are very supportive and will be happy to talk to you, do give them a try. They may well be able to help with many, if not all of your questions.

And you will also get lots of support from this forum.

Do hope things improve for you very soon.

[EmmaS-NRAS NRAS]

Hi HopefulRealist,

Sorry to hear about your recent diagnosis but please be assured there is plenty of support out there, you're not alone.  

As Matilda7 said below, there is a lot of support on this forum and you can call NRAS Helpline, they are open from 9.30am to 4.30pm Mon to Fri and have a wealth of experience of speaking to those who are newly diagnosed. We also have a very comprehensive website nras.org.uk where you can find lots of information - whether it's what to expect from your 1st appointment, coping with work, family, medications, benefits and much more.  There are also free publications for you to download or request by post.

You also might find it helpful to speak to someone on the phone who has RA themselves, we can match you to one of our NRAS trained volunteers, perhaps someone who has children and a similar age. Again, get in touch with our Helpline team and they start the process of finding you someone to speak to. 

We do not have many groups in the London area but we do have a few and we often hold one-off events there so hopefully there will be opportunities for you to meet others living with RA in the future.   

Do get in touch with us if you need to and we hope you find the HeathUnlocked forum helpful. 

With best wishes,

EmmaS-NRAS

[achydunlin]

It's not the RA in itself that will get you the benefits - it's how much a condition affects you and to me it sounds like you are very disabled (at the moment) and it's not very well managed.  Is there a HR department or personnel department you can talk to, that can help you make some kind of adaptations to your place of work to help you?  Or have a chat with your boss?  It sounds like they are putting a lot on you and perhaps a bit more understanding wouldn't go amiss.  How much sick pay can you get if you went off sick for a while - check your contract of employment, a few weeks may give you a bit of breathing space.

The RA helpline is definitely a good start.

Re the debt you are in, have you tried moneysavingexpert.com?  I find they are excellent at giving advice re how to consolidate debt and reduce it.  You might find you can reduce some of your payments to a manageable amount. 

I really hope you get sorted, you sound like you are at the end of your tether and I really feel for you x

[Birthdaygirl]

Glad you posted although really sorry to read your story. Have you been referred to a rheumatologist? even if you have please go back to your GP and ask for help. If it helps let them read your post to us all here. You need urgent medical assessment and a treatment plan. 

NRAS helpline and volunteers are very good to talk to, they have loads of information for those suffering from this dreadful disease and they also have some excellent leaflets for employers. Hope you get the help you need very soon.

Keep in touch. 

BG

[helixhelix]

You poor thing!  You sound very, very low.  But please try to hold on to hope.  There is a very good chance that once you finally get to see a rheumatologist and get treatment then things will improve massively.   Like you, when I was first diagnosed I was terrified of what the future would hold as I couldn't manage to do anything.  I could barely get out of bed.    But now I'm 95% normal!   For me the drugs have been amazing, and have given me my life back.   And that's what happens For the vast majority of people, so you could well be among that group. I

It's important that the rheumatologist sees you at your worst, so do take photos of any swollen joints and keep notes of your symptoms.  Chances are that on the day of your appointment you'll be having a good day.    You might also want to talk to your GP about having a short course of steroids to help you through this bit.   It's difficult as you don't want to mask things for the rheumatologist, but you do also have to cope right now.  If the hospital appointment is weeks away the  could be worth it?  But ask the GP to do blood tests of your inflammation levels first so that's on record. 

Until then, try to look after yourself the best you can.  Eat well, and simply. So fish and vegetables and stay away from high fat & sugary diets.   Look at the stuff on complementary foods and see what interests you.  My personal view is that it's also important to like what you eat - so no point forcing yourself to eat things you detest!

Exercise is difficult when you are flaring like it sounds you are, but it is import at to keep moving.  Look at the NRAS site for range of movement exercises, as these are very gentle and keep flexibility & mobility.  Very gentle swimming can also be good.

And sleep as much as you can!  You need to rest as much as you can.

And phone the help line, they're great! 

[nomoreheels]

Hiya THR & welcome. Right, to start I hope it helped somewhat to get all your troubles down & out there. You're in the right place if you're looking for support, experience & advice from those who've been where you are now, waiting for a diagnosis & treatment. It's good you have because some reassurance may help at this time, where you are right now is probably the worst you will be. Yes it is chronic but treatment nowadays is full of options, from DMARDs to biologics with many meds your Rheumy can prescribe to bring your disease under control. It is difficult the period from your GP suspecting you have an inflammatory disease to the wait to your first Rheumy appointment, diagnosis & starting treatment. Your GP has prescribed as he's able, the only other thing he could possibly do is prescribe a different NSAID (I don't respond to naproxen either) or change your pain relief but the thing with that is one 30/500mg co-codamol makes you drowsy so you'll probably find the alternatives as bad. How long have you to wait until your initial appointment, were you given an approximation? I ask because depending on what he thinks he could maybe prescribe a short course of steroids or a steroid injection, but, if your appointment is likely to be soon that really would not be an option. You see steroids work on inflammation & whilst that's helpful when on appropriate treatment (specialist meds) to get through a flare it could hamper diagnosis if they're still working on your inflammation when you see your Rheumy. If he does do ask him if he'll take your ESR/CRP bloods, you need to ensure your inflammation levels pre steroid are recorded. It is better for you to be drug free when you have your diagnosis so reliable baseline bloods (inflammation levels, liver level etc), imaging & of course physical examination (DAS 28) is performed in order to accurately diagnose & prescribe the appropriate meds. You can try using hot or cold compresses, whichever you feel relieves the pain somewhat, 20 mins tops for cold (bag of frozen peas wrapped in a towel work well) or a hot water bottle or electric heat pad, again 20 mins each session. Rest as often as you're able & try not to stress, I know that's probably impossible just now but it's known stress exacerbates symptoms.

There are publications from the NRAS which you can download or request the leaflets to give to you employer nras.org.uk/work-and-benefits just so he knows you're not too young. What he thinks you're suffering from is Osteoarthritis, a common mistake & why some of us prefer to call Rheumatoid Arthritis Rheumatoid Disease, it's the Arthritis tag which causes confusion. What you will probably be diagnosed with isn't wear & tear arthritis it's systemic, it can affect not only the joints but also tissue & internal organs & as such is treated very differently. The link also give information on benefits which may be well worth a read for the future. PIP for example isn't means tested so once you're receiving treatment & you see how well or not you're managing with things you could consider applying. It's divided into 2 parts, daily care & mobility. Not something to apply for before diagnosis, although process does take some while, but that not being on meds yet you risk your application being denied because with treatment you'll improve how you are at the moment, look at that more carefully once you know what you can manage & what you can't.

I hope at least a bit of this helps, ask away if there's anything you think of, we've lots of info & experiences we can share with you.

[Hidden]

I remember being in exactly the kind of pain you describe. After six months of Methotrexate and Hydroxichloraquine the pain became minimal and after three years I was able to come off these meds and I'm very lucky to be a rare one for whom RA has stayed away so far. When i read your description of how you are feeling I just wanted to tell you that the majority of people find the drugs work very well. Take care and do take photos of any swollen joints as others have suggested. 

[Beaches2]

Hi and welcome

You have had some good replies from the lovely people on this site and hopefully you will feel a little less alone with this. if you haven't yet seen the rheumatologist, then at the moment you just need to try and manage the pain with what you gp gives you plus heat? Cold Packs? Anything you find that brings some relief. Can you take some sick leave while you wait?

With regards to work, does your company have an occupational health dept? If so, get yourself an appointment with them.RA comes under the equalities act and so you are entitled to reasonable adjustments at work. It sounds like you can't afford reduced hours, but they may agree to changing your duties a little? Allowing you more rest breaks? It's the law, they have to offer you things that might help. 

The bit before you see the rheumatologist is the worst bit, after that things should start to slowly improve, they will often give you a steroid injection which like a magic bullet will make you feel much better while you wait for other treatment to work. They will also start you on drugs which should help control the disease. Like yourself, I thought things would just get worse, but that's not the case, there are good treatments these days that should enable you to lead an almost normal life. Remember that people come on this site for help when they are having problems, there are thousands of people who just get on with their lives fine once they are on effective treatment.

Keep hold of the thought that things will get better for you, you just need to find a way to manage this first bit until you start treatment. ......think I'm probably a hopeful realist too 😉