NRAS
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Shock

Shock

Hi all i am a young 45 Years old guy. Recently diagnosed with RA.

Went to the doctor after terrible pain in shoulder and other joints. i told him to either get rid of the pain or get the arm taken off as i could not cope with it anymore after several months of agony, he sent me off to the hospital ASAP.

No one seemed sympathetic to my pain until blood work came in. Guess they see all sorts of people

I am stubborn when it comes to pain like many guys and just put it all down to man flu

Been on steroids for three weeks and injections. now all has stopped as ferritin levels are too low to start methotrexate.

since coming off the steroids a few days ago i cannot even put a plug into the wall without pain and every time i move something else hurts. My sight is now terrible and have dropped several KG in months. my strength has nearly all gone. i am the guy that you would see at the gym 12 months ago with a personal trainer five days a week looking very toned and healthy. Now i am a mess and in serious pain.

have a terrible cough and who knows what is going to hurt next when i move, i am sure that i am in the wrong body. I am in bed by 8pm as just cannot stay awake and so dam tired. Sleep is terrible.

Check out my picture as this cat is not mine and does not like people but he made a bee line for me one day and would not leave me alone. Guess he felt i needed some help.

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Yup, it's a shock. But have hope as we've generally all coped with it, sorted out what treatment works for us and have come out the other side. I'm back to 95% normal from being unable to lift a tea cup or get out of bed at the start. I'm now fitter than I was before diagnosis.

The fatigue is dreadful when the disease isn't controlled. It does get better.

I've just replied to the post below yours, and included a link to a positive RA story. That could be you too... But if I may, the advice I would give you is don't be too stubborn. This is a powerful disease and you can't fight your way though it, so listen to your body, listen to your doctors, take the help that's offered and remember you will need patience. It could take a long time to get controlled, but most people get there.

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Hi Helix

Trying to get hold of the hospital here as today i am crippled since coming off the steroids and awaiting to start methotrexate on 8th May. This stuff had better work,, just do not like to be a burden on people or the system. Cannot go back to bed as i need to submit forms for help with council tax as not now working and to help sort out a PIP claim. oh what a minefield this system is.

I need to borrow a blue badge for a few days, if only, some of the people with badges are much more able than I. i was going to ask an elderly lady for help as i have been struggling to walk across the car parking areas at shops for weeks and then putting my shopping into the vehicle. Dare i ask for help or soldier on, problem is i don't look as though i have a problem. .

Thank goodness for online food shopping can order some cold food. I could not even open the microwave last night to get my meal or make it upstairs so slept on the couch. Luckily i have voice type on my pc.

Putting my home up for sale today as it is a listed building and the kitchen is on a different level, this cottage is not designed to people with mobility problems.

At least the sun is shining

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You are in the right place - we have all been there. Like you, fit and healthy rushing everywhere, running a market stall, to going up the stairs on my bottom, just couldn’t walk, the excruciating pain was unbearable. Today I am walking, the odd flared days when you forget you have the darn disease! I am 95% improved. I know it’s hard but you will get better, and when you do share it with the community. Try not to get to glum as stress means more inflammation. Take this time to relax, Epsom sky’s baths, eat well, and you will just be fine. Wishing you well.

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I am sure someone up there put me in another body for a laugh

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Sorry to hear that you have had to join our merry band!

It's really difficult for the first period of getting sorted out with the correct medication for your particular sort of Rheumatoid Disease. Everyone responds differently to medication and they haven't worked out how to tailor the medication to the individual yet (although work is progressing slowly on this!) Going on steroids helps at the onset while they sort out some medication for you, but as you have discovered when you come off it's as bad as ever unless you can find the right DMARD (Disease Modifying Anti-arthritis Drug) straight away - and that takes time to work as well.

But it DOES improve! Have a look at the NRAS site as well for information and advice - and use the helpline if you are worried. Please ask if you have specific questions or have a look by putting the key word in the search box - the same queries often come up again and again.

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Lets hope they sort it fast. where i live there is no cell phone signal only internet. my fault for living in the sticks.

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Hi and welcome to the club nobody wants to join. You are probably at the first and worst stage of this nasty disease and I'm sure everyone with RD (or RA if you prefer) has been where you are now and it stinks. The good news is that, with the right drug or drugs, you can have a nearly normal life back. Unfortunately, you will need patience as none of the drugs work quickly except for the steroids and they come with their own side effects. Please don't try to battle through as it really doesn't help. The shy bairn gets nowt. Wishing you well

J

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Hey gnarli where you from cus shy bairns gets nowt is a saying I’m said since a nipper being a mackem lol x

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Sorry, Nuttyshirlz but it's one of my lovely Cumberland son in law's sayings. I'm originally from Kent, now living in West Yorkshire. What's a makem?

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Lol Ah I see well that saying is a northern expression. It’s someone from north east Sunderland I’m a shy bairn 🙂

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It's a shock to say the least I'm having shocking pain at moment just waiting for RA nurse to ring me back hope you've got the number for yours they are really helpful get some strong pain relief of your gp it does help better than cutting them off , the cat knows your not well mine stays with me when I'm having a flair

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It is not even my cat he is a stray

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He's cute and there good company when your not well it's better than being on your own!!!!

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I can just about stroke him.

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Hi minty

Sorry you have joined us but when you have being so independent on yourself and doing it all alone this is a hard disease to except.

But has others have said this is not an over night thing.

You have to be patient and hope you find the right mix.

Good luck

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I was a young active 52 year old bloke when RA hit me for six some 15 years ago, so have a good idea how you feel. Not much I can add to what's already been said, other than it might be a good idea to mention that cough to a doc if you haven't already. And yep, amongst other menial tasks, who'd have thought that putting a plug in a socket could turn out to be such a bl**dy pain!

Good luck to you

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What is strange is I used to complain of sore joints years ago when I was in the forces and just took a fewibuprofen or tramadol

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Probably first signs of things beginning to go wrong. First signs I had was after a long walk up in these here hills...feet first followed by knees a couple of months later, which is when I guessed something was brewing and went to see about it. Not long after being diagnosed and BANG!!...I could barely walk down the garden let alone up a Welsh hillside. Methotrexate helped sort me out relatively quick back then. It's not great having to take these meds...I hate it!..but sometimes a man's gotta do what a man's gotta do! :-)

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Hi minty I am so, so sorry you ve joined the club; can't add more to what all the lovely people above have said. This site has been a lifeline for me as they understand when others don't.

One thing i would say, ring NRAS helpline, get their book on PIP - it's excellent, and i know it's probably last thing you feel like doing as utterly depressed but apply when able.

PS mine started last year with cough& breathlessness: this improved on MTX: thought it was flu, if only. It doesn't feel like it but will get better than this 😄

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Yes sure is a great site, my symptoms were kennel cough pain everywhere though mainly in the shoulder, cold sweats, 6 kg loss of weight just in the wrong body. I did not know which way to move without painIf I am honest I nearly shot myself over this in December last year as I could not control the pain. Don’t worry I moved back to the UK from Africa and fortunately sold my firearms as I was too close to the edge. The only thing that saved me was a friend shot himself over debt and made such a mess and caused lots of pain for everyone it made me re evaluate where I was at. I guess the alternative to pain is worse.

And still I am in terrible pain but trying to live with it. My problems is I need answers and a time frame as to when this pain will be under control. If I have this answer I can deal with it, same goes for selling my cottage. I struggled on and worked so hard restoring the place and now I must sell as my kitchen and bathrooms are on different levels and I just cannot get around. Even my car has sat for eight weeks on the drive. Where I live is very isolated and two busses per day. I might bypass the nhs and go for a full mri scam to see how far this has progressed

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I remember that at start: sledgehammered! I know it doesn't feel like it but this first few months is worst time honestly. My pain/fatigue manageable at moment compared to early days, 10 months on. It takes about 3 months for drugs to kick in (sounds ages I know) but they should provide steroids, painkillers, anti-inflammatories to tide you over. GPs or rheumatology helpline should help if it's all too much.

I am thinking of downsizing too as had to stop work but would see how you go first with steroids and drugs because that is so much to cope with on top of just being diagnosed, having to pace yourself etc. (I got fed up with talk about 'grieving' for old you and 'new normal' but it does take a lot to come to terms with).

You sound like you've got enough on your plate before adding house move into mix. That is so sad - your lovely house: can the council help with any adaptions for you? I don't know enough about this but I'm sure someone else on here will: PIP opens up a lot of things like that for you I believe. I couldn't drive at all at start (gears/handbrake!) and saving for automatic now but am back to driving locally at least. Take care of yourself whatever you decide to do.

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Waiting for them to come out but this property is con and thatch as well as listed. Somehow I do t think they will allow any adaptations as it is 658 years old made from cow sh1t and it was my dream escape to the country.

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Oh dear, sounds lovely, and I was thinking of Cornwall (family from there). That is sad Minty, but you never know, it is classed as a disability under equalities act which might work in your favour, fingers crossed they can offer you something.

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We all have dreams an sad to say if only they came true, you have had a lot to cope with an stress is a massive trigger for ra once you get in the system they don't mess abt and I'm sure you will feel better once you start to understand this decease and all it's ups an downs but there are some lovely people on this forum who are happy to help and it's good to talk x

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With you literally I'm afraid, cat knows you are on pain

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I am sure that cat knows something was wrong.

Animals seem to know

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Well Minty I sympathise with you but you will get through it and come out the other side but there will be ups and downs and this disease takes no prisoners but work with it and once you get the meds right then you can start to build your body up again. I started off with RA in 2015 when I couldn't get out of bed and it's taken me until last August to get the right treatment and although I have my ups and downs, in the main I'm not to bad at the moment although I do get a steroid injection to tied me over between appointments I'm able to go to the gym most days and go to body conditioning 2 a week to build my muscle up again and at 53 I'm feeling as good as I've felt since having this disease and find that my day goes quick as I'm medically retired and not any worse off than when I was when I was working, hope you get things sorted out but be patient as this disease lets you know when to slow down and take things easy

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If only I could get to the pool but it is 8 miles from me and no public transport where I am as in sunny Chawleigh Devon.

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Hello and welcome.

It's a poopie illness and we all feel for you.

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Hello minty187, this is a good site and any questions you ask they will get answered on here. Can you not ask for pain killers from your doctor while you are waiting to get sorted? Or a steroid shot? I find the fatigue is one of the worst side effects. I work full time and sometimes I have to come home and go straight to bed.

And listen to your body don't try and do everything all at once when you get a good day.

Take care. Carol

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Today the consultant has informed my doctor that it is time to start methotrexate even though ferritin levels are low and my liver is not functioning at 100%

Trying to get my head around the script.

It states 15mg six tablets to be taken weekly is this all in one day or every other day

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It will be 6 x 2.5 mg taken all at once, once a week - total 15mg. That’s s a low dose so don’t worry about it. You will probably only be allowed 4 weeks supply at a time. You may also get a steroid injection to start you off as it takes about 3 months for the MTX to start working. I noticed an immediate improvement but that would be the steroid but now at week 12 and having changed to 15mg injections, I am feeling almost normal again. Go for it and keep in touch with your rheumatology nurse - they want to make you feel better - and you will. J

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Define normal 😀

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Methotrexate is taken on one day each week. It's also advisable to take folic acid on the days you don't take the methotrexate dose. This helps to minimise side effects. Methotrexate does not act immediately it takes time to become effective. You may not notice any change for 6 to 12 weeks. It's important to look after your liver, so cut the alcohol. It's is a powerful drug but if it works for you it is a life changer. It gave me my life back. Other drugs can be added, most of us take combinations of drugs to hold this dam disease in check. These are different for each individual what works for one doesn't work for all. You need to be patient but it will get better. Remember it can affect all age groups even children. In the longer term you may need to cut back on high intensity high impact activities but you will be able to drive again and may well manage to live easily in your cottage once this under control. Don't make major life decisions just now. Be patient and be kind to yourself. Seek help for others, ring the NRAS help line.

Hope you find some relief soon and your rheumy quickly finds the best drug combination for you.

Big hugs

Mall

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Fortunately I seldom drink as have always been a fitness freak.. will start the mess tomorrow as it is still not clear if I take one pill a day how do I take the folic acid if I must take six pills in a week, I mean take the folic acid on alternate days as there are only seven days in a week

Night sorry too tired

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I take the methotrexate in one dose on one day of the week. The other six days I do not take methotrexate. On these days I take folic acid. I usually take my methotrexate on Thursday after my evening meal. if you are unsure about it give your rheumatology nurse a ring. Also there are some good information leaflets on all the drugs. Sounds like who ever you saw that prescribed this didn't spend enough time with you giving you all the necessary information. It can all be a bit overwhelming to begin with. Lots of things to take in and get your head round. It is a drug that can hit your liver hard hence the advice about keeping alcohol to a minimum especially when you first start on the drug. This should all be in the leaflet accompanying the drug. You will have regular blood tests to check if it is working and that your liver is ok.

Please don't take methotrexate on more than one day each week. If you are unsure check this out with your Dr. before you start taking it.

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Hang on in there!

I promise you it will get better, but it won’t be fast - nothing ever is.

So many if us have been in the same situation as you - it’s soul destroying. But, there is life again - I’m about 90% normal these days. Yes, I can’t do some things I want to do but I can do a lot if things.

The drugs are sometimes horrible, side effects are miserable, and they will seem like they are taking forever to work, but you WILL feel better, life WILL be bearable again.

I wouldn’t do anything drastic like selling up whilst you are going through this bad patch. Try and ride it out (if I can anyone can) and things will improve. You might find you will be able to stay in your cottage.

Sending you a hug! x

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I would love to stay here but the doctors surgery is five miles each way. No public transport. We do have a pub. I am completely cut off as now cannot drive. I purchased this cottage for a rural retreat. How does the saying go. Be careful what you wish for.

The cottage kitchen and bathroom are on different levels.

I have only a log burner and back boiler for central heating and separate immersion heather.

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When I was diagnosed we had just bought a place needing a lot of work at 2000ft altitude, with the nearest doctor 20 miles away, no public transport and stairs and ladders everywhere. There was no way I could drive with puffy knees and hands that couldn't hold anything let alone a steering wheel and a gear stick. I was pricing up electric wheelchairs and off-road mobility scooters on the internet.

8 years on and I'm still here and it's fine. I got to know neighbours pretty quick, and they were great at giving me lifts to the shops and the nearest bus stop 5km away. It's amazing if you ask for help 9 times out of 10 people will give it happily. Many small villages have volunteer schemes to get people to doctors and hospitals. It's a big step to take if you are used to being fit and healthy, but you are the only one who will feel awkward about it.

These days I now help others as I have no need of help as am pretty much back to normal.

So don't do anything too hastily.

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I am sorry you are suffering so badly at this time, each day feels like a month! Not wishing to add to your issues but was a little concerned to hear of your bad cough and losing so much weight and just wanted to highlight if you have been checked for TB ( Tuberculosis). Only, I have had to go through this screening as a compromised immune system can trigger latent TB to become active ( unlikely, but can happen). I believe other underlying infections, too. Certainly worth raising with your Rheumatologist as it’s an easy set of blood tests at this stage! Best of luck.

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I wondered about another disease myself...partly as minty says he's returned from Africa so could have been exposed to many different things. But you are only screened for TB if going on biologics here. Methotrexate doesn't have a big enough immune compromising effect for it to be standard.

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Hi Minty.Hang on in there know how awful this is for you.You could do with staying on steroids until something sorted.It took a year to get the right meds for me and without steroids I could not move and just cried all the time.It will get better but takes time to sort.Thinking of you do not despair.

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I will search for a new property. Looking at Stamford or Oakham in the UK as it is closer to friends and if I need childcare in the middle of the night friends will take my daughter. Although Devon is nice it is very isolated in some parts.

I do. Not even know my neighbours name

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