New to rheumatoid arthritis

Chris_R

Hi @Beano100

Welcome to the online community,what a lot you are going through at the moment,what with RA and the worry over money and heating bills aswell as food bills, it is hard to make ends meet for a lot of people. You are obviously apprehensive and anxious.

In some areas there are community centers that give at least one meal a day,you could maybe check that out.There are also Food banks and services like community fridges that could help with food.also Citizens advice would point you towards help aswell,they are all in the local telephone book if you find it hard to get out.

Here is a link that may be useful to you.

https://www.versusarthritis.org/

Our forums are there for you to chat to people who understand what you are going through as everyone has different forms ao arthritis they also will give advice and help.

Please keep in touch and tell us how you get on.

All the best Christine

Beano100

Hi all, I have RA, I already had arthritis in my spine, my legs but then my hands started to lock, I could not move my fingers first thing in the morning and it takes time for my legs to wake up and I now need help getting in and out of bed I've already had a double heart attack and then a stroke it just seems one thing after another I'm fear of my electricity and gas bill coming through the door my bills was £170 this time last year a month what's it going to be now I've already cut down on food I have one hot meal every 2 days I have some digestive biscuits 2 times a day the £150 we got off the government was a joke and this £400 is a joke my bills this year are 3 times of what they were last year and the energy companies are getting away with holding us to ransome Conservatives don't care all there heating bills are paid for even £300.000 for one MPs horses to be heated in the winter they don't pay gas or electricity so they just don't care I can't afford to buy new batteries for my disability scooter there £900 how the hell they came to this I will never know I have not been able to afford to charge them up since march last year so now the £900 batteries are dead it stinks

Baloo

I really like the article about emotional wellbeing. I think to be in touch with our own feelings is important as it can then become like an early warning system that conditions are becoming worse, and knowing what to do, we can near enough pull ourselves up by our own bootstraps before it gets even more worse. My first feeling after catching arthritis was I become old overnight. I regularly check now if I am not feeling at my best.

bill1965

https://community.versusarthritis.org/discussion/54886/new-to-rheumatoid-arthritis

hi I've got osteoarthritis in knees shoulders hips I still get on with it no point worrying about it I never did its life so I just get on with it you be OK don't let it get you down always someone else in a lot worse then we are take care don't worry live each day as it comes .

Arthuritis

Hey Beano, so sorry about your situation. I haven’t any magic solutions but perhaps a couple of suggestions:

1. sign up to Trash Nothing, everything on it is freely given away, include your situation in the profile.
2. You can make requests for what you want. I’d suggest requesting flexible solar panels first, as they are light, and can charge your mobility scooter. You can string many panels together to increase the amount of electricity going to charge your scooter. You would need to watch a few YouTube videos for beginners or read up, but I assure you it’s easy to learn. I cut my electricity bill in half doing this. Also if you have dual rate electricity (day rate/night rate) use cheaper night rate for those demanding appliances eg your scooter.
3. There may be food banks near you, they are often very discreet. Do sign up to Olio, which is like trash nothing, but for food. Also community food charities/meals on wheels type things. These tend to be local area specific so you’d need to do a bit of research. (Trash Nothing & Olio are apps usable anywhere, but typically the giving occurs locally).
4. Unfortunately the problem with the money is not the amount of £ you have, but it’s reduced ability to buy you what you need. Successive governments have destroyed the value of Sterling, so having more of a currency that keeps declining only temporarily delays the problem. Nobody complains about this devaluation because most don’t understand what has gone wrong with their £, and think it’s simply because everything costs more, but it’s because the £ buys less. It is less credible and desirable as a currency, and when foreign investors see it as less desirable, its value falls.The currency of countries with strong exports and market connections, efficient government use of money and not badly in debt is highly desirable, and that currency will buy you more goods. The previous govt sold off our National gold for peanuts, then kept borrowing to prop up highly paid government non-jobs, to make it look like there was high employment, but it was hocked up to the hilt, and when it could borrow no more, left a post it for the next govt saying “the money’s run out, good luck!”. The next govt destroyed any prospects of recovery by taking the UK out of the common market with our biggest trading partner, through the exit referendum and their cronies made millions selling Sterling Short, this resulted in farmers with produce rotting in the fields, small exporting businesses going bust because they can’t open up a European branch office and the customs clearance is now horrendously complex and expensive. This is of course a brief summary of why your £ does not buy what it used to be able to, why you need more of it. BTW, did you know Scotland has so much renewable electricity that they don’t know what to do with it, while England has to import electricity at a hefty price from France, because there is no big transmission grid to bring the Scottish excess production to England to lower costs. But we will have HS2, to allow people from the North to rush to the south(!). Sadly a transmission pylon has no photo op or grand opening that politicians love.

The apps above are very good as the people signed up on it are amazingly good kind and generous, so do please try. Maybe someone with a pick up truck might be able to bring you a load of solar panels, often discarded after big projects do their renewals, and end up in the council dump, but even discarded panels have over 80% capacity. They even work in winter sun! Try to learn as much as you can about solar. The sun is always there, and will never send you a bill for its services.

rebecca1001

So today I'v been officially newly diagnosed with an Auto -Immune Rheumatiod Arthritis at the hospital. A invisible chronic illness which is unfortunately not a curable disease. It's something I will have for life! It's about learning to manage my pain the best I can. As everybody knows I'v had problems with both my knees and joints and legs, it all started suddenly last year. Over the past eight months I'v had trouble walking up stairs, where my legs/ knees swell up constantly and I was unable to raise them. I'm unable to bend down on my knees or run. It has also affected other parts of my body like hands, wrists and arms. Myself and my family had a feeling it would be this but there was always that doubt it could be something different too.

Today has been a sigh of relief to hear this news officially, its been a long time waiting to see if it was anything else wrong. I have had x-rays of the chest, feet, both hands wrist and left arm. I also had a blood test done. The next stage is to put me on a new different medication called METHORTREXATE which is a potent drug, will wait for results first before they can talk to me about this. A long life drug.

Anna

Hello@RebeccaTaylor1991 and welcome to the online community,

I understand you’ve just been diagnosed with rheumatoid arthritis after several months of joint pain and difficulty in walking. As you say, it can sometimes be a relief to finally find out your diagnosis. Although there is no cure ( yet) for rheumatoid arthritis, there are several treatments, including the one you’ve got, methotrexate, that have made a huge difference to the lives of people with this condition, including many of our members. Everyone in this community lives with some form of arthritis and are happy to share their experiences and offer support and advice. Do have a look round - maybe tell us more about yourself in the Say Hello forum - and post any questions you may have.

Since you’re just beginning on your journey, you might like to have a look at the website below, especially for people who are newly diagnosed:

https://www.versusarthritis.org/about-arthritis/newly-diagnosed/

Do let us know how you’re getting on,

Anna ( Mod)

Woofy

https://community.versusarthritis.org/discussion/54886/new-to-rheumatoid-arthritis

Hi Meli.
I was diagnosed with RA two years ago just out of nowhere. The hospital are still trying to get my meds right, which can be the case sometimes. Yes you will lead a normal life.
you will learn that you can still do the things you enjoy, but you might have to do them in a different way. You will learn to pace yourself when you get tired and sore, which can be frustrating at times. If you feel a bit down sometimes, that’s ok too. Don’t try to be brave ( like I tried in the beginning) if it all gets too much ask your health professionals for advice, delegate jobs you find difficult to others if you can, which is what I found the hardest. Don’t be hard on yourself either, you didn’t ask for this it just happened. I found organising my cupboards a bit better so I can reach things, and I have a few nifty gadgets that I use in the kitchen on days when my hands get a bit stiff. You will learn to adapt.
lastly we are all here in case you want to have a moan, cry, laugh.

grogi

Hi all,

I went to the GP as I had morning stiffness and a bad shoulder, can’t use my hairdryer, problem with my knee (just above) can’t bend up and down properly, sore elbows and some problems with feet.

The GP. did a blood test and I tested positive for the RF factor but it was a low reading.

The GP told me I definately had RA, I asked him twice. I was very upset etc and waited 7 weeks for a Rheumatoloy appointment, I managed to get this so soon, as I spent a lot of time chasing.

I saw the Rheumatologist, who I thought was excellent and he spent a lot of time with me, this resulted in him telling me he couldn’t see any evidence of RA at that time and to trust him, he knows what he’s looking for. They did an ultrasound of my hands, feet and elbows. The elbows showed no signs of RA just bursitis. He said some people test positive for RA but don’t have it.

I left feeling very confused, not knowing what to think.

This appointment was at the end of April.

Since then I have now developed Reynauds. It seems quite bad as finger ends are sore.

I saw a different GP who said it could be hives, wouldn’t listen to me at all, when I said it could be connected with RA, she said you haven’t got that, so it’s muscular skeletal, she wouldn’t discuss my joints, even though I wanted to tell her the stiffness is getting worse. She opened the door for me to go in the end and I was in tears.
she gave me antihistamines for hives.

I went to see another doctor at our local hospital which we are able to do if we can’t get GP appointment, she said to throw antihistamines away and it was Reynauds.

I’m in limbo now I feel like the morning stiffness is getting worse it seems to be all over my body and my knee is getting worse and my leg below the knee can lock up when I get up.

I know a lot of you are in a lot of pain and a lot worse than me but i just feel like I’m in the early stages of RA and it’s scary that you have to wait until things get worse until you can be diagnosed.

I’ve got another GP appointment in 4 weeks but they just don’t seem to want to know now Rhuematoloy have said at that time no evidence of RA.

In addition to developing Raynauds, the worsening morning stiffness, I have also had a bad neck for about 3 weeks.

I have no swollen joints.

Just feel in limo, worried and scared really.

Woofy

https://community.versusarthritis.org/discussion/comment/723322#Comment_723322

Hi. You are having a rough time. I had a similar experience when I started my RA journey. Chronic pain in all my joints, but not much in the way of swelling etc. The pain was unbearable. When I got my hospital app about 6 weeks after I saw my GP, my rheumatoid factors were not that raised, so they put me on Hydroxychloraquine which didn’t help, and gave me mouth ulcers.
No confirmed diagnosis. I have since gone on to be diagnosed with RA. After many tests, I am now on methotrexate injections, and Leflunomide tablets, to try to get things under control. If I am no better in August, then it will be biological injections.

I think there are some people, where the journey takes a bit longer. Don’t give up. Go back to you GP if you still have chronic pain.

It’s miserable. I have had a few courses of steroid tablets, which help to control the pain really well for me. Maybe your doctor could give you a try on them. Good luck.

grogi

Thank you for your reply. It sounds like you have also had an awful time.

I can’t say my pain is unbearable, that must have been awful for you and I know lots on here are going through so much.

I just feel like things are not right with my body and the stiffness through the night is getting worse, it’s my legs, both arms and both hands. I’m trying not to curl my hands up when I go to sleep. The hands are the worst not nice.

The reynauds is not nice either, that’s if it is reynauds, all my finger ends on palm side are sore and when I do anything with my hands they go red, then I get this weird thing where the veins turn a funny blue and show through.

It just seems a coincidence that all these joint problems started round about Xmas, apart from the neck thing, which is recent, reynauds has developed.

Because the rheumatologist couldn’t see any evidence of RA in my hands and feet, he said that where is normally starts he didn’t check the other areas out.

I’m just worried and scared really feeling like what’s going to happen next.

Lynne_16

Hi everyone, I have been struggling with pain and swelling in my hands and feet for 7 months and I finally have an appointment with a rheumatologist next week, which I hope will give me a diagnosis and some relief. Recent blood results indicate inflammatory disease and the GP suspects RA. I have struggled to get my GP to acknowledge my symptoms as early blood tests didn't show any inflammatory signs and x rays of hands and feet showed signs of OA. I am now worried that if it is RA, treatment hasn't started early enough. I have several deformed joints on my fingers and lumps on my palm that I think I will be left with. I feel very let down by my GP as they haven't' listened to me or really looked at my symptoms. They only completed further blood tests on the insistence of a podiatrist. I wondered if anyone else has struggled with their GP? I feel like I have been left to get on with it. I was prescribed naproxen which has made no difference at all and I have told the GP but they didn't offer any alternative. I feel scared about what the future holds, I am 52 and I still work and enjoy sports and I don't know if I will be able to get back to this. Reading some of your posts has given me some hope. I am trying to stay positive but some days it is difficult and being in constant pain is exhausting. I am sorry for the long post

Knitpiggott

Hi, I've been suffering with painful stiff joints, fingers, wrists, elbows, shoulders, knees, ankles and feet, for over two months, came on suddenly out of nowhere, making everyday life really difficult. My GP referred me quite quickly, although it's felt like ages, and last week I saw a Rheumatologist at the hospital who gave me the diagnosis of Rheumatoid Arthritis. I'm on a 4 week course of steroids and they are suggesting I start on Methotrexate after this. I'm 53 and feeling a bit overwhelmed about what this means for me. The steroids have eased pain and swelling, but I wonder what to expect, am I always going to have pain? I work full time and am wondering what impact this is going to have on me at work. I feel really tired and trying to process it all mentally. Thanks, it's been helpful to read the various comments in this thread.

PJoanne

Hello @Knitpiggott

Welcome to the forum. It's good to hear that your referral and diagnosis was quick. Here are some links for you to read.

This is about RA : Rheumatoid arthritis | Causes, symptoms, treatments and about managing pain :

Managing your pain | Treatments and self-help . This is a link about working and having arthritis : Work and Arthritis.

Best Joanne