Seeking understanding

[kgk92]

I was diagnosed with seronegative rheumatoid arthritis 8 weeks ago. I am 40 years old. I used to work in a factory 40+ hours a week, have 3 teenage sons, and used to enjoy crafting and fishing. I have a hard time just getting out of bed these days. My rheumatologist started me on 15 mg meloxicam and 400 mg plaquenil daily. It's not helping yet. I feel so alone in this as I know no one who has ra. My kids nor my husband understand my pain or exhaustion. I'm just looking for anyone who knows what this disease consists of so I know everything I'm feeling is not just in my head!!!

[Jacki08]

Hi-- I too was diagnosed with sero neg RD 6 weeks ago--- and I know exactly how hard it is to get your head round things. I dont know which part of the world you live in, but diff healtg areas have diff ways of treating this horrid disease--I am on methotrexate and preq- and they can take up to 3 mths to work. I am probably not the best person to give you advice , being a " newbie" myself, but there are some lovely people on here who can and will be supportive.Also there is a help line ob this site that you can ring. This site for me has been invaluable , as everyone is the same boat. You can ask any questions , however silly you might think they are-- and sone lovely person will answer. Good luck - Jacki. x

[sylvi]

I was 45 yrs old when i got diagnosed. I managed to continue to work until 5yrs ago. I was a mobile caterer and i loved my job,but i was becoming unsafe with my hands as i was losing my grip. So i had to move jobs and i ended up in a office and had things gone alright i might have still been there despite my health going downhill fast. Anyway in the September of 2009 my company got taken over and i got finished. My Remploy advisor told me i was not fit for work and sadly he was right. I haven't worked since.

Get some information from the hospital and off the internet and sit them down and read every thing you can find and if you van find a dvd for them to watch do that as well. I am lucky in that i have a lovely hubby to care for me. He didn't retire from work until he was 68 he intended to go until he was 70,but my health and his hearing put a stop to that and thank goodness as this year has been horrendous for me.

It is not in your head i can tell you that much. I know have firbromyalgia and cfs as well. If you can afford to cut back your hours from work do it as it will benefit your health. I am not sure if this has helped you at all,but i will send you a hug.xxx

[benjijen]

Hi, I know how you feel. I was diagnosed 4 years ago and have been on various medications. The last one was Humira which I injected once a fortnight, it was brilliant for 2 years. Then my body decided to react and I had to come of it. I am now being taken off my other meds, sulfasalazine to see what happens. That will leave me with just painkillers until my appointment in February. Not happy. I think you'll find a way of dealing with the pain and discomfort, but I've found that the fatigue doesn't let up. I work full time as I live alone so need to but it can be so draining and I often end up staying in bed on a Sunday. Sometimes you really wonder where your life went. You are not alone as you will see if you read this forum regularly and you WILL get some respite from the symptoms through medication and 'pacing yourself' (I personally hate that phrase!). Hopefully your current meds will kick in soon and you will feel more positive. Good luck.

[Jora]

Just a warm Welcome to this forum. And to remind you that the ones who,are in remission are less likely to use the site. So don't let that skew your optimism. You are not alone. I agree that it's hard to explain the pain and the level of fatigue. We just have tell ourselves that tbe lack of comprehension is largely their problem. I know it's easier said than done. Jo

[Luv2shoppp]

Hello! Diagnosed June 2014. I was started on Meloxicam too. I've been through a few different prescriptions since. I'm now on Enbrel and Celebrex. I feel wonderful now. I feel normal. I felt like there was no hope but now I feel differently with the meds that are finally working for me now. This disease sucks and no one will ever know the magnitude of how painful it can be. I probably wouldn't believe the true extent of it if I hadn't experienced it for myself. All I can day is that there is a better side of the rainbow with the right meds. Good luck

[PJsorefeet]

I was very similar, same diagnosis 2.5yrs ago. I was 29yrs old with a 4yr old and 1yr old. It is hard at the beginning and I used to doubt my symptoms as thought they were in my head. But after 3-6months of the right treatment, you do begin to feel better.

ive had to make changes, alter working patterns, pace myself etc, all of which is VERY frustrating, but after time it isn't.

As i said I'm 2.5yrs in, now don't have swelling, a bit sore but very well managed, what I'm trying to say is, stick with it, it takes time but you will get there!

also ive just started seeing a counsellor for the elusive"acceptance" i would really recommend it, especially being young with a young family, i think it makes it harder.

good luck!

[Candy]

Hi, Know exactly how you feel, and when I found the NRAS site, I cried when reading posts from others that described how I also felt both emotionally and physically. I too have the same diagnosis as you, the tiredness which is common with this arthritis was terrible, the only way I can describe it, is I wanted to just fold myself up and sleep, and that was before I knew anything was wrong. Then came the pain, initially in my neck, then other joints. But once I was seen by rheumatology and put on the right medication, although it took a while, my days of pain and tiredness got better and better. I have been diagnosed 6 years and have the odd blips of pain now and again. Initially I was off sick from work for 6 months but after being given flexible working hours due to arthritis I have never had a day off sick since. Although they may feel like dark days at the moment, with the right medication and time for this to work, you will get back to the person you were. Like Jacki said, this site is fantastic, and when you can't sleep on a night, out pourings on here can be helpful. From rheumatology, they can refer you for physio and to other departments that they feel can help you. Keep in touch on here and let us know how you progress. Candy

[norfolkjo]

This time twelve months ago I was where u are now . I have sero neg psoriatic arthritis and felt like I had fell off a cliff . Ive had an up and down year and I'm much better in mind and a bit better in body . If u want to pm me feel free .. people on here helped me thru .. its time I helped someone else xxx

[magglen]

My consultant told me, only recently, that I was negative. The good news for you is that he also told me that medication works better and quicker if you are negative rather than positive. I have been on Enbrel for seven years and I am very well on it. So hang on in there and I hope they find the right medication for you very soon xx

[magglen]

My consultant told me, only recently, that I was negative. The good news for you is that he also told me that medication works better and quicker if you are negative rather than positive. I have been on Enbrel for seven years and I am very well on it. So hang on in there and I hope they find the right medication for you very soon xx

[stbernhard]

Hello kgk92, As you know by now, you are not alone. We all know that nobody who hasn't experienced fatigue and constant pain finds it very hard to understand what's going on. Because we don't have visible signs of any illness people don't know how to handle it. The advance in treatment and medication is rapid, so there is hope for all of us. The one thing I have learned since getting RA in late 2009 is that you can't let it take over your live. You have to be the boss! It's a hard road to take, but it will pay off in the long run. Be persistent with you GP and RA team to demand as much information as you can. Asked for the best medication available. Be a pain if you have to. There is no shame in breaking down, it happens and if you have just a little help from your family or this forum, you'll get over it. I wish you strength and happiness for the future. All the very best!

[Hidden]

What is the difference between RA negative and RA positive.

How do you know which you have? I have no idea if I am positive or negative!

[Jacki08 in reply to Hidden]

hi--- I'm sero negative which means that my bloods are at a normal level and show no inflammation x

[nomoreheels in reply to Hidden]

Hiya Magnolia25. This is c&p'd from the NRAS website

"What differences are there between people that are seropositive and seronegative?

As well as seropositive patients having a greater likelihood of developing more serious disease, they are also more likely to have extra-articular complications (such as nodules and vasculitis - see individual NRAS articles for more information) than those who are seronegative."

I hope that explains the difference.

[shazbat]

Hello my friend, knowledge is power, it will help you to explain this condition to your family because they need to understand what this disease is. You will hear people say " oh I have RA in my knee" you need to be clear it's an auto immune disease. Also please take comfort from the fact that there are now numerous different treatments coming on the market for this. Some of those are now recognising how debilitating the fatigue is. I was diagnosed over 20 years ago. I have gone through a number of drugs, however that does not worry me because eventually something will gel. Mine is quite stubborn, but please be assured not everyone has my problems, you will hear many different outcomes on here, but many people have found a drug that just works. So give yourself some time to find the right one. Ask every question under the sun, constantly update and inform your family, but more importantly give yourself a break, make sure your family understands you need help through this period, get them to make small changes like lever taps, heavy items in easy accessable cupboards, I promise it all helps. But more importantly write the questions down you want answers too. So when you do have appointments you will remember them and finally please remember everyone is different, there are some scary stories, but not everyone is the same, your immune system is different to other RA Patients so please ask questions but don't frighten yourself to death with some of the experiences as they may not be yours. Good luck.

Shazbat.

[Hidden]

I have had osteoarthritis for 4 years but I was diagnosed with sero neg RD and fibromyalgia in March this year and then gastric reflux and sjorgens in August and now sleep apnea and it has been very hard to come to terms with all these things but especially the RD. It is difficult having to make changes to my life and come to terms with the fact that I cant do what I used to. This year has been horrendous for me as I have been collecting health problems like stamps. I find the fatigue the hardest thing to explain to family and friends and Im not sure they understand yet but I wont give up trying to explain. At first I felt alone and like giving up but then I stumbled upon this site and I must say that this has helped loads. I have learnt more from the lovely people on here than from the health proffessionals who always seem to want to get me out of the way as quickly as possible. I have been sick from work for 6 months now and at the moment I feel I would struggle to continue so my future is not looking rosy. I asked my GP to be referred to pain clinic and eventually got an appointment to join a mindfulness group which is linked to the pain clinic, I have only been to 2 sessions but it does seem this is helping as it is with a group of people in the same situation and who understands what I am going through. I am learning meditation which I never thought would help but it does. I have had several meds but I am sensitive to them so it is trial and error but I hope to find the right one.

I think you need to take your time to find your own way of dealing with it and dont be hard on yourself. One thing I have learnt is that you need to pace yourself and if you need to rest then you do so. Remember you are not alone. Sorry for going on a rant I get carried away. Gentle hugs Joolz.x

[Jeanabelle60]

Hello and welcome.....I have read through all the replys you have had on here. There is loads of really great advice here, asking questions, writing questions down, pacing yourself, work changes etc, etc.

The early days are simply awful, we all understand what your are experiencing. There are no two RD (Rheumatiod Disease is being used more frequently these days as we 'don't' have arthritis, we have an auto immune disease. There will be loads of people who will tell you that ' I have that in my knee!! They don't have what you have.....this will drive you crazy as it does all the rest of us so we use Rheumatiod Disease and tell people that it is an Auto Immune Disease....that usually ends the conversation, in a nice way.) suffers who are the same, we are all different in that what works for one person won't for another.

You don't mention if you have a Rheumy Nurse.....if you don't insist on getting one. Your Consultant usually arranges this. Your nurse will become like a best friend, if she/he is anything like mine. They are your life line inbetween Consultant visits.

In the beginning the main priority is to get your disease and therefor your pain under control. This can happen quickly or like some it can take awhile......there really is no other way around this, it is very much trial and error....as I said no two suffers are the same. But once there is any kind of change in your condition you will be amazed at how well you will feel. Also it needs to be said again as someone else has already said, there are wonderful drugs available now that can bring outstanding results for many, many suffers and you will be one of them....I have no doubt about that....it is only a matter of time. I know when you are bad the thought of some time in the future isn't really what you want to hear but that is just the way it is.....for now.....always look to the future with a positive attitude......the way you are now will come to an end once your drug/drugs are found.

In my own case, I was diagnoised nearly 4 years ago, it did take awhile as I rejected many of the great drugs that work really well for some people. Because of this it did take me nearly two years until the right drug was found for me and since then I have got almost all of my life back again. Its getting to that point that can be tuff, very tuff at times. When you are at this point don't be afraid to ask for all the pain relief you need. I was told my my Rheumy nurse to ask for a particular drug for pain relief and a GP told me I didn't need it. As time went on and I was getting worse and in terrible pain I went to another GP and he gave me exactly what I need right away......get pushy.....its your pain not theirs and tell them that if they don't help you!

I think the advise you got on here is what you need to hear about for now.......horror stories don't help at this stage anyhow. You need to get our family involved for the sake of your own well being. Have them look at this site butyoudontlooksick.com.

You have to be as good to yourself as possible....if your aren't up to doing something, then don't do it and don't feel guilty if you disappoint anyone, they aren't going through what you are experiencing. If you need help, ask for it, from whoever. If your are suffering from fatigue then do whatever it is that 'you' need.....listen to your body, it is telling what you need, not people around you who don't really understand.

In the beginning you will be bewildered, confused, angry, resentful, depressed and a lot more.....this is normal, we were all like that. As your condition improves, and it will, many of these feelings will be greatly reduced or will disappear. You will adapt! Some things may never be the same....you will adapt.....you may be limited in your activities but....you will adapt. Life will go one and you will go on with it.....

As I said the priority now is getting your disease under control, once that happens you will be on here giving all this great advice to the newcomers......

Keep in touch and even if you just want to scream abuse.....do it if it makes you feel better....a good moan/cry/rant can sometimes be just what you need to get through the day/night.

All the very best, Jean.

[Gillian15649]

Now you have been diagnosed and are being treated you are on the way to making life so much better. My GP insinuated it was all in my mind and prescribed painkillers for many months. When eventually I saw my wonderful specialist I was desperate (Pain, tiredness and lack of mobility) and had permanent damage in some joints. 6 years later I am in drug induced remission and can manage my RA quite well. Luckily I retired at 60 and I will not let this awful illness stop me doing the things I want to do.

The people for whom the drugs work well without significant side effects rarely write on theses web sites. Be careful which sites you get info from - I tend to go to NRAS or ArthritisResearchUK for info. NRAS also have a good support system by phone and email. They also have literature you can give friends and family to help them understand - I do think no one really understands unless they have RD. I used to go to NRAS support meetings but decided not to go again after coming home regularly depressed with hearing about all the negative information about drugs etc. I have found that I trust my specialist and Rheumy nurse who are both great and that works for me. Everyone is different and we cope in different ways. I certainly wish this forum had been here when I first found out I had RA.

I hope you soon find drugs which help you and the support you need. Be kind to yourself and rest when you need to.

[kgk92]

Thanks for all the info and advise! I have no doubt that I will eventually be on something that helps, but I've been dealing with this for nearly a decade. I've had spinal fusion four years ago, and hip surgery to repair FAI on my right hip this past March, still need the left hip done. Went through six months of physical therapy. Then my hands swelled up and fingers became terribly painful in August. Once the swelling was obvious in my hands, the RA diagnosis came rather quickly. I've only been to the rheumatologist twice, so we're still getting to know each other! I know things will work out fine, it's just frustrating!