Please can you give me advice I desperately need it.

Felpaterson

Hi there,

So I am 28 years old and I have two children aged 1 and 3. I did gymnastics for 10 years and then stoppe staged 15. From then on I have have had joint pain in my back and hips. I learnt to live with this. Bt when I was 6 mints pregnant twist my 1 st daughter I started having very ba foot pain in both feet. A burning feelin and like a pebble in my shoes. I a,so have very very bad hip pain. And wrist pain and back pain. After the birth of my daughter I was diagnosed with hypothyroid and and medication for that now and forever. So afte that I moved o Malaysia and my pains went down a lot and the heat was amazing, alth my feet were still dry sore and my toes. But then I fell ore an again and towards the end of that pregnancy my wrists started to hurt and also my right shoulder. This is me now bein in pain for a long time. Both wrists, I have Carple tunnel syndrom, I have very sore, burnin feet, my hips are sore, my right shoulder is complee agony. My left is starting to hurt, I can't hold a pen I have not stregh in my hands, my back locks up so I sleep sitting up every night and have done for 3 years now. My ellbows aw starting to ach and my knees hurt when I sit for to long. I do not drink or smoke, I am 28 and I weigh 9stone. Mediaion I am on is steriods 20mgs daily (have been on them for 6 omonths) thyroxine, co- dydramol, dyhrocodine, naproxen. I'm no sure how much more pain I can take. All these tables and I still have pain. My shoulder is the ose right now and my wrists. I have my 1st rhumatology appointment on friday and I am just ready to cry I am that nervous. My blood work so a has all come back clear 6 months ago. So I am just so worried the dr is going to tell me to just go home and I'm making it all up. I'm at the point where I'm struggling to put a bobble in my daughters hair cos my hands don't work. Any more, I have also had to give up my job as a nurse as I just am hold anything and I'm in so much pain. Please can u give me any adivce at all!? I have never written on this kind of thing before, but I'm so worri about what the dr will say on friday. I need help. So badly. Thank you .sorry about the mistakes but I am n an iPad which is the worst thing possible for me as holding it is a nightmare with my hands, so bare with me, sorry again x

stickywicket

Hello there and welcome to the forum. I’m sorry you’re in so much pain despite all the medication and I do hope the rheumatologist will be able to help. I’m sure he/she won’t think you’re making it up. Why should they?

My advice would be to just explain how it is for you. If you make notes beforehand it will be easier to remember everything and then take those notes in with you. It’s always best to take a family member or friend to appointment if you can because then there are two of you to remember all that was said.

No-one can predict what the rheumatologist will say but, if they feel it is an auto-immune form of arthritis, you will probably be started on some disease modifying medication.

It might be worth asking about attending a Pain Clinic as you are in a lot of pain despite steroids, anti-inflammatories and two lots of strong pain relief. Has no-one ever suggested a rheumatologist before now? That’s a long time to be in so much pain and having to sleep sitting up.

Please just tell it how it is and don’t worry about whether or not you will be believed. And then tell us how you got on. I do hope you will get some answers and some help.

There is absolutely no need to apologise for posting here. That's what we're here for and we'll always try to help.

skezier

hi Felpaterson,

Welcome to the forum and I am sorry your having so much pain.. its not a good companion is it?

I have a fair bit of pain relief now a days but before I found some that suit me. As well as the tablets there are self hep ways to help manage the pain and they might be worth you looking at? There is a bit about it on the site up the top in the about arthritis section.

There is a lot of good info there.

Its horrible the way it trashes life but there is hope that with the right medication life can be as full and as rewarding as it was.... just it takes a bit of time to find the right meds and I think you should maybe ask to be seen again and have a chat about a different type of pain killer, maybe stronger or maybe a different one the same strength.

I don't know if you can get a bit of rest up time for you during the day? It can help a bit as well.

It sounds like you are having a flare and it honestly does need some help from the rumo or even your gp as the tablets you are one are not working and they can change them. Its a -I don't remember the word but its kinda like system- that doctors go through with the tablets but they need to be told they are not helping and they should either change them or adjust the dose.

I wish so much you didn't have it and know that though I am old now I got the bone stuff in my teens but though it changed my life it hasn't stopped me having one so please remember that.

Hang in there and talk to your rumo or gp and get them to try something else till they find what suits and works for you. Nice to meet you. Cris x

Felpaterson

Thank you so much for your reply, I'm sorry my typing so so bad, my hands really are very poor just now. It is like frost bite in them, like I have been playing in the snow and just taken my wooly gloves off. Thank you for your advice, I feel any and all advice for me just now is great I do feel like I am having a flare up consantly right now as I never seem to get a break from the pain. My mother has artheritus ( I dnt remember the name for it) in her spine and has dne since she as a little girl, she is in pain every day too as she refusses to take pain killers, my Nanna has RA and she is very crippled with it in the hands and hips. It's very noticeable in her poorly hands.

I hate being on prednisalone, it has made me bloated and headaches, gained Half a tone in 6 months (which was over my wedding) and I'm just feeling rather crap still and in pain so I just don't see how they are helping. I am also bruising like mad. I mean I have huge hard bruises all over my body and I cant even remember banging anything. I am off to the dr this morning to disuse them as she says they are not normal. So I will see then.

I guess the thing I am mostly worried about on friday is that the dr might not do anything, I am so scared he will not put me on any drugs. I have a husband offshore for 2 months a time and 2 very young children, I need it controlled and so I an go on hitting my life. My shoulder that s giving me the mot pain right now feels like there is a knife in it. And it's being turned. I have been in that much pain during the night hint honestly, given the chance I would cut it off, I honestly would just rather be with out it. I know this sounds very dramatic, but it's honestly how I feel. It's hard for my husband to understand but he does do a good job, he is amazing and his sin goal in life is to make me happy and our children. I am very lucky.

So with all the information I have given you, my dr seems t think it is RA. Do you agree with him!? And could u possibly tell me what to expect for my first rhumatology appointment!?

I am so ld I have found you guys. I'm in a bit of a mess and need some people who I can alk to who know the pain I'm in.

Thank you xxx

dreamdaisy

Hello, it's nice to meet you and I'm pleased you have found us. There is evidence of a genetic link with RA and that certainly seems to be the case with your family. RA can come in two forms, sero-positive (where rheumatoid factor is present in the blood) and sero-negative (when it isn't). Diagnosing an inflammatory arthritis is a far from exact science - it took me a good few years to receive my correct label but that didnt' change the treatment when it happened. As for the pain, well, that is a factor of arthritis and finding the right type of pain relief can help - but don't expect it all to go because it doesn't. 'Pain killer' is a misnomer as the pain isn't killed, just dulled for a while before it comes back, but if you take sufficient relief you can keep it under some control.

As Sticky said, make a list of what is happening with you and the effect it is all having on your life. Stress the familial link - any rheumatologist worth their salt will take that into account. Be prepared for further blood tests, maybe Xrays and please let us know how you get on. I wish you well. DD

barbara12

Hi and welcome to the forum
I am a lot older at 62, but like you was very fit, it was at the gym I noticed changes going on.
You will be worried about your appointment , that is only natural, like you my bloods have come back clear, but then others have been raised, so dont think they are going to send you away has though nothing is wrong.
Like the others have said make a list of questions you have, but also a list of anything you can remember to do with and when it all started, some of the questions I got ..any hair loss, any rashes, any swellings, what joints are effected, and do they get warm to touch .
I do hope you get the answers you want, and please let us know how you get on x

bubbadog

Hi felpaterson, Firstly welcome to the forum, you have made the 1st step, we on here all understand what your going through physically and emotionally so you don't need to keep oppologising! If you want us in your pockets for friday for support just ask for 'pocket duties'. It's our way of supporting you through your appt, as we all know what hospital & G.P appts are like! We all support each other on AC and if you want any help with any questions you have answered just ask us and we will do our best to answer anything. Welcome again to AC forum you made the right choice to join the site!

stickywicket

Felpaterson wrote:

I guess the thing I am mostly worried about on friday is that the dr might not do anything, I am so scared he will not put me on any drugs.

I think that's very unlikely. Do emphasise that there is RA in the family. I think you've been very unlucky, though, that 20mgs pred didn't help. I'd be climbing mountains on that dose

The meds given for auto-immune versions of arthritis can take some weeks to kick in and often there's a bit of juggling about with doses and different ones to see which works for you so, assuming that's what you have, there's unlikely to be a quick fix. I do think you will be very glad you went though.

Felpaterson

Hi to you all, thank you for your replays I could cry I am so happy to feel I have some support from people who know what I am feeling like, I must say it is great to have found you all so today I went to my GP rears I the amount of bruising I have all oer my body and she has taken a FBC and said If I want to I can start decreasing my prednisalone. I must admit the steroids were a god sent to begin with but not now, I don't feel like they even work now. I was very stupid and during my honeymoon rebelled and stopped taking all my meds over night. Well, that was stupid! I felt awful, and with in a week I had a huge rash on both kes and I was in a lot of pain. So stared the 20mgs daily again acording to my GP and I stared to feel better again , but the pain in my shoulder has not gone. Can I ask is it possible to even have RA in your spine!? I am very new to all this and have so many questions. I am going to get a list together for Friday of questions and also my pains and medication I am on and tried, I'm so worried I forget stuff so I think writing it down might help. Although saying that hold a pen is asker said than done right now, so I might type it instead.

I have looked up medication a lot and seems methotrexate (tablet and injection) seem to be common? As well as 2 other medications. I do realise it will take time for the drugs to work but I will be happy knowing that it is doing something specific for me and not just a general steroid.

Things I find most difficult are-

Ironing, hoovering, changing gear, wiping tops ( or anything with the same motion) putting bobbles in my girls hair, driving is very sore at times, also writing, typing, sewing. Somedays I look present and have a little bit of a waddle cos my hips are so sore and stiff.

Thank god for my children as if I didn't have them and I actually did have 5 minutes to sit down, I don't think I would get back up!

Can I ask, do you think I might get started on methotrexate and if I do will it be tablet or injection form? Would I have the choice!? And also wil I be followed up? Or would It be another 6 months waiting of an appointment to see them!?

Felpaterson

P.s yes please on Friday I would love you on "pocket duties" it would feel lovely knowing that you are there in spirit my husband is offshore just now and my family all live all over the world ( I live in Scotland, Aberdeen), I do talk to my daughter but only so much my 3 year old can help haha! She does however rub my hands and tries to make them better, bless her.

Thank you lovely people

stickywicket

Yes, meth is one of the most common starter meds. Others are hydroxychloroquine and sulphasalazine. Sometimes they are given together. I've been on meth and hydroxy for over ten years now and they work well for me. Usually it's tablets to begin with and jabs only if there's a problem. I've never needed to go onto the jabs.

You might find it useful to have a look at the 'Simple Ideas....' thread at the top of this page. It's full of useful advice about how we do things differently.

Good luck with the appointment. I'm ready willing and able for pocket duties.

dreamdaisy

I can only answer from my own experience. If you begin meth then it's more than likely it will be in tablet form, I began with sulphasalazine (and bruised heavily) then meth was added. Over the years I've tried various combinations of meds but one thing I still do is bruise. I don't notice it now, my bloods are fine and they are what count. You will need to get your bloods done on a very regular basis, this monitoring is very important and you will need to be conscientious about it.

Can you get RA in your spine? I reckon if it's a joint you can get arthritis in it - jaw, toes, wrists, ankles, elbows you name it it can be affected but no-one knows how their arthritis will develop. As for the things you are struggling with, well, I cannot really help as I have adapted so much over the years that I can't remember doing things with ease. :roll: What I do try now is to stop when I think I can do more as that only leads to trouble.

I won't be on the forum on Friday but I promise I'll be thinking of you and I look forward to an update when you are done and dusted. Take care. DD

barbara12

Hi Felpaterson again
That is the best thing about being on this forum, talking to people that understand some of what you are going through, it is such a big help, and save the ears of our family's...
You take care x

Tubby

All I can say is - keep visiting here and you will feel, at very least, less alone. I am on Methotrexate and Sulphasalazine (plus pain killers etc) and think they are only having a marginal effect but there are lots of options so keep checking in with the Forum. It helps you ask good questions when you are with the Medics (who are usually brilliant) and know there are others out there that understand.

arfaitis

Hello Felpaterson, sorry to hear about your condition, my suggestion is, if you are not happy with your GP, ask him to refer you to a Rheumatology department at the hospital.
Just to give you an idea, I have 5 doctors at our surgery, and only one of them is trained in rheumatology, and I always ask for him if I have a rheumatology problem, another for my heart, but if I am desperate I go to anybody, but if I am not happy I see another.
Hope this helps you, remember there are as many as 100 types of arthritic type conditions, and we are not all the same.
Good luck. keep us posted.

Arfa

Felpaterson

arfaitis wrote:

Hello Felpaterson, sorry to hear about your condition, my suggestion is, if you are not happy with your GP, ask him to refer you to a Rheumatology department at the hospital.
Just to give you an idea, I have 5 doctors at our surgery, and only one of them is trained in rheumatology, and I always ask for him if I have a rheumatology problem, another for my heart, but if I am desperate I go to anybody, but if I am not happy I see another.
Hope this helps you, remember there are as many as 100 types of arthritic type conditions, and we are not all the same.
Good luck. keep us posted.

Arfa

Hi arfaitis,

I have been referred to Rhumatology and I have been waiting 6 months for my appointment. I have my appointment on Friday and it can't be here any sooner! Thank you for your advice, I have done so much research into artheritus and my pains etc, and I do feel it is RA as well as my GP feels it is this too. I am getting ready for my appointment with lots of questions and I will be going with as much information as I can.

Xx

arfaitis

Sorry I missed the hospital appointment, but I feel 6 months is too long, and a phone call to your hospital consultant might just get you there quicker.
Good luck.