Please Help me.....Im new to all of this.

welshsmiler

Hi everyone, I have so many questions, but Ill start with some basics ones as to not get off on the wrong foot. (sorry about the pun) Only got diagnosed 3 weeks ago, so Im still in a daze. Is it normal for mostly all of your joints to be badly affected? neck, shoulders, wrists, hands fingers, Knees ankles, feet and toes?? I have read some of the posts and most people complain of just a few joins being affected. All I know is Im in agony all of the time, havent slept for nearly 3 months (apart from 2 hours a night when Ive just taken the pain killers) I had my first appointment with the rheumatologilst last week and he gave me an injection in my thigh (sorry, dont know what it was called) .....God its made things worse!! not better, is that normal? do they take time to work? Going back next week for X-rays and Methotrexate. Please please can someone tell me if this is normal? Is this what Ive got to get used to for the rest of my life?

lindalegs

Hi Welshmiller,

Welcome to the Forum but I'm so sorry you're not well at the moment.

From reading your post I'm assuming your have either RA (Rheumatoid Arthritis) or PA (Psoriatic) and not OA (Oesteo). It sounds as though you're having a flare-up at the moment as all your joints hurt and I would think your discovering joints you didn't know you had :roll: )

The injection you had was probably a muscular steroid one, although it sounds as though you haven't responded to it because it should be working by now

Please believe me you won't always feel like this, the disease does settle down and especially once your medication is sorted out. Hopefully the Methotrexate will help, although it does take some time to get into your system. Are you on any anti inflammatories or general pain killers? Some people on here also take sleeping tablets to help them, especially during a flare. Maybe you need to talk to your GP before you see your Consultant to try to get your pain under control.

Hope you start to feel better very soon.

Luv Legs

elnafinn

Hi welshsmiler

Welcome to the forum first of all. You ask as many questions as you wish. It does come as an awful shock once diagnosed and there are quite a few on here that "ache" all over when in flare, or the meds are not working or the pain moves around all the time.

Was it a steroid injection you had? If you have had no relief from it whatsoever, it may well not have been injected exactly in the right spot - a possibility. :roll: sometimes it can take a little time for an injection to work and sometimes immediately. I am surprised if you get no joy from the steroid injection at all.

Once you are on meds that suit you, your life becomes more your own again but you may find that you have to pace yourself and you have good, bad and better days.

I am sure others will be answering your thread. It is a little quiet because of the bank holiday. I have osteoarthritis.

Look after yourself,

Elna

breane

Hi Welshsmiler,Welcome to the forum where you will get a lot of support and advice. I have OA and RA,not sure which you have but I can tell you that arthritis can be in every joint in the body.I have it in the shoulder,hands,wrists,knees and feet and it does move about,worse in one place one day and worse in another joint on another day.I'm still waiting to see the rheumatologist in June so I haven't been prescribed the best pain relief yet.There are times when I have felt very low because of the pain and really not knowing what the future will hold but then I log onto the site and I always get support from other members.I am sure you will find the same.Take care. Breane.x

suncatcher

welcome to the site you will find support and encouragement on this forum any questions just ask away you will get a sympathetic ear on here i think every one above has answered your first questions tho I have Ra and the pain travels round the body no two days are the same. the steroids helped me but they seem to work differantly each time and it takes time for the meds to start working but they do help enourmously. just take one day at a time. all the best joanne

welshsmiler

Hi all,
Thanks for your replies, I really am thankfull.
Yes, Its R.A that I have, and yes I am on diclofenac and co-codamol which I have been taking for about 2 months. I dont feel that they do anything, which Im sure they do (dont want to try not taking them ) Im still working full time in a busy and demanding job, which is not helping Im sure, but I really dont want to give in just yet. I have only just recovered from a hysterectomy in Nov 08 which had alot of complications, (which is when I first got the symptoms) so this on top is just so unfair (not that its fair on anyone) But its so frustrating when the simplest of tasks are nearly impossible Ive now retired for the night as I feel so terrible ( Flu like) and cant walk. So how long does a flare up last for? Or is it because I havent started the proper meds yet?

I will go to my G.P and ask for some sleeping tablets, but Im sure you know what I mean when I say.....I really dont want to take too many meds...normally I wont even take a paracetomol. BUT...I NEED SLEEP.

I think it was a steriod injection...I was in so much pain at the time I didnt take much notice :oops: But Im sure he said it would kick in within 24 hours.

Also, is it normal for the joints to click with a sharp pain that takes your breath away? almost feels like they are dislocated...if that makes sence...then it goes away as fast as it appeared. This is happening more or less every time I move my wrists in a certain position.

livinglegend

welshsmiler wrote:

Hi everyone, I have so many questions, but Ill start with some basics ones as to not get off on the wrong foot. (sorry about the pun) Only got diagnosed 3 weeks ago, so Im still in a daze. Is it normal for mostly all of your joints to be badly affected? neck, shoulders, wrists, hands fingers, Knees ankles, feet and toes?? I have read some of the posts and most people complain of just a few joins being affected. All I know is Im in agony all of the time, havent slept for nearly 3 months (apart from 2 hours a night when Ive just taken the pain killers) I had my first appointment with the rheumatologilst last week and he gave me an injection in my thigh (sorry, dont know what it was called) .....God its made things worse!! not better, is that normal? do they take time to work? Going back next week for X-rays and Methotrexate. Please please can someone tell me if this is normal? Is this what Ive got to get used to for the rest of my life?

Hi welshsmiler

Welcome to the forum. When you are originally diagnosed with RA it can be a painful start. However, when your meds are sorted out, which can take time, then it usually sorts out to a mixture of highs and lows. Flare ups can peak with very little warning, (sounds like you have one now), but other times it is a background general ache and fatigue with particular joint pain if you overdo things. Hopefully the Rheumy will sort things out for you soon.

Joseph 8)

suncatcher

you get some rest you sound like you need it. My joint click too. a flare varies from person to person you cannot know when one will start or end. you will feel more benefir when meds are working. you will find your own way of dealing with things it will take time.
A hot bath will sooth the aches and pains put some lavender in the bath it will help relax you. hope you catch some zzzzs tonight all the best joanne

emmarose33

Hi, sorry to hear you're suffering like this. Do you have RA? Sounds like it. . . if yes, then YES in my experience it is normal for all oints to be affected ( ) and you probably had a steroid injection. I have had lots of these and they did not make any difference. Oral steroids were much more effective.
I am sure the methotrexate will help you. I am supposed to start soon but still breastfeeding my son.
good luck
Emma-Rose

normie

welshsmiler wrote:

Hi everyone, I have so many questions, but Ill start with some basics ones as to not get off on the wrong foot. (sorry about the pun) Only got diagnosed 3 weeks ago, so Im still in a daze. Is it normal for mostly all of your joints to be badly affected? neck, shoulders, wrists, hands fingers, Knees ankles, feet and toes?? I have read some of the posts and most people complain of just a few joins being affected. All I know is Im in agony all of the time, havent slept for nearly 3 months (apart from 2 hours a night when Ive just taken the pain killers) I had my first appointment with the rheumatologilst last week and he gave me an injection in my thigh (sorry, dont know what it was called) .....God its made things worse!! not better, is that normal? do they take time to work? Going back next week for X-rays and Methotrexate. Please please can someone tell me if this is normal? Is this what Ive got to get used to for the rest of my life?

hi welshmiler what you are going through at the moment sounds exactly like i was going through when i first discovered i had Ra i couldnot even sit down on the toilet it was so painful, or get up. Pains eveywhere, but now after getting medication sorted out im 90% better ( of course everyone is diffrent) and i thought that pain was all i had to look forward to for the rest of my life when i was first diagnosed, so hang in there im sure there is something better than what you are going through . take care

jaspercat

Hi, once you start on the right DMARD ie MXT, Sulphasalazine etc, it is possible to go into a remission, I understand that you don't want to take too many drugs but with RA sometimes you need to, as they help to make you feel better. I have had RA for about 14 years and currently take Methotrexate by injection, which suits me better than the tablets, you have alot to get used to, so asks as many questions as you need to love Jaspercatxx

welshsmiler

Thank you to everyone who has replied to my post.

I feel a little better in the knowlege that what Im going through is "normal" to some degree. I just hope that when Im on the meds any future flare up wont last this long...its hell.

I am known in the family as the 1%er! If theres 1% chance of getting something, or something not working....there I am!! I have got a good sense of humour...thank god.

All I can say is Im so glad Ive got a fantastic boss whos been so understanding and patient with all my aches, pains and tears.

So thank you once again for your replies

Sleep time, see you in 2 hours!!!!

xx

charlotte34

Oh dear, how terrible i only got diagnosed with OA on fri just gone and i felt sorry for myself just have the pain in one joint and possibly two other joints so i realy cant imagine how you must be feeling and still maaging to work as well, i take my hat off to you.

I feel ashamed to complain about my pain when you are obviously so much worse off, i cant offer you any advice im sorry i dont knwo anything about RA i can only say i really hope you get on top of this soon x

joyful164

welshsmiler wrote:

Hi everyone, I have so many questions, but Ill start with some basics ones as to not get off on the wrong foot. (sorry about the pun) Only got diagnosed 3 weeks ago, so Im still in a daze. Is it normal for mostly all of your joints to be badly affected? neck, shoulders, wrists, hands fingers, Knees ankles, feet and toes?? I have read some of the posts and most people complain of just a few joins being affected. All I know is Im in agony all of the time, havent slept for nearly 3 months (apart from 2 hours a night when Ive just taken the pain killers) I had my first appointment with the rheumatologilst last week and he gave me an injection in my thigh (sorry, dont know what it was called) .....God its made things worse!! not better, is that normal? do they take time to work? Going back next week for X-rays and Methotrexate. Please please can someone tell me if this is normal? Is this what Ive got to get used to for the rest of my life?

DEAR Welshmiler

Welcome to the forum. I'm pretty new to this forum too. Getting use to having my say and probably reiterating what everyone else has said into the bargain. At the end of the day, in someways we are all in the same boat, but react differently to the same medication, e.g. DMards. The internet will give you all the information on these and what they are for. You may have to push for help with your Rheumatologist or, like mine, get every bit of help open to you albeit slowly.

When I had my first appointment, I also had a steroid injection and wrongly, went straight back to work instead of resting 24 hours. I was afraid to have time off because not everyone understood what I was going thro. "Oh, it's only a few aches and pain, I get that. You just have to get on with it". Well you don't have to just get on with it. You have to learn when you are getting a flare up, you need to know when to rest because if you do not, then you will damage the part that you are having a problem. You will become fatigued, that's part of the game. Once I started getting the Dmards, in my case Methotrexate, then you will most probably get relief, go into remission, but then you will have to start getting use to the side effects. On my second appointment I had another steroid injection, and you will tend to have these from time to time until the DMard gets working.
My GP was reluctant to give me sleeping tablets. In my case the pain was too much and sleeping tablets didn't bring relief for very long.
I tend to take wheaty bags and other kinds of heated things to bed to put against the joints that hurt. Then, I used to find that ice bags can help on muscle tissue that's inflamed and heat on the joint. Difficult during the hot nights though.
At the moment I am trying natural products such as rose hip capsules, turmeric which you can make a tea from, and Black Cherry Juice which you add to drinks. All are antioxidents and are suppose to help arthritis. If you read up on these then you can make up your own mind about them, but I thought I would give them a go. So far I have found them of beneficial help in clearing myself of constipation brought on by the painkillers and other drugs. It seems to have relieved some of the pain I am suffering and that is after 5 days. I went to Holland & Barrett and spoke to an expert there.

We are all different when it comes to the medication. My Rheumatologist Department ran a series of evening seminars over a six week period last year. One week, it was a talk by the Occupational Therapist and the work they do to help you, another week is was a talk on DMards and what your medication can do for you, then there was one by the Podiatrist, which in my case, was very useful. Unfortunately the Pain Clinic couldn't run their talk so never did find out what they could do. I shall find out on the 4th June when I am actually going. It has taken a long time for me to get there.
Another talk was given by Welfare Rights. How to Claim your Blue Badge and DLA. etc. If you have a good Rheumy dept like me you could ask if they do all this. My two nurses are very nice and are there whenever I need them. From what I have learnt on the forum no every NHS area has the same level of support as mine in Kettering.

With regard to the joints feeling as though they are dislocating. I get this quite often especially my knees in bed, the left one locks when I am in any position for too long and again, when sitting I go to get up and my right one feels like it is jumping sideways out of its socket. I spent a whole weekend once in bed because I couldn't put my weight on my legs. Scared me to death. The pain was high on the Rychter Scale I can tell you. My left hip locks and so do the toes on my left foot more than my right foot. When I was at work, I often went a purla when I went to walk from my desk across the floor. I finally retired last year at 64, a year early because I had been away from work for a year and so took early retirement. The pain and fatigue was too much for me to handle. Like you, I had a hystorectomy at 53 and then started getting problems.

I do hope you get all you can from your Rheumy dept. You have to pressurise to get the appointments though and don't be put off. Goodluck. Hope I have been some help. We are all different though and all respond to Dmards differently.

Joyful

welshsmiler

charlotte34 wrote:

Oh dear, how terrible i only got diagnosed with OA on fri just gone and i felt sorry for myself just have the pain in one joint and possibly two other joints so i realy cant imagine how you must be feeling and still maaging to work as well, i take my hat off to you.

I feel ashamed to complain about my pain when you are obviously so much worse off, i cant offer you any advice im sorry i dont knwo anything about RA i can only say i really hope you get on top of this soon x

Charlotte,

Thanks for your post , yes it is hard to work full time at the moment, but I feel I cant give in, in the hope that things will improve once my treatment has started. It does help that my boss is fantastic, anything that I need or want, hes there. Hes changed all the hours for all the staff to fit in around me......what a boss eh!

Dont feel ashamed...your pain is just as upsetting to you........its a hard thing to come to terms with no matter how many joints are effected. all mine are inflamed, but the intence pain is normally only in 2 at any set time, this week its been both shoulders for 2 days (no sleep at all....been back to doctors and hes given more powerful painkillers that make me away with the fairies :shock: but at least I got a few hours sleep) the last few days its been my knees...this week I have found it the hardest, but I havent lost one days work so far Got my appointment with the Rheumatologist on Monday.....Im hoping that Ill know more then about my future.

Keep your chin up, I bumped into a old friend from school yesterday (we are both 41) and shes just recovering from major heart surgery!! that made me think just how lucky I am.
Michelle xx

katat1

Hi welshsmiler,

You have my total sympathy as not so long ago I felt just as you are feeling now. Note the past tense - the pain I was suffering has really improved since I started the meds at the beginning of April so hang in there!
I was waking up stiff and in pain for several weeks and throughout the day I was hobbling around like a 90 year old woman. My feet felt as though all the bones were broken, wrists and hands so painful just picking up a cup was agony, forget about picking up my grandson! Moving around I sounded like a pair of castanets as all the painful joints clicked and shot through with a sharp pain.

I was diagnosed with RA at the beginning of April and was given a steroid injection during my first consultation which started to kick in within 24 hours and almost eliminated the pain over the next few days. I have been told the effects will last for a few months.
In the meantime I am on MTX and hydroxychloroquine which should start working soon as I have been taking them for 6 weeks with no adverse side effects. I have also been prescribed diclofenac slow release tabs and take one in the morning and one in the evening so the effect does not wear off. I find this much better than the regular diclofenac which tends to wear off and allows pain through before you take another one so perhaps you can ask your gp to prescribe the slow release ones?
While you are at it, ask for a vitamin D check as if your levels are low it can make the pain much worse. My levels were low and I was given an injection of Vit D and now take a supplement twice daily.

Overall the combinations of meds I have been given have already had a dramatic affect since April with no flare ups. I experience very little pain, just the occasional twinge, ESR and CRP levels have dropped significantly and I am able to resume a normal existence, including swinging my grandson around and cycling or walking to and from work as I used to do. 2 months ago I would not have thought that possible!

I know it is incredibly hard to remain positive when you are in excruciating pain but it can get a lot better so try not to despair while you wait for that time to come. If something is not working for you go back to your gp and tell them so, don't wait.

Best wishes for better days ahead,

Katat1

welshsmiler wrote:

Hi all,
Thanks for your replies, I really am thankfull.
Yes, Its R.A that I have, and yes I am on diclofenac and co-codamol which I have been taking for about 2 months. I dont feel that they do anything, which Im sure they do (dont want to try not taking them ) Im still working full time in a busy and demanding job, which is not helping Im sure, but I really dont want to give in just yet. I have only just recovered from a hysterectomy in Nov 08 which had alot of complications, (which is when I first got the symptoms) so this on top is just so unfair (not that its fair on anyone) But its so frustrating when the simplest of tasks are nearly impossible Ive now retired for the night as I feel so terrible ( Flu like) and cant walk. So how long does a flare up last for? Or is it because I havent started the proper meds yet?

I will go to my G.P and ask for some sleeping tablets, but Im sure you know what I mean when I say.....I really dont want to take too many meds...normally I wont even take a paracetomol. BUT...I NEED SLEEP.

I think it was a steriod injection...I was in so much pain at the time I didnt take much notice :oops: But Im sure he said it would kick in within 24 hours.

Also, is it normal for the joints to click with a sharp pain that takes your breath away? almost feels like they are dislocated...if that makes sence...then it goes away as fast as it appeared. This is happening more or less every time I move my wrists in a certain position.

woodbon

Hello, I have OA in quite a few places! Its very hard to come to terms with whatever type of arthritis you have and I suppose, any type of cronic illness we may get. :? At the moment you have shock to cope with as well.

I think the hardest part for you and the doctors treating you is to find the best medication. What works well for one patient does the next no good at all, but, if you can be patient they will try all the things they have in their bag of tricks, until they find the best treatment for you. Their is light at the end of the tunnel! :shock:

Also, I must admit for me its hard to get used to having things I can no longer do, or finding different ways to do things. With that and the pain, I do admit to being grumpy sometimes and snapping at my husband or whoever, for no really good reason! :oops: I try and arrange appointments so that my husband can come with me, so we can go through this together. That helps him to put up with me when I'm feeling grummpy :oops: :oops: .

Sorry, I've gone on quite a lot, hope you let us all know how things are going and ask for any help you need. Love Sue

joyful164

Hi there

You are so lucky to have an understanding boss, I hope the rest of the staff pull their weight. You will have to give them some leaflets etc so that they can read and understand what you are going through. Never know, they will probably be in the same boat themselves.

After my first rheumy appointment came through and I had my first steroid injection, I was referred to various clinics including podiatry, because my feet were in such a bad state, Occuptional health dept, where they started working on my hands which were badly affected.
The night splints they made were incredible and help take the weight off your arms, wrists and hands during the night. Stops your hands going into a claw. I bought good shoes from padders which is just up the road where I live and took these along to the podiatrist. Had special insoles made. My right foot is beginning to turn outwards and is a whole inch fatter than the left. Padders were very good and sorted out a size 6 for the left foot and 6 1/2 forthe right. Seems to be doing the trick and whilst I was getting painful flare ups in my feet the special measures helped to keep me mobile. Luckily, the problems with my feet seem to have gone for now.

Naturally all this mean't time off for appointments. I use to have about 3or 4 a week for awhile.

You will have to make sure your work station is going to be ok for you. Have a word with your boss and suggest you contact the Job Centre and arrange for an assessment through 'Access to work'. They make useful suggestions and if there is any expenditure for special chairs and equipment, then they will meet half the cost, with your employer meeting the other half.

I do hope you start to get things rolling with your help and we are all here to help in any way we can.

joyful