Rheumathoid Arthritis > HELP!

angs77

Hi All

For a few years now, I have been suffering with wrist pains and shoulder pains. The GP surgery I used to attend injected steroids directly into the joint for pretty much immediate pain relief but never treated the cause. I used to get these shots about twice a year, and in the beginning, I thought they were great.

A few months ago, my family and I changed medical practice and five weeks ago I developed immense pains in just about every joint in my body.

At first, I attended the doctor in my University who was very quick to point out that the symptoms seemed to be that of RA or PMR (polymyalgia rheumatica) and then done a lot of blood tests and sent me home for a week with strong pain killers. That was the first Tuesday. On Thursday she asked me to come back and confirmed her suspicions - RA.

I then traveled home to my own county, that was a scary 150km drive as I was in so much pain, I couldn't grasp the steering wheel properly, but took my time and made it in one piece.

On Monday of week two, I developed tiny spots on my arms, about five of them and went to my own GP instead of going to college. He told me I had chicken pox without further examination and prescribed paracetmol and told me to go to bed for the rest of the week. The pain had become unbearable by Wens', so I decided to go to a different GP in the same practice.

He was very quick run a series of bloods on me, take my family history and examine the movement in my joints, and this time he actually read all the files from the doctor in my University and started me on a cocktail of anti-inflammatory drugs an antibiotics and pain killers.

This was great and almost cured the pain. At the end of week four, the pain started to creep back, we are now in week five and I am back in the same pain.

As I type this I could scream at every key stroke (and I am a typist). I am trying my best to study for assessments, but the pain of holding a biro is too much.

I am now on a course of steroids and pain relief and I am starting to wonder if this pain will ever ease up and let me go back to Uni to finish my masters…

Can anyone offer me advise on how to cope with the pain of RA. Is their any gels or ointments that help? or is it a case of wait for doctors to find the right medication?

Cheers

Daisy M

You need to see a rheumatologist for a diagnosis, your gp can guess but you need proper confirmation. If you are very bad present yourself to casualty which will speed up the process of been seen.
Yes you can get gels, difene, brufen ect they work well but you would need to take them in cojunction with painrelief. Have you spoken to your gp about the pain relief ladder if not do this and find which meds you can take for pain relief. For example I am on antiinflamatories (Arcoxia) the max daily does, when I am bad I top up with meptid and if needs be Panadol. You need to find a combination that will give pain relief and do not contain the same ingredient and cause you to over dose. One bit of advice I will give you is even if you are not in pain when your meds are due take them, they build up in your system to provide pain relief missing one can set you back.

angs77

OK, so it been a while since I've had a chance to check this thread. I ended up being admitted to hospital about a month ago with the same intense pains and stiffness all over my body - walking (knees/ankles/toes), writing, driving (wrists, fingers, elbows, shoulders), - its all just one big nightmare!!

They confirmed my suspicions after a series of tests, I am suffering from Rheumatoid Arthritis and its widespread.

As a result, I have chosen to defer the remainder of my Masters until 2014, firstly to relieve some of the obvious stress levels that come with it and secondly to make sure I have time to deal with work load/time commitment required to complete the course.

The meds they have given me are great when they decide to co-operate with whatever my body is experiencing, but they are steroids and only work in doses above 20mg's and I have been told, they are not a long term solution.

The reumathologist has tried 'tapering' me off them, but every time he and my GP attempt it, I literally cease up - the pain becomes too much in my fingers/wrists/shoulders/hips and knees.

I am considering alternative therapy's like acupuncture - yes I know eleven or so weeks into it, it is probably too early to even be thinking that way, but I have six exams coming in just over a month, and will need the use of my hands if nothing else.

I know there are no miracle cures for it, but has anyone tried alternative therapy's or is there something I should be pushing the specialist for?!

Any, and all feedback is welcome...

35 and in agony!

Wyldwood

angs77 you sound like you have been through hell.
I'm not qualified to give medical advice but, from personal experience, see if you can get a hold of a book called Treating (or Curing) Arthritis the Drug Free Way by Margaret Hill. It's a fairly old book written by a nurse who suffered badly with arthritis and found that eliminating certain foods made things better. It won't cure you and you will still need medication but it certainly helps relieve some of the inflammation. I have used this diet and it eases some of the aches and pains though mine were nowhere as severe as yours.
Try your local library.

angs77

Thanks for that, will have a peek online and see if I can locate a copy.

emmeygirl

I was diagnosed with RA last August. My GP was fantastic, and referred me straight to the specialist rheumatology department of our local hospital. Whilst there they also diagnosed carpal tunnel syndrome, so double the agony (and I can empathise with the OP).

I was immediately put on NSAIDS (methotrexate initially) and was warned it would take 3-6 months to notice any benefit. In the meantime I was given depo steroidal injections (which helped temporarily to ease the inflammation) in conjunction with hydrotherapy and warm wax hand baths, both of which gave temporary relief whilst I was undertaking the treatments (but when you're in constant pain even temporary relief is better than nothing in my opinion)

Three months ago I was prescribed another type of nsaids in addition to the methotrexate (because I was having more or less constant flare-ups). I am still waiting for these to 'kick in'. I was also under an Occupational Therapist who, in addition to giving advice on living aids also made me resting and working splints, to help reduce pressure on the joints in my hands and wrists both whilst I was active and sleeping.

As you can see it has been a long journey of treatments and therapies since I was first seen by my GP. Although RA cannot be cured I have continuous support from the rheumatologist, and nurses at the specialist centre, and have access to the warm treatment therapies, physiotherapists and occupational therapist.
OP, if you have not been offered these treatments/access to these therapies I would advise that you press your GP for referals. Individually they may not be the solution, but in combination they do at least give some relief.

Best of luck....xx

jessiejam

Hi there, I feel your pain

Was diagnosed with Arthritis back in 1997. Sero-negative. In other words the rheumatoid factor was negative. So plodded along with the usual treatments for years. Anti-inflammatorys salazopyrin pain killers etc. They even tried a malairia drug on me called plaquenil!. I was never pain free and just got used to living with it. My knee was mostly affected then it started in my foot, had a few ops to remove knuckles etc.

Anyway back in July 2010 I started to get dry skin patches under my feet and on my forearms and shins. Showed these to the consultant and they diagnosed psoriatic arthritis. 13 years later!. They then prescribed me methotrexate. Went up to the highest dose and this cleared the dry skin but did nothing for the pain.

2011 on a repeat visit to the doc, I insisted something else was done and they started me on a drug called Simponi. 1 injection once per month. Like a pen that diabetics use. 3 weeks after this I was pain free. Just finished weaning myself off the methotrexate back in March and am doing good. 99% pain free. Its an expensive drug so they are slow to give it out. Close on €1,500 per month.

I get my blood checked every 2 months and have had increased lymphocytes that are being investigated at the moment, have an appt tomorrow with the haematologist for results. Hoping all is ok. Not sure about long term side effects but have to live in the now and start living again. Pain free.

Keep pushing the doc is all i will say. I did and am doing good. Hoping the blood results i get tomorrow will be ok

angs77

HI

sorry for the late reply.

I was back in the hospital with the nurse & consultant about three/four weeks ago and after arguing with them over the pain and condition that six months of steroids have left me in, they have agreed to start me on 'enbrel' (self inject medication), with a view to getting me of the steriods and they are hoping it will work well with my weekly dose of Methotrexate.

The Methotrexade isn't a great drug for this condition I find, simply because all I want to do is sleep all day Tuesday when I take it, and like yourself, I'm sero-negative as well which makes it feel like a constant fight to get a consultant to believe the pain this condition can cause.

Now in saying that Enbrel as approved for me, I was told that I would be starting Enbrel three weeks ago after all the routine blood results came back. My pharmacist has rang me and said the prescription has arrived and they have the injections in stock for me to collect, but the Enbrel nurse has yet to contact me... its a vicious circle... I have contacted the hospital about it - but got fobbed off with a phone number to ring, so may let fly at someone over the phone this week in order to get the ball rolling.

The only plus so far for me is, despite being given no real choice but to defer the second half of my masters, I have been allowed to do my project/thesis this summer so it is keeping my mind occupied.

Hope your results went your way, and thanks for the posts.

angs77

angs77 wrote: »

HI

sorry for the late reply.

I was back in the hospital with the nurse & consultant about three/four weeks ago and after arguing with them over the pain and condition that six months of steroids have left me in, they have agreed to start me on 'enbrel' (self inject medication), with a view to getting me of the steriods and they are hoping it will work well with my weekly dose of Methotrexate.

The Methotrexade isn't a great drug for this condition I find, simply because all I want to do is sleep all day Tuesday when I take it, and like yourself, I'm sero-negative as well which makes it feel like a constant fight to get a consultant to believe the pain this condition can cause.

Now in saying that Enbrel as approved for me, I was told that I would be starting Enbrel three weeks ago after all the routine blood results came back. My pharmacist has rang me and said the prescription has arrived and they have the injections in stock for me to collect, but the Enbrel nurse has yet to contact me... its a vicious circle... I have contacted the hospital about it - but got fobbed off with a phone number to ring, so may let fly at someone over the phone this week in order to get the ball rolling.

The only plus so far for me is, despite being given no real choice but to defer the second half of my masters, I have been allowed to do my project/thesis this summer so it is keeping my mind occupied.

Hope your results went your way, and thanks for the posts.

Sorry for the very late reply......
I was in agony for about five years with visits to an R.A clinic. They never found anything conclusive..... I was looking for answers everywhere. The pain was constant and debilitating. Exhaustion beyond belief. Every bone in my body screamed at me. I was eating anti Inflams and painkillers like smarties even though I knew they would not help long term. I was always very active and sporty. I gave up on every getting an answer....... I tried diet as I had put on a lot of weight too from being able to do very little of a physical nature, viscious circle and all that. I tried a very severe form of fasting for two weeks and then ate pretty normally. Lost lots of weight and I began to look very closley and exactly what I was eating. Cut out all citrus fruit and took Vit C pills instead. Drank honey and apple cider vinegar daily and also increased daily water intake. Never used to eat much fried food anyway so I just cut out choc's and crisps and even started growing fresh veg in the garden as well. I finally began to take a look at myself and realised that usually I never put myself first and didn't look out for myself properly. I made a mental not to say to myself "F&^k everyone, F$%k the world, F$%k my job....I have to look after number one. Worry about absoultly nothing and concentrate on little steps just for me.... I sincerely believe that somewhere within the everyday western diet lies a poison just waiting for the right biological conditions to present themselves and pounce on the immune system. Mind you, I had also taken a fair bit of different meds and innoculations for travel however I just gave up on looking for answers and concentrated on me, me, me......
Food might not be the answer but it sure won't harm to be using the right fuel. After all, no one would dream of putting diesel into a petrol car.... Right now it seems as most of the inflammation has finally eased off and I am just left with O.A. from "bouncing" around most my life.........Still use Arthrotec daily but it's a far cry from what I used to gobble down daily pill wise...

Anyway I do know exactly how you feel and that you feel there will never be an end to the incessant pain and fatigue. Sometimes it feels hopless and if life itself justs want to torture you....

Believe it will end and you will get there one way or another eventually.
Nothing lasts forever...........

Best wish's for you if you get to read this thread and best wish's to anyone else in a predicament much as yours.....

Remember...... me,me,me.... You have to put yourself firts now. If you don't look after yourself no one else will. YOU are the most important person in the world right now........

Adios Amigo.