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Fear and Loathing in Birmingham Options
Mairead-H
#1 Posted : Saturday, May 29, 2010 10:04:23 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 5/26/2010
Posts: 128
Location: Birmingham
I've had an interesting life, having always been one to stand out from the crowd and do things different. Sadly my body feels the same way and decided to hit me with swollen, painful knees around 1996. A private consultant told me it was arthritis but he didn't want to specify "which one" because should he be wrong the insurance wouldn't cover any further treatment. He suspected osteoarthritis and prescribed huge doses of ibuprofen.

After reading what such huge doses could do (800mg x 4 daily) I did some research and cut out nightshade and acididic foods. Lo! within a month the agonising, burning, grinding pain had gone and I could walk again without crying.

Three years later I found myself walking in the middle of the road with no idea how I got there. It wasn't a brain tumour, I was reassured after numerous similar episodes, vertigo and severe headaches and blurred vision forced me to seek a consultant. It's probably Meniere's Disease, I was told. "Here's a leaflet. Go and see the Tinnitus clinic and come back if it gets worse." In 2003 it did and I revisited the consultant only to be told I was a hypochondriac and to quite simply bugger off and stop wasting his time.

By then I'd already suffered for a while with what I thought was osteo in the wrists and fingers but a career change with less typing seemed to resolve that issue and I promptly forgot about it until 2008 when I woke up one morning in Barcelona in so much agony I thought I'd dislocated a toe. By the time I got back to blighty it had disappeared apart from the odd twinge when I positioned my feet awkwardly. It returned six months later but by the time I got to the GP the swelling and redness had disappeared. I was reassured it wasn't gout and for the first time I began to have a nagging suspicion it could be rheumatoid arthritis.

In 2009 severe pain and swelling developed in my thumbs and forefingers on a trip to London. By now I was beginning to wonder why I only got ill on holiday. I was already using a walking stick for the Meniere's I didn't have so walking was very, very difficult. The pain promptly disappeared the second I returned home and reappeared a month later on a research trip to Belfast. "You can fry those eggs on my hands if you like," I said to the waitress as we ordered our Belfast fry. Such was the agony I had to ask my husband to cut my food as I was unable to use a knife and fork.

Finally I sought medical help at around the same time I woke up with severe pain (but no heat or swelling) in my right shoulder. My GP was on holiday so I saw a locum, a bone surgeon apparently, who was an expert in 'these things' who told me I had a frozen shoulder and I was too young to have arthritis and there was no sign of it anyway. Two weeks later a return visit to my very capable GP resulted in me being taken off the toxic painkillers I'd been prescribed to a softer analgesic and a rapid appointment with a rheumatologist and physiotherapist.

To cut a long story short, after some argy bargy about whether I had psioratic arthritis or not I was treated with steroids and the various forms of rheumatoid arthritis were discussed. From then until November my hands went up and down like a balloon at a kids' party until finally the swelling and stiffness was bad enough to get me a diagnosis of seronegative inflammatory arthritis. It had literally taken less than 6 months for the diagnosis so I understand I've been very lucky.

I also realise I've been very typical in taking 10 years to get a diagnosis of Meniere's Disease. The tests I had last year confirmed it. Deterioration of my inner ear on the right and it's in the left as well. So yay for me, I get diagnoses of two chronic, disabling diseases within three months of each other. Good job I'm tough skinned.

But I digress. A quick experiment in Sulfasalazine resulted in me nearly losing my skin to a nasty dose of Stevens-Johnson syndrome and some urgent tests to see if my liver/kidneys were damaged. Apparently they're not but I had months of problems with my skin which still recurrs from time to time and an overnight inability to hold my liquor which was never a problem before.

I refused further medication other than steroids and analgesics after that until earlier this year things deteriorated and I realised I had no damn choice.

I'm now on my fourth week of MXT and currently on 10mg after a starter dose for two weeks at 7.5mg. I'm up to 12.5mg next week for two weeks and then - well, you know the story.

I look back now and begin to see there's a definite pattern with all these niggling aches, pains, swelling, "RSI" and other strange ailments I've suffered since 1996. I also believe the Meniere's Disease results from the same autoimmune disorder that's now nibbling away at my joints and in fact that was probably the first symptom. One of its causes can be rheumatoid arthritis so it seems to make sense.

This blog will help me to keep my sanity as I enter the hurdy gurdy world of methotrexate and God knows what else I need to do to control this betrayal by my immune system.

So far nothing. No sickness, nausea on the second week only and nothing since, no headaches, no more tiredness than I'm used to. Maybe it's early days yet but I can report my hands have actually gotten worse which is interesting. Ho hum.

This is Maggie, last survivor of the Sulfasalazine signing off ....

(I'm an insufferable sci-fi geek by the way)
Mairead-H
#2 Posted : Monday, May 31, 2010 1:05:31 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 5/26/2010
Posts: 128
Location: Birmingham
The pain I can deal with. The stiffness I can deal with. The emotions and other people's reactions I can't.

I'm sick of the rollercoaster of worry, anxiety and fear. I feel fine for a week - everything's under control. I can cope, the hell with it. The following week I can't sleep with the terror of it all.

I feel like Michael Corleone in the Godfather Part 3. "Just when I thought I got out they pull me back in." Just when I thought I'd got over it and was dealing with it I'm yanked back into the dark underworld of crippling fear and loathing. How bad will it get? Will I have to stop work? How sick will the drugs make me? What are they doing to my body? What if they don't work? How will I pay the bills/mortgage/loans? What will happen when I'm old? Who'll look after me? I have no children.

People try to help. I wish they'd get lost. Idiots, they have no understanding.

I raise money for charity by dressing up as movie/tv/comic/game characters and entertaining the public. I'm in three clubs that do this around the country. I pull out of an event because I'm too tired. They blame the heat. I tell them I don't have the strength/energy/humour any more to run around for six hours. They tell me I can still go and help out anyway. They can't see that even sitting and minding a prop stand for six hours is physically and mentally unachievable with this disease. They want me to go to Hong Kong. I tell them I'm still in the trial period of medications and can't plan anything for at least another two months. They tell me to skip a week.

Who can win against this barrage of ignorance?

I tell them I have a disease which is destroying my joints and may have already started on my organs ten years ago, starting with my inner ears. I ask them to imagine doing everything with broken hands. I tell them the pain has been so bad that I've seriously considered taking a meat cleaver to my hands to find relief. "I've got a bit of that in my elbow," they tell me. No you don't, I tell them, you really don't.

I think about the people who have far worse, who've not given up and have done far more: people in wheelchairs circling the world, people with no legs climbing mountains, blind people swimming the channel. Their strength feeds my guilt. Whatever, I'll curl up in a ball and wallow in my own misery.

Maybe tomorrow will be a better day.
AnnieB
#3 Posted : Monday, May 31, 2010 5:54:14 PM Quote
Rank: Advanced Member

Groups: Registered

Joined: 5/19/2010
Posts: 384
Hi Maggie

Sorry you are feeling so down at the moment, but unless you have experienced the feeling of broken hands I really don't believe people will understand what you are going through and to be honest I don't expect them to, I was only diagnosed recently but the painful hands started last July and I also told people that the pain was so bad that at times I wanted to chop of my fingers, I was told it was a trapped nerve by the first doctor I saw.

Saying that I was brought up quite harsly, not alot of sympathy as a child with regards to illness or emotions, I still havn't told my parents about my RA because I don't feel able to discuss it with them, and I would find it hard to receive any sympathy from them. I have told my husband not to ask me everyday how I am, I have told him that I will tell him if I am unable to cope, and he can see when I'm struggling.

I wouldn't say its ignorance but people just don't understand, to be honest if someone told me before I had this, that they had RA I would have thought it was a few aches and pains, I would suggest that people who you really want to understand what you are going through, people close to you, give them the booklet about RA so they can have a good read.

Try not to worry to much about the future, I to have worried alot over the past few weeks about what will happen to me, but the advice I have received on here from people who have lived with this awful disease for years has really helped. I now feel lucky as a person who has been fit and healthy all her life not have caught it until I was 50.

I'm sure you will have better days. Anne x
Mairead-H
#4 Posted : Monday, May 31, 2010 7:40:40 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 5/26/2010
Posts: 128
Location: Birmingham
Same here. There wasn't (and still is) much sympathy in my family for anyone who's ill. My mom is my inspiration and gives me a kick up the backside when I complain too much. She went through a lot - and I mean a lot - and continued working in catering with disintegrating ankles and hands so swollen and disfigured she could barely turn a tap. The jury's still out on whether she has RA as well as osteo but she's of the generation that her head has to be hanging off by a string before she goes to a GP. Because she copes she expects everyone else to cope as well and my dad just hides his head in the sand unless it's him that's ill.

I suppose all my life I've been there for people when they needed me, been a shoulder for them to cry on and an ear for them to rant into. Then the minute I wave my magic "guess what I'm ill" wand they all disappear in a puff of green smoke never to be seen again. I suppose their little daily whines and boo hoos don't mean a lot to me anymore which is probably a little selfish of me but considering the amount of time I've invested in them over the years I think I'm entitled to feel a little bit aggrieved.

It's not that I want sympathy, far from it, I just want people to realise I'm not the same Maggie I was 18 months ago - mentally or physically - and to stop assuming I can go round and fix their computers, give them legal advice, sort out their relationship/family problems for them and to go out partying and clubbing when it suits them. I also need them to understand I can't travel around the country and dress up as a character from Star Wars and run around for 6 hours entertaining kids before undertaking a 3.5 hour drive home only to do it all again the next day just because someone less reliable has dropped out at the last minute. To show I'm not exaggerating I had a phone call only a couple of hours ago from someone trying to weedle me into spending two days at an event over 150 miles away for that very reason!

Maybe I'll carry a little mallet in my bag and when people give me that 'look' when I try to explain how I'm feeling I can pull it out and say, "Here, let me show you ...."

[Cue Screaming]
Laugh Laugh
AnnieB
#5 Posted : Monday, May 31, 2010 9:19:53 PM Quote
Rank: Advanced Member

Groups: Registered

Joined: 5/19/2010
Posts: 384
Hi Maggie,

Instead of the mallet carry the booklet, you are gonna have to learn to say no, because your health is more important and those who disappear in a puff of green smoke never to be seen again well are they really that important in your life.

Take care Anne x



Lorna-A
#6 Posted : Tuesday, June 01, 2010 5:46:42 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 3/8/2010
Posts: 914

Hi Maggie,

You have really been through so much and still are by the sounds of it. Try not to think about the future too much, we all do but its not a good idea. It will drive you insane the worry about the what if's. The future belongs to no-one and so much can happen in between times. Try to do what you can to stay as healthy as you can and limit what you can do. You have to learn to say NO and pace yourself. Thinking about you Lorna x
BarbieGirl
#7 Posted : Tuesday, June 01, 2010 7:38:29 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/3/2009
Posts: 1,110
Location: London
Maggie, the problem is that you have always BEEN THERE and now you want to cut down on the work you do, no one understands. Good old Maggie, lets call her, she'll cover for Tom/Dick or Harry!!
But Maggie cant do it anymore!! They wont understand, they CANT understand, its not them, so why would they want to?
Sorry, but honestly, thats how it is. You have more than done enough, now you need some understanding and empathy, they need to listen. Hand out the leaflets on RA, tell them to read up on why you cant do it anymore.
Start being selfish, they wont like it, but too bad!! Take care x x
BARBARA
Mairead-H
#8 Posted : Wednesday, June 02, 2010 1:32:30 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 5/26/2010
Posts: 128
Location: Birmingham
Ooh I do like this advice about being selfish! BigGrin BigGrin That's some advice I'll definitely be taking up ThumpUp

Luckily for me I'm a budding author specialising in black comedy and psychohorror. After a bad day,rather than destress through a hot bath or a bar of chocolate I like to write about slicing someone's head off and putting it on a stick Laugh. In summary, I feel much better today despite a bit of potentially bad news yesterday.

I had my second appointment with my exceptionally helpful rheumy nurse and advised her the only side effects I'd had from the MTX was a bit of a tight chest and a dry, sore throat for a couple of days after taking it. I knew it was important to mention as I memorise side-effects and contraindications like most people memorise the words to their favourite song.

She's not happy about it and consulted a rheumatologist. He's not happy about it either and they were going to yank me off the stuff immediately only they agreed with my cautious observation that it could be coincidence, that it is the hay fever season and I'm currently surrounded by people with a variety of coughs, sore throats and colds. The upshot is I'm on 12.5mg for the next month under the strict rule that if the throat/chest problems reoccur after taking a dose I stop immediately and contact them.

Did I get depressed? Did I heck. It was my wedding anniversary yesterday and even being served up chicken croquette tapas instead of vegetarian mushroom tapas at our celebratory meal didn't put a cloud on my day. And anyway, what I wrote about the driver who cut me up on the way home brought a smile to my face.
Mairead-H
#9 Posted : Wednesday, June 16, 2010 1:34:58 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 5/26/2010
Posts: 128
Location: Birmingham
I'm on my second week at 12.5mg and six weeks into MTX in general. This time I suffered some mild nausea, headache and exhaustion possibly due to taking it late after a long weekend away in Pembrokeshire.

So far buggerall has happened other than the RA has deteriorated rapidly and significantly. I was better before I started taking the damn drugs. Both hands now are badly affected, my left middle finger looks like it's about to burst and strangely enough the very top joint, near the nail, is now red, hot, swollen and painful despite RA allegedly not supposing to affect those top joints.

I've a two week wait to see the nurse but at this rate I won't be able to drive there, that's for sure. I didn't expect a miracle cure but I certainly didn't expect to get bloody worse!
anne_t
#10 Posted : Saturday, June 19, 2010 11:26:41 PM Quote
Rank: Advanced Member

Groups: Registered

Joined: 12/3/2009
Posts: 302
Location: Rainham Kent
Hi, Maggie,
No miracle cure yet but very often it seems to be worse before getting better. it probably means your body is resenting the intrusion and trying to overcome it. Keep the faith, this may be as bad as it gets. try to rest whilst your body is going through this revolution. Anne
chockers
#11 Posted : Sunday, June 20, 2010 12:06:39 AM Quote
Rank: Advanced Member

Groups: Registered

Joined: 12/3/2009
Posts: 1,035
Location: in a house
Mairead-H wrote:
I've had an interesting life, having always been one to stand out from the crowd and do things different. Sadly my body feels the same way and decided to hit me with swollen, painful knees around 1996. A private consultant told me it was arthritis but he didn't want to specify "which one" because should he be wrong the insurance wouldn't cover any further treatment. He suspected osteoarthritis and prescribed huge doses of ibuprofen.

After reading what such huge doses could do (800mg x 4 daily) I did some research and cut out nightshade and acididic foods. Lo! within a month the agonising, burning, grinding pain had gone and I could walk again without crying.

Three years later I found myself walking in the middle of the road with no idea how I got there. It wasn't a brain tumour, I was reassured after numerous similar episodes, vertigo and severe headaches and blurred vision forced me to seek a consultant. It's probably Meniere's Disease, I was told. "Here's a leaflet. Go and see the Tinnitus clinic and come back if it gets worse." In 2003 it did and I revisited the consultant only to be told I was a hypochondriac and to quite simply bugger off and stop wasting his time.

By then I'd already suffered for a while with what I thought was osteo in the wrists and fingers but a career change with less typing seemed to resolve that issue and I promptly forgot about it until 2008 when I woke up one morning in Barcelona in so much agony I thought I'd dislocated a toe. By the time I got back to blighty it had disappeared apart from the odd twinge when I positioned my feet awkwardly. It returned six months later but by the time I got to the GP the swelling and redness had disappeared. I was reassured it wasn't gout and for the first time I began to have a nagging suspicion it could be rheumatoid arthritis.

In 2009 severe pain and swelling developed in my thumbs and forefingers on a trip to London. By now I was beginning to wonder why I only got ill on holiday. I was already using a walking stick for the Meniere's I didn't have so walking was very, very difficult. The pain promptly disappeared the second I returned home and reappeared a month later on a research trip to Belfast. "You can fry those eggs on my hands if you like," I said to the waitress as we ordered our Belfast fry. Such was the agony I had to ask my husband to cut my food as I was unable to use a knife and fork.

Finally I sought medical help at around the same time I woke up with severe pain (but no heat or swelling) in my right shoulder. My GP was on holiday so I saw a locum, a bone surgeon apparently, who was an expert in 'these things' who told me I had a frozen shoulder and I was too young to have arthritis and there was no sign of it anyway. Two weeks later a return visit to my very capable GP resulted in me being taken off the toxic painkillers I'd been prescribed to a softer analgesic and a rapid appointment with a rheumatologist and physiotherapist.

To cut a long story short, after some argy bargy about whether I had psioratic arthritis or not I was treated with steroids and the various forms of rheumatoid arthritis were discussed. From then until November my hands went up and down like a balloon at a kids' party until finally the swelling and stiffness was bad enough to get me a diagnosis of seronegative inflammatory arthritis. It had literally taken less than 6 months for the diagnosis so I understand I've been very lucky.

I also realise I've been very typical in taking 10 years to get a diagnosis of Meniere's Disease. The tests I had last year confirmed it. Deterioration of my inner ear on the right and it's in the left as well. So yay for me, I get diagnoses of two chronic, disabling diseases within three months of each other. Good job I'm tough skinned.

But I digress. A quick experiment in Sulfasalazine resulted in me nearly losing my skin to a nasty dose of Stevens-Johnson syndrome and some urgent tests to see if my liver/kidneys were damaged. Apparently they're not but I had months of problems with my skin which still recurrs from time to time and an overnight inability to hold my liquor which was never a problem before.

I refused further medication other than steroids and analgesics after that until earlier this year things deteriorated and I realised I had no damn choice.

I'm now on my fourth week of MXT and currently on 10mg after a starter dose for two weeks at 7.5mg. I'm up to 12.5mg next week for two weeks and then - well, you know the story.

I look back now and begin to see there's a definite pattern with all these niggling aches, pains, swelling, "RSI" and other strange ailments I've suffered since 1996. I also believe the Meniere's Disease results from the same autoimmune disorder that's now nibbling away at my joints and in fact that was probably the first symptom. One of its causes can be rheumatoid arthritis so it seems to make sense.

This blog will help me to keep my sanity as I enter the hurdy gurdy world of methotrexate and God knows what else I need to do to control this betrayal by my immune system.

So far nothing. No sickness, nausea on the second week only and nothing since, no headaches, no more tiredness than I'm used to. Maybe it's early days yet but I can report my hands have actually gotten worse which is interesting. Ho hum.

This is Maggie, last survivor of the Sulfasalazine signing off ....

(I'm an insufferable sci-fi geek by the way)

I have meniers as well .I have had an op done by mr Moffett at Addenbrookes which had the leading clinc for meniers .These days the same affcet is done by putting a chemail in your ear .Which works as well as my 3 hour op .I have not had an acctack for 14 years in the 90s there where 3 ops you could have one being a shunt put in and one servering the nerves to the brain and one taking the middle of ear out .
Have something done as its the most alfull thing i have ever had in my life .aS NOTHING worse then being out then falling down ( i had it bad ) and being sick .And my balance was also affceted i would have none and could not stand up .

Mr Moffett put a mico hole in my ear he was going to put a shunt in and found the inside of the ear was deformed so he did something else .
This has worked very well .But ent tells me there are so many new things done in out patants now 15 yrs later
Christine
The chocolate eating housewife ...The washer woman .....naughty lady
Mairead-H
#12 Posted : Thursday, August 05, 2010 10:33:44 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 5/26/2010
Posts: 128
Location: Birmingham
It's now August and things aren't getting any better. After the severe flare up mentioned earlier I managed to get an emergency appointment with a registrar. She wanted to write me off work, I refused as the Government's public sector cuts are hitting charities (including mine) very, very hard and my role is to try and save jobs (including mine). Get me through the next few weeks, I told her, and I'll think about it.

So she doubled my dose of Naproxen (apparently I'd been put on a juvenile dose by my anti-NSAID GP), gave me a long course of steroids to reduce the severe pain and swelling in both hands, prescribed some stomach protectors and upped my dose of MTX.

A month later the swelling and pain is way down but nobody seems to know whether this is because of the MTX or the steroids. My steroid dosage is gradually being reduced and they've now put me up to 17.5mg MTX to see. They're keeping me on this dose for two months as there's now some concern 'something' is causing severe anaemia so this week I've also had a blood film test on top of the usual blood tests. They suspect damage to the lining of the stomach and that I could be bleeding. I've also been quite unwell this week with what could be a combination of a stomach virus, drug damage, damage caused by antiobotics I took two weeks ago to shift an infected burn or either one. At this stage I don't know what's makign me ill but I've lost over 4lbs since Sunday.

They've also hinted the MTX may not be working and they may take me off it altogether as they're not happy with my progress.

And now, even though everything I read tells me MTX doesn't really open me up to infections/disease much more than usual I've alerady had a mild burn get very badly infected and an old nose piercing suddenly go bad to the point that half the inside of the nostril is now covered with a nasty open wound and scab.

You never really appreciate your health until you lose it. I'd give anything to have it back.
prioryc
#13 Posted : Friday, August 06, 2010 12:00:14 AM Quote
Rank: Advanced Member

Groups: Registered

Joined: 12/3/2009
Posts: 854
Hi Mairead,

Think we can all sympathise with your statement about never appreciating your health and so on!

It could be the MTX causing the healing problem but more than likely it is the steroid. It was probably the reason you initially felt so much better as well. Strange drug, it makes you feel so much better but is damaging as well!

Whatever, I hope that the cause of all your problems is soon found and you can be helped to be much better.

Take care,

Eleanor x
dorat
#14 Posted : Friday, August 06, 2010 1:08:31 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/3/2009
Posts: 3,157
Location: Huddersfield
What an awful time you are having Mairead!

I hope things start to improve for you soon.

Love, Doreen xx
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