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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

...to want to just walk without pain!

46 replies

Icantstopeatinglol · 22/03/2014 20:15

I'vw got arthritis and I've now got inflammation in my right foot so bad it's agony and I'm struggling to walk. I'm 36 with 2 small kids so not good at all. I think I have a tailors bunion just to top it off!
Don't know what to do?! I'm between consultants cos didn't feel my last one was listening to me so now I'm off drugs (apart from anti inflammatries) with no support at all :(
Anyone else been through this? Am I best going to gp or chase the hospital?

OP posts:
candycoatedwaterdrops · 22/03/2014 23:10

I hear you. I have rheumatoid, it is the bane of my life.

See your GP and get the new referral chased up. Are you not on any other pain relief; codeine or paracetamol? It is unacceptable to leave a diagnosed inflammatory arthritis patient without proper care!

Icantstopeatinglol · 22/03/2014 23:26

happyjules I feel like the last year I've been ignored really, yea I've had treatment but they've not really listened to me. I'm hoping the new consultants are better!...not that I have an appointment yet even tho last consultant said within wks and that was 2 wks ago. I have neck pain and the two consultants I've seen have dismissed it cos I can move my neck!! Yea I can now but left untreated I won't be able to!
candycoate I've got codeine and tramadol to see me through but I'm really concerned at the speed that everything is flaring up. My neck, shoulder, knee, wrist, hands and now most severely my feet are all bad. I'm definitely speaking to my gp on Monday.
Thanks tho, feel like at least some people understand. Most people who don't understand tell me I need to exercise or change my diet.....I wish it was that simple! Then I feel guilty thinking have I brought this on myself?!

OP posts:
mouldyironingboard · 22/03/2014 23:42

I'd recommend having a look at the arthritis care website (if you haven't already). There may be local information in their forum about the best consultants in your area.

If your feet are affected you could ask to see a podiatrist as well as a rheumatologist. You can also get help from a physiotherapist and occupational therapists but obviously the inflammation needs to be controlled first.

Try a different consultant privately as you need to be treated quickly before your joints get damaged permanently. You can change to your NHS local hospital rheumatology department once you start to see some improvement.

LST · 23/03/2014 07:02

Op I completely sympathise. I've had ra since I was 16. I am now 23 with 2dcs. 2 and 9 weeks. I am finding things really tough at the moment too. I have recently started methotrexate, but until they work I am on a cocktail of cocodamol and naproxin along with all the side effect reducing pills.

It's not easy. people just do not realise. I recently shaved my head to raise funds for arthritis research uk. Nobody as t work realised young people got ra or how badly it effects day to day life.

I'm sorry you're going through this too and I hope you get to see a better consultant soon.

Icantstopeatinglol · 23/03/2014 07:25

Hi mouldy and LST, I think my main concern is I'm on no prevention medication and a lot of my joints are flaring so I'm concerned about joint damage. Definitely chasing things up this wk, I don't care what the hospital think of me. It's not them that's going to have to live with disability if this doesn't get sorted asap :(

OP posts:
Icantstopeatinglol · 23/03/2014 07:27

I also think when people look at me they don't necessarily see any problems so assume I'm fine? Although my limps definitely back now!

OP posts:
sashh · 23/03/2014 08:20

Have you tried taking paracetamol WITH the tramadol?

I also get steroid jabs from my GP, for me they are wonderful but I know they don''t work for everyone.

Icantstopeatinglol · 23/03/2014 08:24

Hi sashh no I haven't tried paracetamol with tramadol. Thanks I'll try that!
The pain is bad but my main concern is the damage it's causing whilst left untreated, hopefully I'll get sorted this week.

OP posts:
tiredoutgran · 23/03/2014 09:15

I so feel for you, mine isn't arthritis but (hopefully) the worst is long term but temporary. I am on a high dose of gabapentin, along with co-codamol and diazepam, the pain is not completely controlled but manageable but the doses of meds mean I cannot drive so unable to work yet again. With 4 kids, one being only 3, it is the being unable to do anything with them because I am so doped up, I am due to go on half pay because of a broken ankle last year and can see myself losing my job completely. My 'urgent' MRI took 4 weeks to organise. I almost feel like the doctors don't live in the real world, if I were to leave my animals in the sort of pain I was left in until they sorted meds out I would be prosecuted.

I hope that they manage to get your pain relief sorted so that you can cope with any pain, do look at homeopathic remedies as they can be used alongside other meds (mostly but check) and some do help.

candycoatedwaterdrops · 23/03/2014 10:12

How long have you been off DMARDs? If it's been a few months, I'm not surprised that you're flaring like mad. Sad

Not sure if yours is rheumatoid or not but NRAS are fantastic www.nras.org.uk/ and they do support people with other types of inflammatory arthritis too. I second the PP who said arthritis care. They both have helplines and online chat forums which have been a lifesaver for me during tough times.

I do get the difficulty in it being an invisible condition too, especially when you're a younger person. I've had people say to me that I don't look that bad and I want to scream that they must have x-ray eyes and can see my inflamed and damaged joints! Have you heard of the spoon theory? www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

This little story is my personal fave though:

"Acquiring a disability is a bit like getting home to find there's a gorilla in your house. You contact the approved and official channels to get rid of infestations of wild animals (in this case, the NHS) and they umm and aah and suck air in through their teeth before saying something roughly equivalent to "what you've got 'ere, mate, is a gorilla, and there ain't really a lot what we can do about them, see..." before sending you back home to the gorilla's waiting arms.

The gorilla in your house will cause problems in every part of your life. Your spouse may decide that (s)he can't deal with the gorilla, and leave. Your boss may get upset that you've brought the gorilla to work with you and it's disrupting your colleagues, who don't know how to deal with gorillas. You're arriving for work wearing a suit the gorilla has slept on. Some days you don't turn up at all because at the last minute, the gorilla has decided to barricade you into the bathroom or sit on you so you can't get out of bed. Your friends will get cheesed off because when you see them - which isn't often, because they don't want to come to your house for fear of the gorilla and the gorilla won't always let you out - your only topic of conversation is this darn gorilla and the devastation it is causing.

There are three major approaches to the gorilla in your house.

One is to ignore it and hope it goes away. This is unlikely to work. A 300-lb gorilla will sleep where he likes, and if that's on top of you, it will have an effect on you.

Another is to try and force the gorilla out, wrestling constantly with it, spending all your time fighting it. This is often a losing battle. Some choose to give all their money to people who will come and wave crystals at the gorilla, from a safe distance of course. This also tends to be a losing battle. However, every so often, one in a hundred gorillas will get bored and wander off. The crystal-wavers and gorilla-wrestlers will claim victory, and tell the media that it's a massive breakthrough in gorilla-control, and that the 99 other gorilla-wrestlers just aren't doing it right due to sloppy thinking or lack of commitment. The 99 other gorilla-wrestlers won't have the time or energy to argue.

I have known people spend the best years of their life and tens of thousands of pounds trying to force their gorillas to go away. The tragedy is that even if it does wander off for a while, they won't get their pre-gorilla lives back. They'll be older, skint, exhausted, and constantly afraid that the gorilla may well come back.

The third way to deal with the gorilla in your house is to accept it, tame it, and make it part of your life. Figure out a way to calm your gorilla down. Teach it how to sit still until you are able to take it places with you without it making a scene. Find out how to equip your home with gorilla-friendly furnishings and appliances. Negotiate with your boss about ways to accommodate, or even make use of, your gorilla. Meet other people who live with gorillas and enjoy having something in common, and share gorilla-taming tips.

People get really upset about this and throw around accusations of "giving up" and "not even trying". They even suggest that you enjoy having a gorilla around because of the attention it gets you (while ignoring the massive pile of steaming gorilla-turds in your bedroom every morning and night, not to mention your weekly bill for bananas). The best way to deal with these people is to smile and remind yourself that one day, they too will have a gorilla in their house."

BoffinMum · 23/03/2014 10:16

I had five years of arthritis hell until the NHS sent me on a three week pain management course. It changed my life, by taming the proverbial gorilla very nicely. I can now ski, and do normal activities almost painlessly a lot of the time. I say get thyself to a pain consultant and ask to do this.

Icantstopeatinglol · 23/03/2014 10:26

Hi candy I've got psoriatic arthritis and it's been 4wks since my last injection so definitely feeling it now. I feel like I'm having to kick up a fuss just to get help! I've left my last consultant 2wks ago cos of lack of support and now I've got none!! It's so annoying! I sometimes wish these people could live in our shoes for a couple of days just to understand what we're going through.
I have a cleaner who does 2hrs every 2wks which actually isn't that much and costs £20 but to be honest it's worth every penny and she does the worst jobs to help me out. But, the worst part is if I happen to mention cleaner around anyone (even friends who know I have arthritis) they always say 'I wish I had a cleaner!' and 'you only work part time why do you need a cleaner?' You know what I feel like saying (and please excuse the language) 'I wish I had joints that didn't fucking hurt me every single day!' 'I work part time because I can't physically sit at a desk 5days a wk and I wish I fucking could cos I need the money!!' and 'I'd love to be fucking normal just like you and not have to inject myself with toxins to get a little bit close to the normal you take for granted!!'.
Sorry for the rant, just gets to me when people assume you're lazy or exaggerating things :(

OP posts:
pancakesfortea · 24/03/2014 21:03

I completely get the frustration of the invisiblr disability. Once, on a bus, feet full of flared joints, a man.of about 60 got on. There were plenty of seats but he wanted to stay with his wife, who sat down near me, so he stood. As he was getting off he turned to me and said "when I was your age I would have offered my seat to someone my age." He jumped off (pretty spritely) before I had a chance to reply. I could have cried.

Trying to take things one day at a time though. I'm having a bit of a flare but its manageable. Went for a long walk and played football with the boys. So today was a good day.

Good luck getting things under control OP.

rootypig · 24/03/2014 21:15

That sounds really ignorant of them OP Angry
I think you would be justified in saying those things!

pancakes I think they should make arthritis badges

alsmutko · 24/03/2014 21:48

I have OA in both knees so I really feel for you. Do join Arthritis Care or at least look at their website regularly.
I bought a shooting stick which I sometimes use when I know I'm going to be standing around (standing is worse than walking IME). I also try to pace myself and not over-do things, get people to help out etc.
I won't get on a crowded bus I'd prefer to wait for one where there are seats available unless its a really short journey. Otherwise you do get glared at if you've got a seat when there's an older person standing. If only I had a fiver for every time I've been told I'm too young for arthritis! I'm not even that young actually, just look younger.

BoffinMum · 24/03/2014 22:29

TBH I just tell people I have early onset arthritis (I actually have something more complicated but that's my out and about label) and I find then they are very helpful, as everyone knows someone who has it. I would recommend this as a strategy rather than suffering in silence.

BoffinMum · 24/03/2014 22:30

Can I just sing the praises of stick on hot patches while I am posting? They can make a massive difference to morale, and reduce pain quite dramatically.

spongebob13 · 25/03/2014 01:30

I have psoriatic arthritis too. I take humira injections every 2 weeks unless sick. took it today feel awful. side effects are not pleasant. OP how come u havent had injection in 4 weeks?

Icantstopeatinglol · 25/03/2014 07:33

Hi guys, thanks for the replies. Don't actually feel too bad today. Actually having stomach problems and lower back pain which is distracting me from my feet a bit.
spongebob I was on methotrexate and the side effects were bad so spoke to my consultant who was happy for me to stop taking it....but then I've asked to change consultants which has meant I'm without any treatment until I see the new consultant so I'm stuck basically!
I'm giving them til tomorrow then I'm chasing the hospital again and if I'm not happy with their response I'm getting into PALS.
Feels like a constant battle half the time!

OP posts:
wonkylegs · 25/03/2014 08:01

Push both the hospital & your GP for that new referral. Whilst you are waiting you could ask your GP if they could give you short term oral steroids to give a bit of relief. I swapped consultants due to terrible care by my original one. It wasn't fun but I wrote to the hospital, GP & consultant stating clearly why my care wasn't acceptable and even with profuse apologies I wanted to change consultants. I'm now under the head of rheumatology's care. I only see her every 6mths but can phone if there is a problem & be seen sooner. I am also looked after by my specialist nurse (6mths) & monitoring clinic(2mths)
MTX was fab for me until I had a break from it when DS was born & then when I went back on it, it wasn't as effective. I'm now on it with Humira which is a biologic drug.
MTX is considered the 'gold standard' drug to treat RA so consultants do tend to try to get patients to stick with it. How did they treat your side effects? Increased folate? Injectable rather than oral MTX.
Sometimes they might try a lower dose MTX combined with another drug. However if you have had 2 failed DMARD drugs they may decide you are eligible for biologics. These have risks but for me they work so well they are more than acceptable.
RA treatment can be a bit of a depressing slog until you get the combination right. Unfortunately as you need to give drugs a bit of time to work it can also take a while to get right. I completely recommend forums like the Arthritis Care website discussion boards & Creaky Joints to help give that everyday support from people who understand that you need to get through.

Icantstopeatinglol · 25/03/2014 21:39

Hi wonkylegs been on to the hospital today and spoke to a few people and I've been guaranteed the letter will be handed to the dr this afternoon to decide how quickly he needs to see me (hopefully asap!!).
Regarding the mtx, I started on the tablets and was on 20mg per wk. They made me really sick tho I already have tummy problems and take strong anti inflammatries every day so switched to injections. It got to the point I was taking folic acid every day apart from injection day. I has terrible mouth ulcers, my hair was snapping and my periods stopped!! It just felt like my body was getting trashed. Felt terrible for half the week...and trying to look after a 3 & 6 yr old whilst feeling rough with hangover type symptoms was not good, I'm sure you know.
I just decided enough was enough. I know there's other drugs out there so fingers crossed I find one quickly that helps!

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