Still waiting and in a lot of pain

[KayleighMeek]

Still waiting and in a lot of pain-Update

Hi everyone,

So my enteropahic arthritis is still very bad and the past 3days I have been stuck in bed. The pain has gotten worse my left knee is so swollen it doesn't even look like a knee anymore and my right hip is agony. Pain killers are having very little affect and hot and cold compress' aren't making any difference either.
I phoned my GI secretary today as they told me to ring if I haven't heard anything but this time and the last note she could find was that the GI needed to has the meeting with rheumatology and no update from then. I really hope something has been done I don't think they realise how much the arthritis is affecting my everyday life and also my work. Whilst I was on the phone the secretary asked what it was I was phoning about and that point I just broke down. I try to stay strong and put on a brave face but this is all getting a bit much and pain and lack of sleep don't help things.
They said they would try and phone back today but they can't say they deffinatley will be able to.
Sorry for a bit of a vent but I needed to get it out and I know you will understand x

 

[nogutsnoglory]

I'm so sorry you are in so much agony. How are you on the phone? Can you be firm and say you are in excruciating pain and demand to talk to the doctor?

 

[KayleighMeek]

I am usually ok on the phone and good at getting things across just at the moment finding it hard to deal with. If I don't hear anything soon I am going to phone the rheumatology nurse so hopefully they can chase it up from that side too, I have pulled myself together a bit more now.
Unfortunatley the GI dr I saw was off ill last week so that may have delayed things but I can't deal with any more delays.

 

[nogutsnoglory]

If you don't hear back soon I wouldn't hesitate pestering them and calling back saying you are in excruciating pain. They may tell you to just visit the ER though since painkillers aren't helping you on their own.

 

[KayleighMeek]

Thank you. I am giving them until 2pm so about 25mins and then I am going to make another call x

 

[KayleighMeek]

Well tried to phone rheumatology nurses but just got an answer machine. I left a message but I am going to try and phone again later

 

[nogutsnoglory]

Ugh it stinks but sadly we need to be persistent with these doctors to get the care we desperately need and rightfully deserve. I hope you get through soon and more importantly start to find relief.

 

[KayleighMeek]

Just had a phone call back from rheumatology nurses they dont have any more information so they put me through to another secretary that wasn't even the right secretary for my consultant but she said she would pass a message on. I feel like screaming but anyway still waiting to hear back from GI.
Not one of the departments I have spoken to has suggested anything I can do in the mean time.

 

[amrycrohns]

I don't know how UK works, but I would defaintly have someone driving me to the ER if the situation is as miserable as it sounds.

 

[Su-bee]

I am so sorry you are having a horrible arthritis flare, and on top of that getting a run-around from the doctors. I'm sure finding the right medication is going to be the thing to help you most, but when the doctors aren't answering, you cannot be in such intense pain that long.

This may not help at all, but I've also gone through what you are right now so this is how I got by (because I never really got relief from medication myself).

I know this sounds mean and uncaring, but even though it hurts, you must get out of bed and move around. Try in small intervals, whatever you can stand. Try extending the intervals. Nothing crazy, just walking. No lifting or bending.

Also while you are in bed, you can do stretches, just simple ones. One that really helps my hip is to lay flat on my back (a joke really, I can never lay flat on my back), bend one knee and extend the other leg flat, and relax as much as possible. The stretch in the extended leg will do it's own work on the hip if you can relax and take deep breaths. Don't do this if it intensifies the pain, you should feel a stretch but not pain.

If you can tolerate it, try Tylenol Arthritis. For long periods of time it can mess up your liver but in short term can sometimes take the edge off.

Have a good cry. Sometimes it's all you can do, but sometimes I feel better after crying and groaning for a bit. Don't feel guilty about crying, it can relieve some stress also.

Take naps whenever you can. It's rough not sleeping and is not helping your healing. Even if it's only 10 minute naps throughout the day, it will help.

I don't know about in the UK, but here the go-to doctor is the rheumatologist for meds. My GI stays out of that decision process unless it's to run a medication by him, but usually if it's good for arthritis, it's good for crohns also. There's so many things to try like sulfa drugs (if you're not allergic), immune suppressants, antidepressants. There will be something to take away enough pain so you can have your life back.

Again, I am so sorry you are going through this, please keep us updated.

 

[KayleighMeek]

Thank you for the suggestions I think it really is just waiting for them to get back to me and starting a new treatment.
I have been trying to move my legs in bed and I have to hobble back and forward to the bathroom but the pain is so intense and my knee is so swollen I can barely bend it even lifting my legs in and out of bed is excrutiating pain and weight baring for any length of time is not possible at the moment. I will carry on trying stretching as I am desperate for anything to work.
We don't have the brand Tylenol in the uk but I have been taking co-codamol and on occasion tramadol but both make me feel nauseous and its hard to deal with on top of the pain and I haven't noticed any difference in pain when I have taken it.

I have been on and off crying today and it has helped. With both my most recent appointments with GI and rheumatologist they have said we want to speak with the other S I have been through a lot of medications. This is what was meant to had happened but found out today it hasn't.
X

 

[Su-bee]

Have you heard yet from the doctors today? I'm hoping they have gotten back to you! If not, maybe amrycrohns is right and you should just go to the hospital. You shouldn't have to wait so long when you are in such pain. Let us know how you're doing.

 

[KayleighMeek]

I had a phone call back today from rheumatology consultant but be just said he wanted to sit an appointment out so more waiting. I still haven't heard back from the GI side it's getting very annoying.
I really don't want to go to a&e because I will just wait for ages there and will probably have very little done and still have to wait to see the consultants.
The pain is still bad and I feel really sick, not been eating much and keep getting hot flushes.
I am making more phone calls tomorrow I need something done even if its just steroid injections just to keep me going.

 

[amrycrohns]

I would still go to ER and get pain killers and steriods via IV to help, you may try calling your primary and have them call doctor, I have noticed doctors answer other doctors a lot faster then they do thier patients. If your primary force's the issue I bet he/she can get you seen pretty fast.

 

[KayleighMeek]

Just a bit of an update I am still suffering quite a bit most of the time I am still mobile but I have again got to the point where the pain is so severe I can't stand on my left leg and my knee is very swollen almost to the point were the swelling is solid.
I have an appointment but not until the 28th of May I have phoned to see if it could be moved but they said there is nothing else and because my GI dr and rheumatologist are both going to be there it would be hard to re arrange, which I do understand but it doesn't help me. Yesterday at work it all got a bit much the pain was bad and everything seemed so far away that I had a bit of a meltdown in the corridor outside work I just couldn't stop it the tears just kept coming, today I am still a bit emotional but not as bad as yesterday.
When I spoke to the rheumatology nurse on the phone and told her the medication and pain killers I was taking she was shocked that I was still in pain and that it wasn't working so I think they are finally starting to understand how bad this is its not just achey joints.
I was meant to be working tonight and tomorrow but I am just not able to I hate missing work I feel so guilty especially we have a massive change happening today and tomorrow so they had to call in more staff any way and now I'm ill on top of it. I know I shouldn't but I worry what people think.
Anyway that is my update hopefully I am finally getting close to sorting this out x