So much pain, and can't do anything about it.

Oh gosh Gemsi, I am so sorry that you are in so much pain and can't move. I sure hope things improve

for you. Hang in there and keep posting ok. Others will be by to help you as well. Take it 15 min. at a time.

Stay in the now. Deep breath and listen to soft music. Those are some of the little things I try to do with my

bad pain and depression.

We care
Suzane

Thanks Suzane and Buttercup. I'm trying not to move about too much, but still it hurts bad. It's all in my lung muscles too, so I can't even breathe right meaning I'm not clearing my chest enough. When I do start coughing then I can't stop for ages. I'm trying to do things to keep me relaxed and calm but when I've asked my hubby for the 5th time to please get me a drink, I really getting fed up now and it is such a massive effort to get up and even go to the toilet, never mind for anything that he can do for me.

Buttercup, when you've had erythema nodosum what were the spots like? Mine this time are quite clustered much more than usual, but they're exactly the same spots in appearance. They once suggested steroids to help treat it, is there anything you've had that has helped ease the pain off?

Thanks
Gem x

Hey straydog,

Tramadol, Nefopam and paracetamol are regular pain meds for me, so I'm sort of used to dealing with them, except I'll usually only take Tramadol or Nefopam to deal with regular muscle pain, this pain calls for them both. Naproxen is one I had when younger for joint pain so know it is safe for me. I have a big problems with meds. Ibruprofen and Asprin set my asthma off and Codeine makes me really shakey, so they're wary abut extra meds they will give me unless I've had them before. Never thought of asking them about dosing, usually I just chuck them all down in one then do it again 4-6 hours later and hope for the best. That method usually works, but seems to be not that helpful when I get these spots. Also thinking about the effect on my kidneys having them al at once, could it damage them getting a huge overload?

Paracetamol is the regular everyday pain med everyone uses over here in the UK, I forgot you don't usually get it over there. Nefopam is also known as acupan and is mostly used across Europe. It's for treatment of moderate to severe pain.

It was my CF consultant who I saw and he was shocked by how much pain I must have been in when he saw the spots. I was in tears to as getting from the car into clinic had been a big struggle. They were going to give me steroids there and then and bloods, but after speaking to the dermatologist they want me to wait until Wednesday afternoon when I see dermatologist. It's never been seen by a dermatologist yet due to them not doing same day, or next day appointments. I think they want me to have a skin biopsy aswell.

Think my main problem is a couple of years ago this wouldn't have mattered, I could take a few days or weeks out and rest up as I wasn't working and stayed home all day. I've been looking for a part-time teaching job recently, but I don't think it's going to work out if they can't find a way to either stop this pain from happening or at least blasting it straight away and making it go before any real problems. I won't have chance to stay home and rest if I'm a teacher. I think this is why it's bothering me way more than in the past. :(

I may ring the hospital tomorrow to ask about med times and when to take them. They know how I have been taking them and didn't suggest anything different. I only got told not to take the Naproxen within 2 hours of taking omeprazole in the morning.

Thanks Straydog
Gem x

Oh my this just sound so painful. I just can't imagine. I am so so sorry your going through all this. I agree with Paula. Please call the Dr and see if they can't atleast get you comfortable.

Hugs,

Hi everyone,

Well typically most of the spots cleared up today before I got to the dermatologist. It always happens like that, nurses have always joked that they think my spots are afraid of being found out. Anyway I was still covered in bruises from where they had been, so they didn't think I was totally cracking up. We managed to find 3 'live' ones still on my legs, they picked the biggest and attacked that. They did a skin biopsy (which hurt:'().

They are 99% certain it is Erythema Nodosum and it is being triggered by a deficiency in something called 'Alpha 1 Antitrypsin'. They've took some blood to check these levels too. I'd be very interested to hear if I am low in this. After a quick google search some of the symptoms of it sound similar to Cystic Fibrosis. It does say it would stop protection on the lungs, but for someone with CF my lungs don't damage quite as easily as a lot of others and also another symptom would be weight loss and I am overweight. If I do have this deficiency, maybe they cancel each other out a bit. :P

Other than bruised apperance though my spots don't really follow a pattern of erythema nodosum. One thing I wonder is if it's actually some weird sort of inflammatry response to arthiritus and that is why just before spots appear I start hurting all over. Even though my spots are going down I'm still in pain in places where spots don't even appear such as my fingers and my hips (they never go up far past my knee).

I guess I'll have to wait for the results anyway. I made them do an extra CPK and ESR blood test. They were going to only do alpha 1 antitrypsin and I thought really it would be best to do my other regulars too to see whether there was any alteration in those. I'm sure I must have come across as very bossy, but I'd rather they did them all.

So, now it's just a waiting game. They couldn't think of anymore painkillers for me to have. And I think I'd be wary if they had. I am very restricted with painkillers. My cystic Fibrosis team wasn't very keen on giving me the naproxen even and made me sit and wait half an hour after taking it to make sure I had no reactions. about 2 years ago they sat and went through all pain meds. Pretty much everything was crossed off as no go drugs except for Tramadol, Nefopam and Paracetamol. There were a couple of others that they thought would be ok, but I was allergic too. I'm on the highest dose I can have of each of those 3 painkillers. The Naproxen I am on is 250mg 3 x a day for 7 days. I have a feeling they put me on the smallest dose they could as they always do that. I'm annoyingly not like other people, I'm too sensetive to things and they have to be careful. When I have IV antibiotics then for the first 2 days they have me on a very low dose, even though for the last 3 years I've always been put on the same antibiotics. I have been splitting the painkillers up a bit though and that is helping a little.

Because of the skin biopsy I've just been told I have to stay off that leg for a week and rest up. Though I'm not missing the gala this weekend where I am face painting. Just going to have to make sure I stay sat down :P

Thank you so much for all your thought and support and for giving me a place to vent a bit.

Hugs to all
Gem x