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

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Gemsi
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Date Joined Feb 2007
Total Posts : 1050
   Posted 6/27/2011 12:31 PM (GMT -6)   
Hey all,
 
I'm in absolute agony. Every single muscle and joint in my body is hurting, it's like an achey pain all the time and sharp pain whenever I move, even twitch.  I'm covered in spots which I've always been told are Erythema Nodosum, but today they had another thought thinking they might be Erythema Multiforme. I've been on a cocktail of painkillers for days just so I can move about, but they aren't totally helping. I'm taking 2x Paracetamol, 2 or 3 x 30mg Nefopam and 2 x 50mg Tramadol. I've also been given Naproxen to add to it today but that hasn't done much either. I still cry everytime I get up and I'm still waddling around like a penguin.
 
This morning was worse, I couldn't even lift my head enough to take painkillers and my hubby had to help. I waited 2 hours till it calmed down enough so I could get out of bed. I'm going to take Naproxen seperatly from the others but just wondered if anyone has any idea about whether the different meds should all be split into different times, or if blasting it all at once is the best way? The dose of meds I'm taking is enough to whack a migrane out cold for at least 6 hours, yet it's hardley touching this. At clinic today they had to get me a wheelchair to push me between clinics I was struggling so much to put one foot infront of the other.
 
This problem has happened a lot of times in my life, but it's only been this bad a small handful of the time. I've been free of it for about a year then it came on a month ago and lasted 6 days then went. Coming on again this soon is daft and I'm on day 3 and it's a lot worse than before. I'm so down about it, I hate not being able to move and it's really getting to me. Feel like I'm falling apart. :(
 
Thanks for reading and hope everyone is well,
 
Gem x
Hey, I'm Gem with CF, age 25 and diagnosed at 2 years old. I'm from the UK and say weird things sometimes. I'm no expert but I've lived through a lot of CF stuff.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type thing.

Post Edited (Gemsi) : 6/27/2011 1:07:41 PM (GMT-6)


tmjpain
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Date Joined Oct 2008
Total Posts : 2024
   Posted 6/27/2011 12:47 PM (GMT -6)   
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

left forum.
Regular Member


Date Joined Jul 2010
Total Posts : 200
   Posted 6/27/2011 12:55 PM (GMT -6)   
I'm so sorry you are suffering so much and I really hope things get better for you soon! Here if you need to vent or a shoulder to cry on!

I get erythema nodosum too so i can relate to the pain! I get the weirdest symptoms with it too!

Sending my love and praying for you!
15 years old,
Chronic stomach pain with no diagnosis yet and lots of other things.

When the going gets tough, the tough get going.

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 6/27/2011 1:17 PM (GMT -6)   
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, I'm Gem with CF, age 25 and diagnosed at 2 years old. I'm from the UK and say weird things sometimes. I'm no expert but I've lived through a lot of CF stuff.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type thing.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16301
   Posted 6/27/2011 1:36 PM (GMT -6)   
Hi Gem

Please take care of yourself.I am sorry that you are feeling so badly. What you have described sounds so miserable. It sounds like the drs may need to give you something different for pain since what you are taking is not getting it covered in a decent manner. I know what Tramadol and Naproxen are but have no clue about your other two meds. When you saw the dr did you tell him how bad the pain is? I do think here in the states NE is sometimes treated with steroids, I have a very good friend with this problem.

Why not call your drs office and speak with his nurse and ask her about how the dr wants you to take these meds, either all together or at different times during the day and see what she can find out for you.

Please take care of yourself.
Moderator Chronic Pain Forum

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 6/27/2011 2:38 PM (GMT -6)   
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
Hey, I'm Gem with CF, age 25 and diagnosed at 2 years old. I'm from the UK and say weird things sometimes. I'm no expert but I've lived through a lot of CF stuff.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type thing.

left forum.
Regular Member


Date Joined Jul 2010
Total Posts : 200
   Posted 6/27/2011 3:39 PM (GMT -6)   
I get it on my shins mainly, they are all pretty close together like 2cm apart maximum, and stick out a lot! They just look like really bad start of a bruise just red and hot and lumpy then eventually turn purple/brown then yellow and disappear. I find putting heaps of pressure on them could help so on my legs presure bandages.. and ice sometimes, otherwise i don't really know sorry!

I haven't had medication for them but i was offered steroids too! Let me know how you go, I hope you get some relief very soon!! It sucks hey!

xxxx
15 years old,
Chronic stomach pain with no diagnosis yet and lots of other things.

When the going gets tough, the tough get going.

luckyflowers
Regular Member


Date Joined May 2011
Total Posts : 164
   Posted 6/27/2011 9:21 PM (GMT -6)   
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,
Dx: Herniated disk in my neck C6-C7, Degenerative disc disease and arthritis in my neck, sciatica, RLS, migraines and post-op RNY gastric by pass and depression.

Meds: Oxy, Nucynta, percocet, norco, xanax(as needed), sinement, topamax, imitrex, and paxil

Personal: Single mom 43yrs old to three children- two girls 6 and 13 and my son 16yrs old. I work fulltime.

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 6/27/2011 10:15 PM (GMT -6)   
Hi gemsi

I'm so sorry that you're having such bad pain. I agree with what the others have said. I would advise you to call your doctor and tell them that the meds you're taking are not working too well. I wish you lots of luck with getting your pain down.

You take care.

hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 6/29/2011 12:26 PM (GMT -6)   
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
Hey, I'm Gem with CF, age 25 and diagnosed at 2 years old. I'm from the UK and say weird things sometimes. I'm no expert but I've lived through a lot of CF stuff.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type thing.
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