Venting

[Azabat]

Can't sleep. My hands are on fire, and it seems unfair that even my sleeping pill won't put it out. I lay in bed begging it to stop, counting down from 1000 in 3's just to distract myself, hoping to lull myself to sleep, but every time I move (or don't move) some part of me is screaming. Knees, feet, wrists and elbows. I'm out of hope and patience, tonight. I just want it to stop hurting! The weather shifted and I did a little too much cleaning, and this seems totally out of proportion to what I accomplished. I'm going to run a bath (at 12:30 am) and hope for some relief. I feel like I'm going crazy with it, like I'm trapped in a burning house and I can't leave, but I can't douse the flames. Please, please, please let it stop. I'm so tired and so utterly unable to rest.

[Simone_Holly]

I'm really sorry to hear how awful you're feeling. Nights like that are the worst, they last forever and its hard to picture a time when things will change, but hopefully they will. Are you able to see your nurse for some guidance at all? Baths are a good idea, I hope it helped and you have a better day today x

[Victoria-NRAS Partner Moderator NRAS]

Hi Azabat

I'm so sorry to hear that and hope the bath helped and that you eventually managed to get some sleep. It sounds like a nasty flare, so probably good to contact your rheumatology nurse if you can. Unfortunately these things often feel worst at night, which seems particularly cruel because then it's hard to sleep.

I'm sure you probably know what works best for you during a flare. Some people find cold packs help, some prefer warm ones. Resting inflamed joints can help and obviously painkillers and anti-inflammatories if you are okay to take them. You might need to speak to your doctor if it seems like you might need something stronger. Also, when a bath isn't possible, soaking joints such as feet and hands in water can help.

I hope you're feeling better very soon.

Victoria

(NRAS)

[Azabat in reply to Victoria-NRAS]

Hi Victoria. I did eventually sleep, but I was too afraid of getting into and out of the bath to run one. Next time I will soak my hands and feet - thanks for the suggestion. I do see my gp tomorrow, and we'll talk about painkillers and anti-inflammatories. I'm not scheduled to see my rheumy until late June, but I can call the office. I'm still extremely sore this morning, but I hope I'm feeling better soon too! -Bats

[Jora]

Poor Bats. Unfortunately, fairness isn't part of the package.

If you can get into a hot bath ( with help if necessary) that's good. I find that helpful. I bung in Epsom salts and lavender and have a good long soak. Then I drain the bath by 50% gradually adding more cold before clambering out . This means I'm less dizzy when I stand up. I have a rubber mat in the bath to give me grip and gradually inch myself backwards up the slope. It works in my case as there is a tiled area at the back of the bath, but it might not work for everyone. When I have a bad flare, I can't have a bath and even getting into the shower is problematic. Sometimes I just have to use baby wipes as I lie on the bed (I won't tell you how many I use!)

I listen to the Dali Lama's healing chant. I'll post a link in a separate post. I'm on my iPad so will lose this if I get the link right now. Sleep might still be elusive, but it improves the quality of the insomnia.

I don't know what sleeping pills you are taking, but if it's the sort that is addictive, then you would need more and more to maintain effectiveness, unfortunately. I eventually came off mine , but take 40-60mg Amitriptalyne, together with codeine about an hour before turning out the light. This drug helps alleviate pain and is a mild antidepressant ( though the therapeutic dose as an A-D is probably over 100mg). I feel groggy in the morning, but I do anyway. Jo xx

[Azabat in reply to Jora]

Jo, I was too scared of having to get out of the bath to get in, but I used some of my essential oil blend (lavender, frankincense, and clary sage) on my hands and temples and that helped me drift off. I'll try today when I'm sure of having some help if I need it. My bath has a grab bar, but when my hands hurt so much a bar isn't all that helpful. I've been taking zopiclone lately for sleep, but I've been on a low dose of amitriptalyne for years (brain injury is notorious for sleep disturbance). Zopiclone is habit forming, so I've been trying to take it only when I need it. Unfortunately, the days I need it far out-number the ones I don't. I finally took some of my OTC acetaminophen with codeine, so my stomach is very displeased, but at least I got a few hours' sleep. I see the psychiatrist this morning, so I'll ask him about sleep meds. I'll look up the healing chant again, and see if I can play it on my phone. Every little bit helps, eh? xxMaryBats

[nomoreheels]

I posted earlier this morning but it's disappeared, reading Jo's reply brought me back here as I also said that amitriptyline helps me rest enough to go to sleep. Anyhow, I know how long nights can be when in pain Bat, silly o'clock isn't good o'clock in my book & really feel for you. Do you not have a Rheumy appointment any time soon? It does sound as though you're needing some help, that much hurt needs sorting. x

[lfu2]

Hi Azabat,

It's bad when you can't sleep, for whatever reason. This is an exercise I use when in that situation. However I find it is essential to manage the pain first; pain and relaxation are not natural partners.

1. Close your mouth and inhale through your nose for 4 seconds (counting one one thousand, two one thousand etc).

2. Hold your breath for 7 seconds then exhale through your mouth, taking 8 seconds to exhale completely.

3. Repeat 3-4 times and try to be accurate with the counting.

I have found that it does calm me down at any time of the day, and in bed it usually helps me drop off.

Take care.

[summer32]

I have had times like this the bath helps a bit, have you discussed pain relief with any one?, for bad times I use oramorph

[Azabat in reply to summer32]

I'll be seeing my gp tomorrow. When I was in hospital they gave me dilaudid, and it helped so very much. It's a narcotic, and I have a sort of built-in resistance to taking them, but I'm becoming less willing and able to deal with the pain instead. I think I'm going to ask for a small script for the times when it's unbearable (at least while we wait to see if the sulfa helps).

[summer32]

Are you from outside the uk?that is hydromorphone in the uk.. a moderately strong opiate, oramorph is morphine sulphate a weaker opiate, you have had some strong stuff given you!

[Azabat]

Yes, I'm Canadian. I think I'd be happy with moderately strong just so long as it helps!