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    • #22668
      Andrea
      Participant

      I’m looking for suggestions of how to sleep comfortably without moving around similar to hands on a clock.

      If I try to lay on my right hip I have pain, so then I try my left hip and pain again, laying on my back with a couple of pillows is sort of comfortable with a couple of ice packs and another one just below the pillows for my shoulder area that has pain from trying to lay on my sides.

      I have pulmonary arterial hypertension and don’t know of anyone where I live to swap stories with. This illness makes me skinny that I feel anorexic even though I am not. I have tried sleeping on my stomach for a few minutes and this to provides some comfort. I have laid on the sofa in my home and also on a recliner chair and a zero gravity chair and have an idea of trying to sleep standing up like horses do to see if this works.

      Any suggestions are greatly appreciated.

      Thanks, Andrea

    • #22675
      Brittany Foster
      Keymaster

      @blessingndisguise2016 Thank you for sharing your story with us. I am also pretty thin due to co-existing GI complications and slow moltility. I have feeding tubes in my stomach and into my intestine to get better nourishment. Like you, I have a lot of hip pain when I am sleeping and often feel like I am sleeping on cement when I try to sleep on my side. This ends up hurting me even through the day. I am using oxygen therapy and recently had to increase it because my levels were dropping too much with activity at my normal amount of oxygen that I use. For sleep, I have been given medication to help me sleep like a fast acting anxiety med like ativan. This helps on the nights when I really feel restless. It also helps me to have heat on the areas of pain. I swear by Therma Care brand heat wraps. They have them usually at a CVS or other pharmacy and even a WalMart. I get the back wraps in the large size because it wraps pretty much around my entire waist. Having that does help. I also have invested in some good body pillows and making the bed extra soft by adding a feather topper (or two) underneath the fitted sheet. I just buy a bigger fitted sheet so that it can go over both of the downfeather toppers for the bed.

    • #22709
      Rebecca Talkie
      Participant

      I have newly diagnosed PAH. Sleep has been an issue for me for a long time. Because of back issues, I too cannot sleep on either side without severe pain. I sleep on my back all night. I have a foam topper on my bed but am just about ready to switch to one of those expensive microfoam beds. At least they have come down in price since I first looked at them. Anyway, I have to wonder how much your sleep difficulties are due to undiagnosed sleep apnea. Have you ever been tested for it? I now sleep like a baby, but on my back, since I was found to have sleep apnea. Being on C-Pap can also help with the PAH. I nap in a normal Lazy-Boy rocker/recliner. My Sleep CNP wants me to use the C-Pap there too but it is a pain in the butt to move it. I do take a pain pill at night and I think that helps me get into a deep sleep to start with. Good luck finding the answer that helps you.

    • #22715
      Gayle Meagher
      Participant

      I agree the cpap is a pain to move; but so worth it to get a good nap. I sometimes just sleep in the recliner at night bc I have to prop up so much. When I prop up in the bed; it puts me on my tail bone which gets uncomfortable after a while.

    • #22725
      Brittany Foster
      Keymaster

      Rebecca,

      I know exactly what you mean with the CPAP. That was a good call on your part to think about sleep apnea as a cause of worsening sleep patterns. I had terrible sleep and was diagnosed with central apnea. I haven’t been able to use the bipap machine for it that i have because I have pretty severe dysmotility of the esophagus and a lot of reflux caused by a heart surgeey in May. It is such another problem that I can’t wear it though and really causes me issues. Especially with mood and tiredness during the day. When I was able to wear it I was a lot better.

    • #22726
      Brittany Foster
      Keymaster

      Gayle,

      I could see how this would cause a lot of issues with the back. I’m sure you don’t want to deal with other pains (literally) than the ones that you are already managing. I’m glad that you have something else to sleep in though, the recliners or reclining beds can be good but sometimes even the sitting puts more pressure on my spine

    • #22733
      Colleen Steele
      Keymaster

      My husband has used CPap for many years and swears by it. He claims it didn’t just improve his quality of sleep but he noticed he stopped experiencing acid reflux and migraines aren’t as big of an issue as they once were.

    • #22756
      Jimi Mcintosh
      Participant

      I have had extreme difficulty sleeping for the past 9 years, bad knee, 2 herniated lumbar disc, 2 hip replacements. Tried new mattresses, foam toppers, weighed blanket, sleep medication, 4-6 pillows. Formerly tried sleeping aids, medication and developed PTSD, fears of overdosing, fears of over sedating.

      I now use a CPAP,oxygen, a firm pillow between knees and back sleeping. I find that a cooler room and allowing fan provides some relief. Awake every morning with fluid in legs, face and hands. Finally got a pulmonologist that wants to replace CPAP AND mask, plus a CB possible adjustable bed

      If you can get a script for fentanyl 50-100 mcg, it ease the anxiety and pain for 3 days, much better than spinal injections

    • #22765
      Brittany Foster
      Keymaster

      @colleensteele interesting that you say this about the reflux. I was told NOT to wear the bipap that I have because of the reflux issue especially if things are being caught in my throat for aspiration risk, but the more they are learning about it, my doctors yesterday for GI told me that it actually could improve the reflux. I see my pulmonary doctor tomorrow so I will be sure to ask him about it. But I know that I am going to need to get back on this.

    • #22766
      Brittany Foster
      Keymaster

      Hi Jimi,

      I am glad that you found something that is working for you. Especially for your pain relief. I know how hard it is to have pain keep you up like that in the middle of the night and make you toss and turn. It’s not a fun place to be. I can understand your fears of overdose and PTSD from medications. I have been heavily dosed before for sedation after surgeries and my breathing really stopped and my whole body started convulsing as if I was having a seizure. I am looking to now get on something to help with the convulsions and the anxiety/ depression at the same time. I will be talking with my neuro about it next week to see what she recommends.

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