Sleeping in Recliner.... not sleeping well

[bloggymom]

I have horrible acid reflux and it gets down into my lungs. My doc said I need to sleep in the recliner. I have been doing so for over 6 months. I am in horrible pain from that recliner. It is firm but soft and... miserable. My legs cramp all through the night. My back is a total mess (I am seeing a spine doc next week for the pain) and even my arms go numb during the night.

I have tried sleeping in bed with lots of pillows. I slide down all night long until I am flat. Have tried sleeping with numerous pillows. We have tried all sorts of pillows... soft one and firm ones. I have to sleep at greater than 30 degrees (almost sitting up).

I get uncovered during the night and my joints end up cold and stiff.

I have cuddled with my husband at night in our bed and my back feels great... the acid reflux does not. The acid reflux contributed to the hole in my lung. Lying flat is the only way my back feels good at the present time.

I am at my wits end. I am exhausted from lack of sleep and my morning blood sugars are horrible as I am not getting good sleep.

I am concerned that that spine doc is not going to agree with lung doc on the sleeping in the chair. I am also looking at getting hip surgery and am not sure I will be able to get in and out of the recliner (it is deep and I am quite petite).

HELP!!! My husband and I feel like we have tried everything and are both frustrated. Our marriage is suffering because we no longer sleep together.

 

[moxie1]

Look up inclined bed therapy. You can put your headboard on risers so that the whole bed is inclined, yet your back will be helped because you are sort of still lying flat. My husband and I are currently trying this because he snores and this supposedly helps.

 

[Melissa75]

Have you looked into that nissen funduplication surgery?

I have been disobeying the recommendation of Nat'l Jewish for several years, but my reflux is likely not as bad as yours. They told me to buy an adjustable bed because of "spontaneous high grade reflux" and some "second wave" something. Like you I tried pillows instead and hated how my body (and my lungs too) felt. The mucus felt cemented in my lower lobes when I slept like that and my hips hurt and I got a yeast infection from my crotch being squished in one place all night.

Definitely try Moxie1's advice of putting stuff under the feet at the head of your bed.

 

[sugarcookie]

Do you take anything for your reflux? I suffered for years with that debilitating pain and then started taking lansoprazole (prevacid) BID and have no more pain. Thank goodness.

 

[JORDYSMOM]

You didn't mention any meds, but I hope you are on something for the reflux. I know that even with meds mine sometimes gets way out of control. Restricting my diet helps some. You may be forced to consider the nissen surgery. I considered it for some time, but decided against it for me. We did buy a sleep number bed with the adjustable frame. Saved my life! I have chronic back and joint pain too, so it helped with that as well. Being able to comfortably adjust my head and legs without hurting my hips and back has been wonderful.

I hope you find a solution, because not sleeping well will definitely cause so many problems.

Stacey

 

[LittleLab4CF]

Everyone has hit what I suggest. GERD, reflux and aspirations used to be my hallmarks. A middle ground might be a bed wedge, I prefer blocking up our headboard since we're side sleepers.

Protonix and Dexilant are proton pump inhibitors. The stomach acid production is reduced. Many CFers have or develop classic gastritis and gastritis drugs work well. I took Protonix at double the regular maximum an now Dexilant 60mg an hour before bedtime. I then take Zantac 150 at bedtime. This is all done under my GI doc's direction. When all this fails, if I have a sour stomach at bedtime or awake in the night with reflux or GERD, the chewable generic for Pepsid Complete soothes and stops it. Pepsid Complete is a good dose of antacid and Pepsid's fomatadine (sp?) That was dropped and by popular demand, Walgreens and Rite Aid among other stores carry a store brand.

I am somewhat surprised more discussion about GERD and asperation doesn't happen. I have not solved all my GERD but my four average hospitalizations per year coincidentally stopped when my GI doc started me on the above regiment. Considering your misery, I would go with Dexilant 60mg and a morning as well as bedtime Zantac 150. I was automatically put on Dexilant 60mg. When I suggested 30mg he told me if I wanted to play with lower doses, it could be done after the GERD was controlled.

I hope I didn't just repeat stuff you already know. Adult GI doctors are not particularly up on CF but GERD and Gastritis are treated the same regardless.

Enough heartburn to power light rail,

LL

 

[bloggymom]

I am allergic to most of those meds. Going to try Zantac again (only one I am not allergic to).

Getting a CT-scan of my digestive system so should have answers soon.

 

[LittleLab4CF]

Bloggymom,

I wasn't thrilled with Protonix, but Dexilant 30mg standard dosing and my 60mg maximum regular dosing works well. If proton pump inhibitors are not practical, GERD and gastritis have been managed a long time and effective management you are ok with should be available. Most GERD/gastritis medicines I took by prescription are OTC today, like Zantac. Any protocol from about 1980 on treats as well as the current generation of PPI's and such.

I do mean a protocol, GERD that hasn't been resolved so far with medicines is very serious. Realizing a recliner is the closest thing to a failed treatment, I would be a little cranky and looking for help. I know surgeries have been transforming but a degree of management is needed to prevent it re-occurring. The best tolerable acid reducer probably at the maximum labelled dose. A prescription dose of an OTC acid reducer maybe double the OTC label so if you find one, ask your GI doctor. This may be a point. CFGI doctors are rare but GI problems are treated the same way. A GI doctor will know alternative GERD management, one you likely will tolerate and respond well to.

Don't shoot me, but many CFer's have emotions directly connected to nerves to the gut. Any chance something beyond the usual on your mind, or maybe an accumulation of the usual is upsetting? Ok,that's answered, I really would like to help and medicines from acid reducers to antacids, half a dozen drug families have been effective for the past thirty some years. You won't find Dexilant in China but they have Pepsid AC and most older drugs.

If anybody wants to know some historical protocols, like an Pepsid AC for acid, Gaviscon for heartburn and bentyl for stomach cramps. The latest and greatest is really just the latest. Other drugs were great and for the most part remain so. Zantac deals with a simpler mechansm than Protonix and so on. I and most older CFers have been through it all so I can research effective GERD protocols that were effective from say 1980 on.

LL

 

[bloggymom]

I am getting an extensive CT scan with dye contrast and chalk drink. Doctor is going to check for hernias and abnormalities/scaring from previous surgeries. I am also going through the early stages of "the change"... my body is in huge stage of stress. Hoping to find out soon. Tried sleeping in bed all propped up and had acid reflux. I guess the chair is the lesser of the evils.

 

[LittleLab4CF]

An upper GI CT w/contrast is a good idea, but it seems a little low in the GI tract. I am curious, my GI doc scopes me down through the duodenum, rather than relying on a CT. Sometimes a CT follows if he sees something that could have more within the structure of the pyloric valve for example. You didn't mention prior surgeries in your post and that concerns me. GI surgeries for what, if you don't mind answering? Keep me informed please, this is vexing.

LL

 

[bloggymom]

No... I am having an entire GI with contrast (from my neck to the bottom of my pelvis). I have had a gall bladder surgery that we are not convinced it went as well as planned and I had a C-section. They are looking for scaring, hidden hernias, growths on my digestive organs and the such. It will be a test that an GI doc can use if need be. We are trying to explore things without having to cut. I was born premature and things may not be quite right inside (not to mentions CF issues). (I have esophogus issues that are not fully diagnosed). I have had all the necessary blood work so they are looking for things that bloodwork won't tell them. My doc is a surgeon so we wants to do all he can before he make one tiny incision.

 

[LittleLab4CF]

Thanks for clarifying. Full term babies don't have complete GI tracts so a premie, it could be a mess. Along with your C section, if your gallbladder was trimmed from the wrong duct, you could have problems the rest of your life.

GERD is most often from the stomach to the top of the throat. Either your pyloric valve is acting up or your stomach. This is one you must have heard 20 times but eat no less than four hours before sleeping. This is everything except water. Medicines should be given an hour before bed.

Please let me know what you discover,

LL