Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

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/ Polycystic Kidney Disease (PKD) Support Group

PKD and Upper back Pain???

deleted_user
deleted_user
Hi all~ I have a question here, I have PKD and My kidneys are about 6 times the normal size to my understanding.. They are very big and have well over a 100 cyst in them, which most of you have as well i'm sure so anyhow just wanting to know if any of you get the upper back pain that is located under shoulder blade and sometimes in betweeen shoulder blades? I have had this pain now for about 2 weeks straight it does not hurt when i yawn, sneeze, breathe, of cough... I can't figure out where it's coming from. I have been to my regular Physician 3 times in last week, he sent me in for ultra sound of abdomen and Hida scan for gall bladder and did blood work all came back normal well except for all my kidney and couple liver cyst.. I keep telling my doctor it feels like its pain in my lungs and he says it's not that it could be my kidneys being large and pushing on my daiphram which is causing this pain... I also have GERDS and occasional chest pain. This pain in upper back is like a nagging pain that is pretty constant, It does not hurt while i'm sleeping or anything and sometimes runs down my right arm, mostly the dull achiness is located right under the right shoulder blade. I do have the lower back pain which is in the flank area but have had this pain for along time due to kidneys..

Can Anyone relate or have any of these things going on???
deleted_user
deleted_user
Since the pain runs down your arm...maybe the cysts are pressing against a nerve? Ask your doctor if a physical therapist can help you with some exercises or posture correction. I injured my back recently and the treatments really helped. I do regular exercises specifically for me.I work on my posture too. I do have the cysts pressing against the diaphram so good posture and body mechanics when lifting helps. Go to a health care professional that understands the nerves and pain.
deleted_user
deleted_user
I visited a chiropractor but I think a physical therapist may be helpful as well.
deleted_user
deleted_user
not every pain is related to PKD but in this case I'm wondering about your posture. slouching for any reason can cause upper back pain. if that is the case, the reason for slouching may be from PKD.
just a shot in the dark.
LHanley
LHanley
Computer work can also get you between the shoulder blades. My chiropractor takes care of that - he's very careful not to exert pressure in the region of my kidneys.
Lisa H
Chewitt
Chewitt
I have this, and it does interfere with sleep for me. I also have wrist pain on the same side. I've seen numerous doctors, had nerve conduction tests, seen the chiropractor and had physiotherapy. Nothing has helped. The conclusion seems to be that it is probably posture related, owing to my huge abdomen (massive kidneys and liver) and that I should take paracetemol! Of course, that doesn't help at all. The rheumatologist suggested swimming, but I can barely swim, and there's no way I'm exposing my body! I've resigned myself to the fact that it's just another pain that I have to live with. Lisa is right, using the computer exacerbates it, so I try not to overdo it with the keyboard/mouse.

I use a cherry stone neck warmer that you heat in the microwave, which gives a little relief. I bought a massage cushion, but it was practically impossible to position it where it needs to be.

Good luck, and let me know if you find anything that helps.

Chewitt
deleted_user
deleted_user
I'm having the same problem but mine started with heavy chest and breathing problems so doc sent me to a heart doc where I found out i have an enlarged heart on the right side and some fluid also the shakes and now my back is killing me so going thru all kinds of test with the lung doctor.I do have PKD also on liver.I've been to alot of doctors,ER,Scans and know one can figure this out, its been 6 months.Its getting frustrating waiting around.I', waiting for results of a VQ scan with show blockages in the lungs.Is this all related to PKD???Celine if they figure it out for you let me know OK!
rogerjd
rogerjd
I initially read your post and thought that it didn't really apply to me although I hdo have large kidneys , large liver a GERD. Recently in last two weeks I have started to get very painful constant pain in my upperback all across from shoulder to shoulder, and the pain does go into my shoulders and down my arms. This pain has been quite debilitating for me and whilst I do not usually use pain killers for my usual pains, I have had to stat constantly medicated which means constantly drowsy laid up in bed due to this pain. I know it dounds like posture from my own experience I have not stood for any length of time or walked anywhere as I have been in hospital for a good wfew eeeks and then on bed rest. I mam planning to mention this next time I go and mention how severe this pain is. P.s My diaphragm is being crushed as this can be seen on my chest xray but this has been happening for a few motnhs now and the pain has only started in last two weeks. I'll let you know how I get on appoint- next 2 weeks
rogerjd
rogerjd
I went for my appointment and told my renal consultant about the upper back pain which seems to be getting worse and is daily. She didn't really provide any explanation for it but prescribed me oxycodone. I have been taking these and whilst the pain does not completely go away it does help a lot. My concern though is that as soon as they wear off the pain is there it goes up into the right side of my neck and causes ear ache in my right ear? I am having a double neophrectomy at beginning of November and was hoping that this would be my pain issue over with (although this is for suspected cancer also) but my renal consultant has advised that she does not think my upper back pain will go away after this operation. How depressing? It's now started me thinking about whether they viewed my upper back on all the scans that I had done prior to the diagnosis of renal cancer suspicion. I am seeing urologist on 6th October and will ask him straight whether there could be 'something else' causing the pain in my upper back. I don't want him to hink I'm a hyperchondriach(spellcheck?) though.The pain gets so fierce that it can't just be related to my polycystic liver- it's only really started recently.
collectm
collectm
There is a great article that I read on the internet, 100 things your doctor will never tell you about your pkd, and in it was where I read that if you have pain in your shoulder, then the cysts have spread to your liver. I have the same problem and have had it for approx. 1 year now. At first I thought it was arthritis but a scan with dye did not detect anything. I have found that eating greens and green shakes first thing in the morning do help with the inflamation and therefore the pain in the shoulder. But you have to drink them every day in the mornings. I cannot lift my arm above my shoulder and it hurts to sleep in certain positions causing me to wake up several times a night. I initially did the green shakes when I thought it was arthritis and it helped so I just kept drinking them when I was diagnosed with PKD. My pain is in the left shoulder. I hope this helps you.
Chewitt
Chewitt
Collectm,

You are most likely to have pain in your right shoulder if you have a very enlarged, cystic liver. Your liver is on the right. I do have some referred pain in my shoulder from my liver, but I also have shoulder pain which I know is not from the liver. I have postural problems because of the enormous size of my abdomen, and this posture causes a multitude of problems with pain. What you describe sounds like a muscular or other soft tissue issue eg with the rotator cuff. If your shakes help with the inflammation, carry on with them. What's in them?