It has only come on over the last couple of weeks but it is an annoying dull ache at the shoulder and it gets worse when I go to bed. It sometimes shoots down my upper arm giving me an uncomfortable pain.
It doesn't stop me doing things, I do archery and can still hold my bow, it is just uncomfortable.
Could be nodes, there are a lot in the arm pit area...they sometimes press on nerves, left side is also the spleen location, but it feels more like a dull ache similar to a bruised rib...
Certainly something you need to bring to the attention of your doctor, sooner rather than later...
~chris
Ah yes hadn't considered that. This would be my first real symptom surfacing if that is the case, apart from getting tired al the time. It is definitely shoulder and upper arm and not ribs so a swollen Lymph node pressing against a nerve would be a good explanation. feels skeletal rather than muscular.
Any tips on checking for swollen nodes?
Guess I need to make an appointment to see the doc.
Kirk
I've had shoulder pain for some time and an amazed how many people with CLL report pain in this area.
Could be a whole host of things not necessarily related to the CLL Kirk. With my husband, it was the result of starting statins which are notorious for creating muscular problems.
The fact that you use an archery bow may indicate over use in the area causing tennis elbow, frozen shoulder etc. Possibly even degenerative changes in the neck region.
With me I reckon it's arthritic changes and tension in the muscles doesn't help. Have you had a CT scan since dx?
Sounds like a visit to the doc is in order (but if he's anything like mine you'll be sent away with painkillers and anti-inflammatories). Hope you get it sorted.
Newdawn
I had this a few years ago and it was really painful, it was my left shoulder up to the left side of my neck, I was told that it was a cold shoulder, and that I should exercise it .... I found that by stretching and twisting my shoulder/neck muscles .... arms above my head, ie stretching/ twisting the muscles into the painful positions that I finally managed to be rid of it.
footnote: ( my swollen nodes are on the left side of my neck, and in my left side armpit ) whether it was related to the pain I have no idea.
Hi I too have this type of pain. Sometimes I think these types of symtoms (not life threatening) are not treated enough and are too easily dismissed. Its good to know others are in the same boat ( although sometimes I think we wish we weren't in the boat at all)
Me too. They are most likely symptoms. I also get little pains in my ribs now and then. As for the boat, I wish it were a cruise to the Bahamas instead of to the treatment center. I'm still on watch and wait but treatment is in my future.
Hi Kirk
Yes me too it came on four weeks ago just before I started treatment,it is my right shoulder but there is a little in my left also. My GP said take a pain killer like paracetamol or if it is very bad Tramodol. diclofenic should work best but don't take it for too long or you will get stomach ulcers. I asked my CLL trial doctor about it and was told it is unrelated and I am probably doing something with my shoulder/arm that I was'nt. Thinking about it four weeks ago walking miles around hospitals I started using two walking sticks instead of just one in my left hand. Mentioning it to my wife she has developed the same problem recently with no real reason for it, perhaps it is just old age creeping on, at night I lie on my right side my wife on her left perhaps that's it but I think it is safe to say it is not CLL related, I will ask again when I return to hospital on Monday and let you know if there is a possibility. I'm afraid we all seem to examine every symptom we have and wonder and I've got lots of them that have come on since I started treatment but so far I'm told they are all unrelated by my trial doctor.
Berrytog
Thanks all for the replies,
I have had a good root around and cannot find any swelling or lumps in my arm pit so I will give it a couple of weeks rest to see if it is a strain then go to see the doc if it doesn't get any better.
It seems from the replies that doctors don't take our complaints seriously enough there appears to be little understanding of CLL amongst them. I had a letter from my Haematologist this week answering a question I asked and in it he states CLL is a rare disease!! Not if the amount of people on here and Macmillans and the newly diagnosed joining on a regular basis is anything to go by
Take care all, flu jabs for me today. Kirk
CLL is absolutely a rare cancer, in fact the only cancer designated under the U.S. Therapeutics for Rare and Neglected Diseases, program.
It is also classified an 'orphan disease' by the FDA and the EU. This gives pharma companies special market protection and tax breaks etc...
ncats.nih.gov/research/rare...
A very small percent of CLL patients or caregivers actually ever go on line... the median age for diagnosis is 71 years, generally the internet isn't big with the older crowd... this is slowly changing ...
That's really useful Chris (as always). I once calculated the statistical risk of developing CLL as a 54 yr old female and the results were infintesible! Wish I'd kept the results which were based on stats published somewhere. Maybe others know.
What stood out for me was somebody saying I could stand in a packed Wembley Stadium and the chance of someone else there having CLL was very remote!
And yet some of our GP's still pretend to be on the ball with it when many never come across a patient!
Talking of this being designated as a rare and neglected disease by the US, does anyone know what's happened to the programme started and funded by the States (named after some kind of Star Wars type name?) in which CLL was selected as a target cancer for intensive research? Anyone know what I'm referring to? It sounded so promising. I think there's only 6 types of cancer selected for the programme.
Newdawn
Would that be the Moon Shot program you are referring to?
MD Anderson Cancer Centre CLL Moon Shot Program:
Hmmm I guess it seems more prevalent because we are a concentrated group of sufferers. I have to admit it is something I hadn't heard of until I was diagnosed and read up on it.
Maybe the GP's should listen to us as subject matter experts 
Yes that's the very one Neil, knew it had a space related name! Thanks for the info.
Hope it's making progress and getting somewhere!
Newdawn
Hello pitbull.Its interesting to find this site on Google to discover someone who went through the same symptoms that I am now having.From the 13 replies you have had your symptoms seem to be the closest to mine - a dull ache in my left shoulder which gets worse when I go to bed.I would like to know if you ever got it sorted out? What actually did you take or do? I have been to the doctor who prescribed 1 week of codamol tablets.Great relief during the day,but still little sleep at bedtime.Now that the tablets are finished and still not pain-free I may need to return to the doctor.
As I mentioned earlier, statins can be associated with muscular problems. If anyone is on them and has started with this problem, worth a chat with the doctor in case they are implicated. Certainly was in my husband's case.
According to Professor Flemming Dela from the Center for Healthy Aging at the University of Copenhagen:
"A well-known side effect of statin therapy is muscle pain. Up to 75 per cent of the physically active patients undergoing treatment for high cholesterol experience pain. This may keep people away from either taking their medicine or from taking exercise - both of which are bad choices. We have now shown that statin treatment affects the energy production in muscles. We are working on the assumption that this can be the direct cause of muscle weakness and pain in the patients."
Newdawn
I have had a pain in my left arm/ shoulder for some time now. It is gradually disappearing but 2 months ago I went to
see my GP. I didn't think it was CLL related even though I was diagnosed 5 1/2 years ago and still on Watch and wait.
He thought it was heart problems and sent me to the Cardiac Dept of the local hospital for an ECG. I saw a nurse/practioner there and when I mentioned that it was more intense during exercise he sent me for a Stress/Echocardiagram in another hospital. They have not found any cardiac problems but I am going to mention it to my haematologists when I see them next week. I think it most likely that I pulled a muscle during exercise
Hi all,
Well I must admit that I have not had any left shoulder pain in recent weeks. However I haven't done any Archery since November because I came off my Motorbike and have residual pain in my right shoulder which is preventing me form doing it!! So I am guessing the problem was indeed caused by the archery. I will keep an eye on it when I start again to see if it recurs.
Kirk
I am convinced my CLL first started with a serious pain in my left shoulder during a round of golf. It still aches and prevents me lifting things above shoulder height. I have completed treatment over two years ago and pain persists. My consultant and GP both say it is not connected with CLL. Old age/arthritis/old rugby injuries probably resposible.
Keep it moving with exercise and stretches.
Foolish
my pain in the shoulder radiating up from my upper left abdomen/lower thorax I interpreted as being caused by my enlarged spleen. It was the pain caused by my enlarged spleen that sent me to the GP. The enlargement came to notice about 2 days after my flu jab! My haematologist said that would probably do it, the immuno assault caused could very well cause the spleen to enlarge with excessive whitecells. The pain was treated with co-codamol whilst I was waiting for FCR to start. I've had FC and R will start at my 2nd treatment but my spleen has reduced and I don't get the pain any more. To be the shoulder pain has to be directly caused by the spleen/lymphatic enlargement. BUT WHAT DO I KNOW!
Not all pain is CLL related but that's what we tend to think . I am currently being treated for a frozen shoulder/bicep tendinitis/rotator cuff tendinitis. I was certain it was related to CLL but an MRI showed different. Get it checked out by an Orthopedic specialist.
I have just had my latest blood count and my platelets are 130. Should I be worried? I have read that the normal count is 130-400.
Should I be worried that my platelet count in last 6 months hasn't got higher than 127,000?
What is Cellulitis? 
No 11q or 17p deletion 
Enlarged spleen and high cost of calquence 
