I really feel in the wars this past few months. In particular I am suffering daily with very severe shoulder pain that is driving me barmy. It strikes at any moment in the scapula as if I am being stabbed half a dozen times. Standing when out is a real problem as standing/carrying any bag makes it worse. Where once I could control the pain by sitting down and taking a dose of Solpadol etc., it has got to the point since November that just moving when sitting down or even turning in bed can jar the shoulder and cause the stabbing shooting pain for much longer periods than ever before.

What with the recent diagnosis of the underactive thyroid and this scapular pain it is all making me feel weepy. I don't feel I am depressed but I do feel the pain and the thyroid problem are probably making me very emotional. Talk about grumpy men I'm very much feeling a grumpy woman. If there is one thing I have discovered in the past 5 years its that pain can be so all consuming of the mind. everything else is minor by comparison.

Just wondering if anyone else is experiencing post radiotherapy problems like this. Are there many long term (or shorter term)sufferers out there who have or are experiencing this debilitating radiation induced shoulder pain. My GP says its radiation induced scarring which can trap nerves.
Pain killers have some effect, but not a major effect in alleviating it. I am also taking ibuprofen and using capsaicin (chillies) cream.

Anyone any ideas on any special injections or the like?

This message has been edited. Last edited by: Dr Vinod K Joshi,

Pauline,

My left shoulder is stiff, and I have difficulty in lifting heavy weights and raising my arm up above my head. My GP suggested stretching the tendons by leaning against a wall with my arm up. I asked my consultants about the problem, as it is on my right side, and it was the left side that had the treatment. The radiology consultant said that it was caused by the exit beam of the radiotherapy.I suggested physiotherapy and the consultants said that they would like me to try swimming first, as general excercise for the shoulder. I'm not sure if that would be any use to you, as if the pain strikes suddenly and is really painful you might not be able to carry on swimming. I realise now that I have had problems with both shoulders all along, as I used to find it really hard to dry my hair holding the hairdryer in one hand and a brush in the other. I bought a lightweight hairdryer with a brush attachment so that I only had to use one arm. As I didn't have a lot of hair it dried quite quickly!


I'm off for a swim now to see if it helps. I know that lifting heavy shopping bags out of the car doesn't, so I get my husband or son to carry in those for me.

I saw a new cream advertised on TV last night called voltarol. I think this contains the same ingredient as voltarol tablets, which I was prescribed after I had my tonsils out. I know my father also takes these tablets for knee problems, so the cream may be helpful in shoulder pain (if you can get someone to put it on for you). If the problem is due to trapped nerves, then taking anti-inflammatory drugs should help to reduce the swelling, and allow the nerve to return to its normal place. I need to do this when I suffer from sciatica (a trapped nerve that leads to the legs), and I take the anti-inflammatory drugs for 2-3 days regularly to reduce the swelling until the nerve pops back into place (and I can hear it go pop).

I'm not sure if this will be any help. I don't think I'm suffering nearly as much as you are at the moment. I hope that someone comes up with a suggestion that helps you.

Jenni

Ah Jenni I think it's just comforting to hear one is not alone on the shoulder pain. In fact what is making it worse is lifting my arm to do something like remove clothing or put it on. I did have a Swedish massage in November and the beautician said you are very knotty here (in the pain area) and pummelled it forever. GP said she probably disturbed the radiation induced scar tissue. This is so annoying as I had had 6 months or so with minimal pain by comparison and just thought how good I felt in Nov and how nice it would be to have a massage!

I'm sorry to hear you have pain too, but glad you have developed your own coping stategy. I think that is what we must do - develop coping strategies. It is the price we pay when we have the radiotherapy. I think on philosophical days I can cope with it, it's on days when it gets you down that it's hard to handle. I have hardly worked at the pc for 6 weeks, but have pushed myself through the pain barrier in the past week preparing for my Mum's 90th birthday party, knowing there was only one day to do this event. Thankfully it was a hugely successful day and if nothing else I am encouraged by Mum's longevity!

I think I am with you on the lifting heavy weights and to think I used to lift a bar bell with ease 15 years ago.

'..The radiology consultant said that it was caused by the exit beam of the radiotherapy.I suggested physiotherapy and the consultants said that they would like me to try swimming first, as general excercise for the shoulder. I'm not sure if that would be any use to you, as if the pain strikes suddenly and is really painful you might not be able to carry on swimming.'

My GP was not keen on the idea of anyone touching it with further massage/chiro or physio work. My impression was that he thought with time it might settle back down. But I suspect with the slog of the prep for the 90th party I may not have given it the best chance. Main problem here with your solution is that I cannot swim. I never liked it as I found it too energetic. I like stationary exercise if you get my drift like pumping iron, but can't seem to do that either without problems these days! But swimming may be good for those who can do it.

'... I used to find it really hard to dry my hair holding the hairdryer in one hand and a brush in the other. I bought a lightweight hairdryer with a brush attachment so that I only had to use one arm. As I didn't have a lot of hair it dried quite quickly!'

Yes this is a real problem for me right now. Some time ago I bought a lightweight travel type dryer from Boots which is much better than my old hairdrier weight wise.

'...I know that lifting heavy shopping bags out of the car doesn't, so I get my husband or son to carry in those for me.'

Yes I do that too, but its tempting to lift stuff when it needs doing. Sometimes I also feel as if I am putting on my husband expecting him to lift things all the time. I have had to switch from a large handbag to a quite small bag as just the weight of my bag before all the junk I put in it was heavy. Even the small handbag includes the essential medicines/biotene gel/small water bottle etc. I haven't even done the sales this year!

'... anti-inflammatory...'
Well I have just started to take my ibuprofen a few days ago. I had stopped taking them some time ago as the reflux was made worse by them, but I am being extra careful this time making sure I have already taking the omerparozole, had food and also had some Gaviscon. This seems to be helping them reduce possible irritation. I have taking them since the 1980s for cervical spondylosis and only this year did they start to give me (additional to Rads) reflux problems. I think I may have been careless with not having food with them. I am seeing the consultant next week so maybe he can shed some light on it.

I have noticed that that the packaging with the thyroxin says 'can cause muscle cramps' and wondered if anyone had a contraindication like this with levothyroxine.

Thank you Jenni for your reply.

Pauline,

A fashion guru like you needs lots of bags. I bought a few different small bags when I had sciatica, as I couldn't carry the heavy ones anymore. We really don't need all that junk we carry around. Be vigillant in clearing out old receipts from your bag, it's amazing how much paper weighs, and try not to carry around too much small change. I tend to carry my water bottle seperately, but I think we need to design a fashionable water bottle carrier.

Be aware that if you are starting to take some anti-inflammatory drugs, they are also pain killers, so it will be easy to over strain yourself and not notice. I'm going to try the approach of doing a little bit more every day, and taking pain killers when it hurts, but being careful not to overdo it today. It was frustrating swimming today as I could only do half a dozen lengths, and then my shoulder started to ache, even though the rerst of my body wasn't tired. I was never the fitest of athletes, but even I could swim a little further than that. Oh well, I'll go again in a few days and see if I can swim a little further next time.

Glad to know your mothers birthday went well, but I'm sure you need to take a little time for yourself now, so take it easy, and maybe try a little recreational shopping for new bags.

Well I did write - not been to the sales this year - which is only 17 days so far. Some of my handbags weigh a ton before I put anything in them. I also think the fact that sometimes when I open the wardrobe door they fall out on me is a sign I have too many.

Anyway I have been working at the pc past 2 days in an effort to get back into things and carefully taking tablets regularly rather than when I suddenly remember I should have taken one. I think there may be a slight improvement since last night as I have not been standing so much this week and really rtying to do medication regularly.

Now though I do wish I could be as self disciplined as you sound and give up the moment I feel pain. I tend to battle on through the pain barrier even with tears in my eyes refusing to give in.

Hi Pauline!
I have had a lot of shoulder problems and a very weak left arm after treatment and neck dissection. I do physio every day which isnpainful to begin with but gets better the more you do. I also have a sports massage every 3 weeks which really really helps. My hospital actively encourages alternatives and we have our own reflexologists and aromatherapists.
I went to my gp about my deafness and tingling legs and they really haven't a clue what to do with you.As i still see my surgeon every 4 weeks I am still in the loop and get seen very prompltly if I have a problem.
Anyway try a massage again its well worth it.
Anne

Hello Anne
This pain is slightly different to initial neck/shoulder pain. I beleive it is called l'Hermittes sign. I know this is a common pain for those who had radiotherapy to the head and neck but often occurs several years after the therapy. I will be avoiding massage as I am now convinced that is what set it off again.

This is an extract from a web definition - 'L'Hermitte's sign describes electrical buzzing sensations in the limbs and body brought on by movement of the neck. These sensations are known as paraesthesia and include tingling, buzzing, electrical shocks, partial numbness and sharp pains. L'Hermitte's is most often triggered by lowering the head so that the chin touches the chest. The sensations usually only last for a second or two....L'Hermitte's is associated with a number of conditions including arthritis, cervical spondylosis, disc compression, pernicious anaemia, tumours and multiple sclerosis. In many cases, the cause cannot be found... '

Since I have had cervical spondylosis for 20+ years and radiotherapy 4+ years ago I think this is what it is. I feel as if someone has stabbed me and in bad bursts of the pain it feels like a knife is being twisted in that point. It's not like any other pain I have ever experienced. Whilst the pain is only for seconds the repeated nature of those bursts over the day at the most unexpected moments does get one down. I am off to the GP tomorrow and also see the consultant next week so hope for some effective help.

I want to know if anyone else here has this exact pain or has had l'Hermittes diagnosed.

This message has been edited. Last edited by: PaulineT,

Pauline,
I think I have had this in the past, just occasionally. Have you ever put your tongue across the the terminals of a PP3 bvattery. I did it once (by mistake) and it felt really weird. I used to sometimes get strange clicks in my neck followed by this sort of pain. It's awful, and you really can't do anything but sit still and wait for it to go away. If that's what you are experiencing now then I really feel for you.

Hi Pauline, I saw my oncologist yesterday and he says that I may have the same syndrome . I have major tingling in my arms and legs. Have also gone deaf in left ear. I had blood test and going for ct scan next week to see if it could be anything else. He has also suggested a thyroid problem as I feel cold all the time. Who Knows?
I have also had problems with my heart slowing down too much. I used to think I was fit and healthy!
I am sure this year will be better than last!
Anne

Anne,

You're only just getting over the treatment you had. I was diagnosed in October 2005 and had my treatment through December 2005. It's only in the last couple of months that I've really started to look and feel like my old self. I still have a few niggly problems, but I now recognise that these are due to the treatment I have had. I think that you feel so bad after the treatment ends, that as you start to feel better you underestimate how far from recovered you really are. Please be reassured that you probably have got a long way to go yet in your recovery.

Well ladies I think the problem is that whatever stage you are at there are always up and down problems. Some days you move forward and some days back.

Jenni - no I have never felt tempted to test a battery on myself. Am beside myself wondering how old you were when you did that!!!!

Anne sorry to hear you are also suffering so much and am interested that we all have symptoms which show general damage where we had radaition.

For 2 years now I have had tinnitus too and notice you mention ear damage. My hearing is fine but at night the tinnitus is an added irritation and I have had antibiotic ear drops at least 7 or 8 times since treatment and can only recall ever having them a couple of times in my lifetime before. I also have broken veins now appearing on the back neck irradiated areas as well as the front. So the treatment takes its toll in ways you never expect. We are all told about ulcers and no saliva etc., to expect during rads, but very little long term info is mentioned.

I think we have to just try to get medication and have a good moan here. What alternative do we have.

I had lots of this shooting pain in the first year after treatment, but this is a new variant. It can get you down when it goes on for weeks. No wonder long term PEG patients get depressed. It's the relentlessness of a situation. Well any pain can get to you wherever it is. It's the relentlesness of it that is getting to me and I am usually upbeat and have quite a high pain threshold.

Ohh and ear wax - what's that? A thing of the past - never had any earwax since radiotherpay dried it all up. Now I get scaling peeling skin inside my ears which sometimes inflames.

Anyone else get that?

Pauline,
In answer to your question, I was at school and my calculator battery diudn't make a good connection. So I used to tighten up the clamp connectors with my teeth. One day I caught my tongue on the two terminals. I think I was about 17 at the time, and now nearly 30 years later I can still remember what it felt like, so it obviously made a very strong impression.

I'm relieved it was an accident!

I have been Docs this morning and he was very good. Prescribed much stronger Capsaicin cream and has suggested further investigations with some Xrays next week. He gave an explanation which I may garble a bit here along the lines of radiation damaging the muscle and nerve supply and then some muscle atrophy and the nerves then not being able to supply the muscle correctly with electrical impulses thus causing parts of the muscle to die and so waste away. Then use of muscle then causing some pain.

He gave me a thorough examination and as I was groaning in pain due to removing sweater I think he got the gist of my degree of discomfort.

I don't know about you, but what I often find is not getting the same doc who has seen one problem the next time. At least it was the same GP and he could see I was worse than a few weeks ago. More importantly he took my pain seriously.

I still haven't had the results come through of the Xrays I had. My shoulder and cervical vertebrae have been creating dreadful pain, but this past week I began to feel that after resting for the few weeks and basically my husband helping me dress and doing extra chores etc that by not overstretching, the pain was reducing a little.

Just wondering Vinod if you have any content on pain management techniques.