[DaiCroParticipant]

Hi All,

I know it sounds rather silly but I have been in a lot of pain over the past 6 weeks with my shoulder and I haven't taken anything but paracetamol. :-S

I reported it first about 8 weeks ago (a couple of weeks before starting Rev & Dex)… my consultant said that the Rev & Dex should take care of it (assuming it was a new area of disease) and it did seem to be getting better… several times… but each time I stretch my arm up it catches and causes pain with a residual ache. (I can put lots of weight onto my arm but doing something like adjusting my rearview mirror can set it off in no time). :-0

I go to the hospital on Tuesday for interim blood tests (fortnightly for the first 3 cycles to keep an eye on my WBC's, Platelets & Neutrofils) and I want to know what's what. I felt so bad after a few bad nights sleep and the pain in my shoulder that I was convinced that my R&D treatment had failed. Truly, all day Monday I was in a complete funk… thinking 'now what?'.

But after a couple of decent night's sleep, thanks to Eve's prompt about Amitryptiline, I felt so good (excepting my shoulder) that I thought 'surely not'.

So I am now wondering if what I have got is a plain and simple damaged shoulder… a small fracture or something similar that I keep aggravating. Its one or the other… and I prefer to think the other… the damaged shoulder.

The thing is, the paracetamol seems to work… the pain eases and my shoulder doesn't feel so inflamed

I should have a better idea after Tuesday but if my bloods are okay I am going to insist that my shoulder is examined… like I asked for 8 weeks ago but was dismissed as being mm related and left to Rev & Dex.

My history of dramatic relapses leave me feeling very vulnerable right now… but up to this point I have always responded well to treatments… the problems begin when I finish. If it is a damaged shoulder then we can go from there… and I'll bear the pain quite happily (while smashing into my Oramorph) but I will also feel bloody angry… if that makes sense. >:-(

Dai.

[brochoParticipant]

Morning Dai no wonder you have been losing sleep there is nothing worse than having a pain you dont know the cause of . I must admit I am very surprised your doctor dismissed your concern without even doing an x-ray . I think you are right to insist on examination of your shoulder as soon as !If it is mm then it does not necessarily mean your current treatment has failed as it may be be residual damage prior to your treatment Good luck on Tuesday and keep taking the Amitrpytiline lots of love to you and Janet Bridget x

[tomParticipant]

Morning Dai

I have had same over the months and told my Consultant and he checked me over and put it down to 1)Old age ((ish)) and 2) just doing too much and he tells me its not MM related so I will go with that. same symptoms as you Dai that bad toothache but in shoulder (right one) and down the arm, if I stretch the arm I get a sharp pain down it that makes me shout out (and my pain threshhold is pretty good)

But as for the other part i had a sever pain in my left wrist whilst stretching my fingers, after a day I took the aforementioned wrist up to A/E and told them about my MM and the wrist at the book in desk behind the desk was a Nurse who had MUGAS and she pushed me through the system and from start to finish (triage/x ray/triage and wrist strap all done in 45 mins) I was told I had pulled a tendon 😀 .

I hope the above is same for you Dai and I know how you feel by the "Not Knowing" good Luck for Tuesday am sure it will be same as mine (Old age or a pulled something 😀 )

Have a Happy Easter and hope your pain is soon resolved.

Tom "Onwards and Upwards"

[DaiCroParticipant]

Hi Bridget & Tom,

Thank you for your encouraging words… I have sort of convinced myself that it is 'normal' damage… or that if it is by way of mm disease, that the pain is due to the residual damage caused by the disease which has now been dealt with by R&D.:-)

Otherwise I feel okay… good appetite, PN bearable, look okay… ah, yes…

Janet brought me breakfast in bed this morning… with the plan to eat, take my medication and go back to sleep… because I didn't drop off until 6 am …ish, after a 'live' night. 😐

I said 'Amitryptiline 2 Dex 1… but when I went to take my medication (which I sort and check into a small ramekin) I found last night's Amitryptiline tablet nestling in the bottom of the ramekin… looking small and lonely and wanting to know why I didn't take it with the 'big boys.;-)

Its not the first time (and I don't suppose the last) that I have missed medication… of course, now that I'm on oral treatment I take much more care but I have missed complete doses… usually the morning doses and I only realise several hours later when I have flu-like withdrawal symptoms… quite bad at that and after only one missed dose.:-/

So, back on track tonight but I'll have to suffer through today because after breakfast Dex decided to kick in and I'm buzzing… but all the Dex signs are there for the telling.

Hey ho… silly billy.:-D

Dai.

[HelenParticipant]

Hi Dai
I think you should really whinge about your shoulder when you next go. Mm might be smoke screening and there are lots of really painful shoulder things- like frozen shoulder, impingement or painful arc syndrome, all of which are simple (as in not 'serious') but need lots of pain relief and physio because they can mess up normal life and need to be excluded because they do recover with the right treatment. With your other movement limits you could do without this. I too am surprised you haven't had it x rayed, could you have fractured it?
Love Helen

[BADGERParticipant]

Hello Dia
I will be keeping my fingers crossed for you on tuesday I really hope the pain in your shoulder is not MM related it sounds good that paracetamols help as they are not the best for severe pain lots of luck
Love Jo x

[DaiCroParticipant]

Hi Helen & Jo.

Thank you for your support… I was wondering the same thing Helen, that I could have fractured it by over-stretching etc., although I can't remember any particular occasion where I might have done so.

I was sent by my haematologist consultant to see an orthopaedic consultant at the Queen's Medical Centre, Nottingham… not long after I was first diagnosed at the Nottingham City Hospital in June, 2009. The consultant reviewed my case and agreed that I needed pins in both upper arms, bottom left and my femur… (the femur being the most urgent as it was load bearing). It was agreed to wait until I had recovered from my SCT… but my SCT failed after 10 months and there has been no word since (although we have been busy with other treatments etc.

I am told that I have extensive bone damage but I have only ever had Bonefos for my bones. I have heard of Zometa and other treatments but they have never been discussed as an option. The orthopaedic consultant told me I had to take care because the lack of marrow in my bones meant that I could easily cause stress fractures etc… but again, no word of support or treatments.

I will discuss it with my lead nurse on Tuesday… if the indications are that Rev & Dex are still on track then I will push hard for causality of my shoulder damage… and get my skeletal position reviewed while I am at it.

Yes Jo… the fact that paracetamol seems to ease the problem tends me to be cautiously optimistic that the damage, inflammation etc., is either not mm related or it is residual.

We will see.;-)
Dai.

[HelenParticipant]

Oh Dai I didn't realise that you already had arm involvement. Stress fractures need very little 'stress' sometimes to occur. I'll think of you sitting in clinic while I too sit in clinic and will wait to hear how you get on.
Love Helen

[KeithH17Participant]

Hi Dai, I too have had pain, in my right shoulder and the left side of my neck, also some days I get a crunching sensation in my neck as if the bones are grinding together,and they most likely are doing just that.
I've also had a burning sensation type of pain in the middle of my back.
All of this seems to come and go but it is disconcerting.
I had a lot of problems with fractures in these areas so it's no doubt it's left a weakness.
My latest blood tests checked out although they forgot to check the PP's which is the most important.
I have an appointment with the Consultant next month for my routine check then it's a holiday in June the first for 2yrs.

NB By the way took your advice on the MAC and bought one 3,weeks ago and couldn't be more pleased with it.

Thank's again and look after yourself…..Keith.

[mhnevillParticipant]

Hi Dai

Sorry that the pain in your shoulder is still as bad. Interestingly, I have had a lot ofpain in my left shoulder and can't take any weight on it. They have provided me with a riser to get in and poutof bed with. Mt Consultant did have an xray done on mine and it turns out it isn't broken, but is probably arthritic. If yours is, maybe it expalins why the paracetamol is helping. I have been put on oxecontin and it has helped a bit.

I can't see why you aren't on Zometa by now as it is in the NICE guidelines. Do press them as they say it also has an anti myeloma effect as well as being good for the bones. The down side is you have to go to the hospital for the infusions, but at least they don't take too long.

Keep hanging on to thoughts of that holiday! Have you thoguht of having any adaptations to your car? I think I am going to have to get some help with steering.

Take care. Love.

Mavis x

Do hope you get some good news on Tuesday.

[DaiCroParticipant]

Hi Mavis,

It turns out that I do have two fractures.. one in the top of my arm and one in my shoulder blade. I have been given a sling to force rest but I have been told to use it normally for the rest of the time, including driving. I have to avoid stretching up and out but apart from that I believe its just a matter of time and natural healing. The fractures were caused by weakening due to myeloma but as i have said elsewhere, I reported the problem when it was just a pain in the arm 9 weeks ago… the fracture in my shoulder blade has occurred more recently. :-0

My consultant will be back from holiday for our meeting a week on Monday and I will want to talk to her. This is the second time I have had my concerns dismissed… last summer, whilst on Velcade, I made a complaint about my legs.. several times… I was ignored and ended up with a DVT (I was told DVT's aren't common with Velcade). From that I have ended up on Clexane on a permanent basis. As for Zometa… I have been told I have comprehensive bone damage but Zometa has never been mentioned… perhaps with these latest fractures they might consider it but I don't want to be on anything that isn't necessary.:-|

Hope you are feeling better than the last time you reported in.:-)

Dai.

[eveParticipant]

Hi Dai
I can only comment on Zometa,and reading up on it,as Mavis says it,s suppose to help with Myeloma,although I have to say a dentist told us,it is more effective in the first few months!!!:-P
I am not like you Dai,I know I should have confidence in the experts,but it,s not there life,and there views differ so much,,so I will go on questioning there views,pest I might be,but a nice one with good intentions.Love Eve

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