[tm1960Participant]

I have been diagnosed with smouldering myeloma about 1 year ago when I visited my GP because I was getting pain in both my back and abdomen.  Since then I have had a number of tests including MRI, PET scan, CT and xrays and they can’t find any bone lesions.   They keep telling me that it is arthritis but I am not convinced.   Has anyone ever had pain in both the front and back?   I live on a very small island off the mainland of Australia and the expertise here is low…very low.   Would love to hear from anyone.

[graham-cParticipant]

I cannot answer your question directly tm1960, but I find the best way to monitor my condition, which is at the MGUS stage, is to monitor my blood test results. With MGUS I am currently at low risk and I would not expect there to be any significant symptoms. I always look at paraproteins, free light chains, eGFR and kappa/lambda ratio and they tells me how the disease is progressing, if indeed it is. Last times my readings had lowered, but it is still there. If a rise in readings coincides with an intensification of symptoms then it’s circumstantial evidence that they are connected.

I have plenty of symptoms and, having had kidney cancer, they could be related to that or the treatment I received. As long as my results remain steady and low then any symptoms I have are likely to relate to something else. I have a prolapsed disc that occasionally slips, leaving me barely able to walk when it happens and my back will object if I go on long walks. As a precaution my GP sends me for x-rays when it happens but pain killers and anti-inflammatories put me right.

If you’ve had scans the simple thing would be to ask if they can identify on them what is causing the pain in your back – and abdomen. I do have problems with my abdomen but I’ve had lots of investigations and nothing has been identified and, I suspect that if I push too hard for intervention, things could be made worse. I did discover that I have diastasis rectus as a result of over exertion in my younger days, which is basically a separation of the main abdominal muscles.

Knowing what is causing symptoms is a help and enables you to better judge which are symptoms that need to be addressed and those you have to cope with. Have they given you any medication for your arthritis ?

If your myeloma is not advanced, it’s a long slow slog hopefully but, if you have symptoms affecting you badly, what’s causing them ought to be identified and addressed. It helps you if know your myeloma blood test results.

[cygnetParticipant]

Hi – I’m sorry to hear you’re suffering….

Can you describe the pain for us? I ask because I too have smouldering myeloma & quite alot of joint pain – including back pain. I’ve had neuropathic pain in my abdomen /pelvis – is this similar?

What sort of arthritis do they say it is?

I do feel for you because chronic pain is so tiring & it’s also a constant reminder of SM being in our lives.

C x

[tm1960Participant]

Thanks for your answers cygnet and Graham C, I do try to keep an eye on my status but it is very hard because my dr is not very forthcoming.  To add to that, for my first 3 visits she kept saying my blood count had remained the same.  However, we she moved and I got the Oncologist back she said my count had gone up 25%.  I know at the moment that paraprotein count is sitting at 35 and my bone marrow was 13% but they have not found any bone lesions.   So they say that means my status is a wait and see.  I have no problem with that but I am still left with the pain.  On the scans they found spinal damage which is cervical but I don’t get any headaches, neck issues and no pain down my arms or in the shoulder.  All my pain is in my lumber spine which they say is fine.  Therefore if they can’t find anything wrong in that area then why am I still getting so much pain.   They also found “something that needs to be investigated” in the bowel, probably just a small polyp that needs to be removed.  I feel totally isolated down here where non-one seems to know what to do.

[tm1960Participant]

Hi cygnet,

My pain is like a knife is being stuck in my abdomen through to my back and every now again it gets twisted so the closest I can describe it as it labour pain.  I have it from morning to night and it gets worse by the end of the day.  I work full time so I either put up with it or recently I have been given Tramadol and anti-inflammatories.  They work most of the time but not always.  They haven’t really given my arthritis a name, they are not even willing to directly name it arthritis, they just say it probably is arthritis.

I am getting so tired and run down having to deal with the pain on a daily basis, trying to not take time off work as we are in the middle of a restructure so I don’t want to give them any excuse to get rid of me.

[HarmonyParticipant]

Hi, I hear your frustration and pain and I’m so sorry that you’re not getting any real answers. How about phoning the myeloma info line? There’s always a reassuring voice willing to listen and help.x

[tm1960Participant]

Thanks for your kind words Chrissie:)

[CarolsymonsParticipant]

Tm1960 try the Multiple Myeloma Australia Facebook page as there may be others there who can recommend specialists near to you who may be more helpful than the doctor you are seeing currently. You need an explanation for that level of pain.

Carol

[mikeyParticipant]

Hi , Just a quick line, very sorry you are in such pain my friend .
In your case as it has gone on so long I have no answer, so this may be more helpful for others, in future, though the fact you say abdomen pain too makes me wonder.
I recently was in SO much pain that lasted almost 4 months, I was in fact screaming with pain when i got out of bed or moved in bed,I could not put socks and shoes on or walk, it was awful, i assumed it was bone pain with the Myeloma, but in fact it was a Bladder infection, believe me the pain was frightening, it was in the lower back and abdomen , finally it was diagnosed and a course of anti-biotics sorted it out in a further two week,s, So PLEASE anyone that gets such pain in that area, please suggest to your Team it could possibly be a bladder infection with all the drugs we take, you could not believe what pain it can cause.
Hope your pain is sorted soon
Regards to everyone.

[tm1960Participant]

Hi all,

Thanks for all your support and advice.   I will seek another specialist to get to the bottom of this pain.   I hope you all stay fighting and stay well.

[cygnetParticipant]

Hi – sorry to be slow in coming back to you.

As well as considering seeking another opinion on your SM, have you thought about seeing an osteopath, physio or chiropractor? I suggest this because my regular osteopath/physio sessions & exercise help me manage my pain. Please bear in mind issues with your upper back ( cervical/thoracic spine) often cause/refer pain into the lumbar ( lower back ) area as the body tries to adjust itself. But of course we are all ( wonderfully) different!!

It sounds like you feel very isolated – partly because of the geography of where you live but I also think- sadly- our diagnosis makes us feel isolated ( well, that’s my opinion……)

I also think this sense of isolation isn’t helped by the massive discrepancy in experience & expertise we encounter in the medical world. I am seen by a conscientious  but very general haematologist  in a small local hospital in Kent but if I move on from monitoring I will definitely ask for a referral to a myeloma specialist. I am also fortunate as I have an excellent gp. Perhaps it would help you if you could feel more confident about at least one member of your support team?

I hope you get some answers & start to feel better soon,

Love & hugs,

C xx

 

[docmikeParticipant]

Dear Tm.
I understand your dilemma and there are lots of grey zones in our understanding of smouldering myeloma .But you a have had all the tests available which could detect myeloma bone disease assuming the neck problems are cervical spondylosis related ( which btw i have also) . The pet scan is very sensitive hence the colonic polyp detection which is apparently a common” red herring ” as i was warned about this possibilty when I had mri pet scans and xrays when my M spike went up to 40 . This was just before I became anemic enough to be regarded as having one of the CRAB features which enabled me to enter the trial myeloma X1 in the uk which gives you a chance of getting the better treatments . I would think this type of issue may apply in OZ.
However others have rightly suggested looking for non myeloma cause bearing in mind the sensitvity of a pet scan which causes lots of false positives ,such that a negative pet scan is as good as it gets and to some extent very reassuring ( colonic polyps are symptom free).
However a referal to a unit with expertise in myeloma in one of your larger cities (Sydney the obvious choice perhaps) may bring you into contact with someone who has seen lot of smoulderers and may have seen a patient with a similar problem to yours in the past, or who also would look for alterative explantions unrelated to myeloma .Have been a clinician myself , I have to tell you that not every pain is explicable despite extensive testing and indeed intensive thinking and that is a better explantion than being told there is nothing wrong with you.
Your protein being over 30 puts you at a higher risk but nothing is 100% certain in smouldering myeloma.But continue to search for answer before considering physio etc .
Hope this is helpful bearing in mind that there somethings you do not particularly want to hear
An active arthritis would be expected show on a pet scan but osteoarthitis would not. Anti inflammatories /nsaids can cause problems for the kidneys in myeloma if not elsewhere .
best wishes
Mike

[tm1960Participant]

Thank you Michael for your advice.   I know it is difficult to find pain in the abdominal area because there is so much that could go wrong, all I know is I need to manage this pain somehow because it is taking over my life in a very unhealthy way.   I am trying a new GP just so I can get a fresh set of eyes on the problem.   Hopefully something will come from that.

 

[avantrompParticipant]

Hallo fm 1960
This morning I read an article in our newspaper and it describes exactly what you are suffering. There is no point in copying it for you because it is in Dutch. Briefly it says:
Year-long suffering from agonising pain in the abdomen, unnecessary operations and investigations, and finally being told it is “between the ears”. This happens to 2,000 Dutch people every year.The solution is simple: numbing injections or possibly cutting of a nerve branch in the abdomen wall. Trouble causer is”Acnes – Anterior Cutaneous Nerve Entrapment Syndrome”. It can occur spontaneously or after an operation and 75% of sufferers are female. A campaign has been started to make doctors more aware of it since they see so few cases and therefore fail to recognise it. A special clinic for this has been set up in the Maxima Medical Centre in Veldhoven where there is outpatient treatment.
Sorry this is so long-winded and might not relate to your problem but it could be the answer.
Best wishes
Annette

[tm1960Participant]

Hi Annette,

Thank you for translating that article for me, I really appreciate it.  Funny enough, I had been researching on the net and I came across a couple of articles talking about that too.   It is certainly something I am going to be raising with my doctor.  Thanks again for taking the time.

[Author]

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