Generalised - and worsening - pain in arms and legs

A month is a long time to be off work with the flu, did you have mononucleosis? Did you get pneumonia on top of the flu? How old are you, graham?  There is a condition in which people who get mononucleosis end up with a form that is present for life and it is thought to be responsible for some forms of chronic fatigue syndrome. You can have a blood test for this, it would set your mind at ease that it isn't something malignant.  It bothers me that you seem unduly upset over this and you've been sick an unusually long time for the flu.  Do you think you've developed some depression to go along with all these body aches and pains?  Did you discuss with your GP your feelings about the pain being so constant now and deep rooted?  Those are words that she needs to hear too, not just us.  As a physician, I know that patients can sometimes keep the most important things to themselves and they think we can sort of divine these things from them, but we can't.  Our stethoscopes can only hear your heart sounds and breath sounds they aren't listening to your soul.  You need to tell your GP what you are thinking just like you laid it out here.

Lynn

Oh, what I meant is there is a blood test for the lingering type of mononucleosis and if you had this it would obviously be a non-malignant cause of your aches and fatigue.  There isn't a single blood test to tell if you have cancer or not, there are several that are specific for certain cancers, like the prostate ( which I am sure you got).  Researchers have been hard at work trying to get some genetic testing for certain cancers which would be nice to set people's mind at ease.  As a pain management doc, I know how people can get when they start to hurt, they don't know why and they always imagine the worst. When the pain become debilitating it is even worse because they then have to worry if they will ever re-gain their former life and a lot of the time I didn't have that answer right away.

I didn't realize your age when we first corresponded.  When someone your age has been down and out for a long time and they are complaining of leg pain you always need to consider clots in the legs. When you aren't active, things tend to just sort of sit down there instead of having the muscle motion push the blood back up to the heart.  When blood sits, it tends to clot and when you form a clot in your leg it hurts. It can also get infected.  The worst thing is if the clot breaks off and goes up to your lung, which would be very bad. So, your GP I hope has ruled out clots in your legs as the cause of your leg pain.  Myeloma pain usually starts in the back and comes with kidney troubles, so I am not thinking that your leg pain is that.One thing I ran across for someone your age is polymyalgia rheumatic, an inflammatory disease that mainly hits the arms, shoulders, hips, thighs and can bring on headaches and depression.  It sounded a bit like you, but I can't examine you, your GP would easily be able to rule it in or out on exam.  I don't know if you have a pain management doctor in your community, but if your pain persists you might ask for a referral. There are a lot of drugs that are used for other purposes, like for seizures or depression that also happen to work well for pain but at different dosages. I am on several of them myself now for neuropathic pain and they work really well.  I still do also believe you need to share with your GP how stressed you have become.  Do come back and share what happens at your appointment, I will check back to hear how it went.

Lynn

Hello again Lynn

Many thanks for taking time to get back to me again, and for saying you’d like me to keep you updated on how things go.

You’re so right in saying that people “always imagine the worst” when they engage in self-diagnosis, I suppose that’s both a blessing and a curse of the internet age in that we now have access to so much information in these days, but the flip side is that we have so much more to frighten ourselves with, too.

My own pains are now virtually constant, and even though I don’t think you could call them particularly debilitating in a strictly physical sense, the psychological effect is as emotionally wearing when it’s couple with a negative mindset that – and here’s that phrase again – will “always imagine the worst”.

I  do fear I have something very sinister happening inside me, and until my GP can convince me that it’s certainly not Myeloma, I feel my life will be on hold again as it was earlier this year when I feared I had prostate cancer.

I have a current self-referral with a local psychology unit who I’ve approached about my health anxieties.  These are so deep-seated and long-running that it’ll doubtless be like peeling away an onion, but I just hope they can help me to avoid any similar episodes in the future once I, hopefully, break through this latest one and put all the worries to bed.

I’m really quite old now, as you noted with some surprise in your previous reply, but I would like to think I have a little bit longer yet. It’s only last Autumn (around October and November) that I built my fitness back up and was able to complete a 5K run, and though my fitness levels have slipped back quite badly since, I’m confident that I could do that again if I could only just get free of all these (fairly) new ailments and nagging worries.

It’s going to quite a long weekend for me until I can see my doctor on Monday, but I’ll mention the blood clot worries, and see what she says about those.

Thank you again for your help, Lynn, and I look forward to our next exchange.

Regards again

Graham

Oh please forgive me, I didn't mean to suggest you were on your last leg at 63, LOL I am 58 so that would mean I should be preparing for my own funeral too!  I just placed you in the 30-40 range when reading your original post, which is why mono cropped up in my diagnosis, something I'd hardly consider had I known you were 63. 

Good for you seeing a psych professional, sometime it was like pulling teeth to get patients to acknowledge they had any need for that kind of help.  If I ever suggested it, the response was always that I didn't believe they had pain, "it was all in their head".   Having chronic pain has got to be the most grueling thing to live with mentally, I know that personally. It ruined my marriage and tests my current relationship.  Seeing a therapist can be a real lifesaver and not an admission that your pain isn't real. I got my start in pain management before the era of the multidisciplinary pain clinic. Nowadays it is easy, patients are used to seeing a therapist as part of their management in the clinic.

Anyway, you made me giggle, I am so sorry to have made you out to be such an ancient.

Lynn

Hello again Lynn

Thank you for your last reply last weekend,  and I hope all is well with you.

I just wanted to drop you another line or two to update you on my current situation.

My latest GP appointment took place last Monday during which I shared my increasing concerns over the pains in my arms and legs. I told my GP that I was having huge problems in accepting these as a mere post-viral reaction, as had previously been suggested, and that I was now worried that I may be suffering from either Myeloma or Fybromalgia. 

My GP – after first saying that my recent blood tests showed no markers for any form of arthritis – then proceeded to surprise me by saying that my current ills could be a case of ‘reactive arthritis’ which is a completely new thing to me and something that I’ve never heard about or read about before. 

I was about to ask the doctor exactly what ‘reactive arthritis’ is, but then she quickly changed the subject and after feeling my hands and wrists and elbows for a little while she asked me to raise my hands above my head and asked me if that caused me any problems, but I I told her that it didn’t.

The doctor then asked me why I suspected that I have Myeloma, to which I replied that my mother was diagnosed with it a short while before she died (of a non-cancerous alternative condition) and that my father also had cancer too, though this was sited in his pancreas and, in a secondary form, in his liver. 

I have to admit that the GP seemed to be at a total loss as to what she might suggest could be the problem, and said that whilst she very much doubted that my aches and pains could be ascribed to Myeloma – and she cited the lack of weight loss and the absence of pain in my back as evidence for that – she would nonetheless arrange for some further blood tests if I wanted them, and said she suggested we agree to then take things on from there. I felt I had no option but to agree with this new offer, and also asked about any possible tests for Fybromalgia, too, which she told me are not actually possible as this is a malaise that is diagnosed by other means, all of which gave me the impression that she takes a quite dismissive view of this and didn’t seem to accept it as a proper or ‘classic’ illness but something which is largely in the mind of the (allegedly) suffering party. I hope I’m not doing my GP a disservice in saying and assuming that, but I can only go on the impression I received.

This is thus the new position on my ailments. I am still very, very worried, and any apparent help I seem to receive from any reading up I’m trying to do seems to be dashed by something very worrying just a few short minutes after. I know I can’t just use you as my very own internet doctor, but I’d welcome any comments you might have for me at this point. 

Finally, are you in the United States, Lynn? I live in England, but got the impression you were either in the USA or South Africa, so I’d be grateful if you could let me know just so I can satisfy my curiosity!

Regards and thanks, as ever

You guessed right, I live in the US, in Florida to be exact.  I know how disarming it can feel to feel everything is on hold until you have yourself diagnosed, but as you already surmised, one of your possible diagnoses is one of exclusion- fibromyalgia.  There are a set of points on the body that are usually extra tender in fibromyalgia patients, but that's about it. There really isn't a good blood test for it, and if your doc can't come up with something for you, I suspect that will become your diagnosis.  I like that she is willing to keep hunting for you, to keep drawing blood and to consider each disease you are worried over. You are very lucky, you don't know how many doctors there are out there who would be dismissive and just blow off your suggestions as ridiculous.  I hate to admit that I have colleagues that behave that way.  I was taught to always listen to your patient, you may hear more than you think, while they clearly don't have what they are worried they have, that little symptom they mention could be very important in finally diagnosing them.

I had to go look up reactive arthritis because I learned it as renter's syndrome and I think your doc may have been on to something.  Your original post states that this all started with the flu and that's how Reiter's starts- with an infection of the  bowels, you feel flu-like. Several week later you get the aches and pains in multiple joints.  It sounds just like you.  You need to be tested for Chlamydia, Campylobacter, Salmonella, Shigella or Yersinia.  They call it reactive arthritis now because it is an inflammatory arthritis in reaction to an infection elsewhere in your body- ie the infection isn't in your joints, it is in your bowel.  I hope that your blood work included testing for those, because I really think she was on to something.

Lynn