What does bone pain feel like?

[karmacrepe]

My bf keeps having this recurrent pain in his elbow. I know CLL can cause bone pain but how would he know if that’s what he’s experiencing?

[Newdawn Administrator]

‘Bone pain usually feels dull and achy… like the pain is coming from deep inside your body. The skin near the affected area will probably feel tender to any touch. It might also hurt when you move or use that part of your body’.

As your husband’s pain is localised to his elbow, it could be something like tennis elbow. I had a steroid injection into the area when I suffered this. Maybe mention it to his doctor but doesn’t seem a strong connection with CLL if it’s this localised.

Is he still losing weight? Is his CLL making him anxious because some of his symptoms that I’ve read in your other posts could be connected to this.

Regards,

Newdawn

[karmacrepe in reply to Newdawn]

He hasn’t lost much more weight. I don’t think his symptoms are caused by anxiety over CLL because he doesn’t research the symptoms much at all.

[JigFettler Volunteer]

Short answer he won't / can't know.

Bone pain is a dull, gnawing pain, it's classicically troublesome at night. Night pain is always important to diagnose. Bone pain invariably does not relent by changing position. It's also resistant to usual pain killers.

Bone pain is always important. It takes special investigation to sort out.

So please see your Dr about this.

Jig

[karmacrepe in reply to JigFettler]

You said it doesn’t help to change position. His pain seems to mostly occur with movement, like when he tries to lift something. It’s not constant. Is that a sign that it’s not the sort of bone pain you get with CLL?

[JigFettler Volunteer in reply to karmacrepe]

Bone pain occurs when something is going on inside the bone itself.

So pain on moving would suggest another cause, outside the bone. But remember, these medical signs are not a guarantee of what's causing the pain. That's where a Dr's consultation is needed to find the cause. The Dr may need more help, like an xray, CT or even a bone scan.

I hope you can get a consultation organised soon.

Jig

[otonal]

Bone pain is often compared with toothache. Deep dull and gnawing and often not related to movement.

[Pearlpink]

I used to get bone pain in my lower forearms, and in my shins, and hip bones. I found I had to keep my levels of vitamin d, vitamin b12 and ferritin topped up or I would get it a lot. Agree with the others, it’s like a gnawing odd pain.

I agree with the others. Ask a dr about the elbow pain to rule out tennis elbow, infection etc.

I have noticed quite a lot of people on here, myself included who have a vulnerable joint that is made more painful by something to do with the CLL.

I had a very very large spleen and I always felt like I was turning over vitamin b12 at a very fast rate. Likewise I found my ferritin levels dropped like a stone because of my large spleen.

I had to keep out of the sun and wear sunblock, because of an inherited skin condition and CLL so my vitamin D was always low so had to always take supplement.

I was lucky that my hair started to fall out whenever I was low on any of them so it warned me! And my bone pain was always better when I took vitamin d again, and had a bit more iron in my diet etc.

[karmacrepe in reply to Pearlpink]

That’s a good point about the vitamin D, his level was very low the last time anyone checked. I asked the hematologist about supplementing for vitamin D but she just said that’s something to take up with the primary care doctor.

[Shedman in reply to karmacrepe]

Vitamin D: the sunshine vitamin .. trouble is, that CLL immune impairment sees us around 8x more likely to suffer skin cancers, most commonly squamous cell carcinoma (the easier to treat, somewhat lower risk type, caught quickly..)

ie. it is wise we moderate our sunshine exposure

..and wise that we supplement with vitamin D: it is likely that many of us take 1000-2000iu daily, others (common in French primary care) may take a larger dose at greater intervals.. *a periodic blood test will show whether supplementation is delivering a good blood value of 50-100 or not.

In UK the sunshine has no vitamin D value from October til April

(..wrong wavelength, insufficient strength)

It may be wise to also supplement with vitamin K2 (mk7 version, perhaps 50-100mcg/day) as this is involved in processes determining deposition of minerals to bone rather than to blood vessels.

Yes: low vitamin D can result in bone pain / abnormalities.

[Shedman]

Alongside what others have said..

Is he motivated to really get to the bottom of this?

I'd suggest combining all avenues:

1. Stop all activity that might strain the elbow.. ie. rest it

2. Supplement vitamin D (maybe 2000iu per day) and magnesium, go with citrate or glycinate, not oxide/sulphate. (we are rarely short of calcium) .. vitamin K2 is also relevant to bone health.

3. Get enough sleep, regularly.

4. Pursue answers with GP.. Does he have a good GP / GP relationship?

..most likely involves blood tests, though eliminating 1, 2, and 3, above first, simplifies things with primary care.

Work through to resolution of symptoms via rest/treatment/diagnosis that reassures him/you.

--

No wish to alarm (but as with all matters of health, we are best to pursue answers, with good reason) - there is no telling without medical expertise and doing some homework, both..

Story: My Uncle, a vigorous sportsman of squash and cycling, repeatedly attended his, putting it politely, "old fashioned" and at retirement age GP, whom repeatedly reassured him that it was likely tennis elbow.. without referrals or fancy tests.. his symptoms continued, including more widespread aches around shoulders/arms..

In due course, he was diagnosed with AML, a diagnosis that has seen far less treatment progress than CLL.

--

I hope he does his 'homework' of resting the arm, sleep, diet and pursuing satisfactory attentions of primary care through to reassuring resolution/diagnosis/treatment. Your coming here to ask questions is perfectly sensible, but try to avoid 'Dr' Google;

I've currently got a very unhappy sore knee - just the one side, fortunately.

Baffled, one day I got on the scales.. Oh Dear! I've gained too much weight.. no wonder my knee is ☹️.. time for me to lose that weight. Simple explanations do occur.

[karmacrepe in reply to Shedman]

The hematologist dismisses pretty much every symptom as not being related to CLL. (He hasn’t specifically asked about the elbow pain yet). She just says he needs to ask his primary care doctor. He’s basically assigned to clinic for primary care, not even an individual doctor, and they schedule appts months out.

[Pearlpink]

just remembered. When I was first low on vitamin d I couldn’t get a test on the nhs in this part of the UK. They wouldn’t do one if calcium and phosphate etc were ok! It was before I was diagnosed.

I found a very simple private pinprick vitamin d blood test. It showed I was vitamin d deficient in a big way and Noone has refused a test since. It was worth doing that one test as I could do it so quick.

I also bought tests for my dad and his brother and one of them was severely vitamin d deficient. Again, no one has ever said since that they can’t have a vitamin d test.

To be honest, I just did a simple private test so that I had a record of the result and could start taking vitamin d as soon as the test had been done.

I take 100micro grams daily and if I forget it I soon get low.

I know I need to take it because I have to keep out of sun and use sunblock. Mind has a tendency to drop quickly but some people are much more normal lol!

I used to find my bone pain improved within a week but full effects of vitamin d take a few month. Good luck!

[Pearlpink]

ps I get vitamin d myself over the counter x