CLL W+W related(?) back/ leg pain

[Belfastbees]

Folks, I realise I should have asked the extensive knowledge base here this question before now!

I have hitherto not connected any of my current symptoms to CLL even though it can affect so much.

My CLL does not bother me, I have zero symptoms and bloods are elevated but of no concern to my haematologist.

About a month ago I developed what I assumed was a muscle or nerve injury. I had been doing a lot of walking, however this is quite normal for me. On my last walk I did fell a tightness in the outside of my thigh but I pushed on, which I guess now was stupid. I can't pin down the source of the initial injury but it did come on rapidly, not over even a week.

I've not had much relief from it, a slight easement perhaps but I am quite curtailed in my activities which is a bind.

I did see my GP who has got me an NHS Physio appointment for 11th May and in his testing concluded it was most likely muscular and I've been given naproxen which does take the edge off. My Cll was not raised by me or him but I would hope he took a look at patient history before the appointment.

I still feel the tightness in my thigh accompanied often with a sharp pain beow my knee and down my shin, right side only, after some weeks with resting and no lifting.

The $64000 question is if its possible/ likely that I hav an enlarged lymph node causing an issue with muscle or nerve function in that area.

Does anyone think I should raise this with my specialist? I am in 2 minds to get an MRI scan done privately but if this may be related perhaps my specialist would refer me, the GP made no reference to it and I dont want to overburden the NHS for what equally may be a simple but slow healing injury. I would imagine a lymph node would swell graudally and regard it as unlikely to be the cause.

Grateful as ever for thoughts and understand its easy to assume a connection, but maybe I've just got too many miles on the chassis.

[Newdawn Administrator]

It’s impossible to know with 100% certainty Belfastbees but something tells me this isn’t necessarily CLL related. We are still subject to all the other maladies, aches and pains and general deterioration due to ageing as non CLL’ers I’m afraid. Muscle and joint pains in particular as I know to my cost. However in my case, I feel pretty convinced that 3 years of heavy duty CLL meds did work a number on my now wrecked back!

Sounds like sciatica and you may find that physiotherapy exercises will remedy the pain. The NHS moves slowly and methodically on these things I’m afraid and my experience is that even if you obtain a private opinion, they still insist on going through their own processes.

My haematologist has never really accepted a link between my severe back condition and CLL. Even when I had severe lymphadenopathy, an association was never contemplated.

Hopefully you’ll get some ease soon but if you have a forward thinking haematologist, it won’t hurt to mention it.

Best wishes,

Newdawn

[Belfastbees in reply to Newdawn]

I guess it's unlikely to be a lymph node as it occurred quite suddenly and I'd expect a slow creep if that was the cause. It is frustrating but as I say I have a physio on the 11th so will see how that plays out. I don't envy them trying to sort a regimen without a scan before hand, I understand it's how it is though.

[lankisterguy Volunteer]

Hi Belfastbees,

-

My experience is very similar to Newdawn

I had a lifelong history of back muscle problems that were often resolved by physical therapy and stretching.

But after several years of CLL, things got much worse. PT helped but several different deteriorations in the spinal bones were found, and two back operations 2 years apart finally resolved the major items, and PT and stretching keep the minor one at bay.

Did CLL accelerate my aging back issues? I have no idea,

but CLL was at the scene of the crime.

-

Len

[Belfastbees]

We are very complex machines!

[Vlaminck]

Hey, Belfast, just a thought. Is it possible you are taking statins? They can cause some muscle problems.

[Belfastbees in reply to Vlaminck]

Well yes, 10 years or so without any effects I've picked up on. The pain did come on over a day or 2 so I'm thinking it probably is a minor injury worsened by carrying on. I definitely recall my last walk thinking I had pain i should stop and go home. Of course I didn't, and that's a lesson learned!

[ChattahoocheeBoy in reply to Vlaminck]

exactly….and was the reason my doc prescribed COQ10 along with statins to offset upper chest muscle pain. Maybe it will help.

[SofiaDeo]

Any knee injuries lately, or history of knee problems? I recently had a Baker's Cyst under one knee rupture. The pain is similar to what you describe, and my massage therapist has noted the IT bands in my thighs are tighter as I compensate for the knee problems affecting my walk. I also have a complex torn meniscus that most likely will need some sort of operation if not knee replacement. I do not think it is CLL or CLL med related.

[Belfastbees in reply to SofiaDeo]

My knees are good, so far anyway. I do agree we subconsciously compensate when there's a niggle and move the problem along. Must be a nightmare for. A physio to assess.

[Big_Dee]

Hello Belfastbees

I am not going to be much help to you. I walk 3-5 miles every day and have roving aches and pains in lower body. Week or two it will be one ankle, next will be shin, then hip before it starts all over again. I personally do not think it has anything to do with my CLL, but rather my age.

[Belfastbees in reply to Big_Dee]

I ordinarily do a 6/10mile walk every other day. On holiday recently in tenerife I was doing 10+ miles a day. No ill effects and the weather was glorious and the walking enjoyable and not too arduous, a few minor hills but all good surfaces. Perhaps my body had got accustomed to the heat and didn't like being asked to walk in Ireland. 🙄

[skipro]

Welcome to the world of $64K questions.

I am an orthopedic surgeon and can say a bit that may help. If a lymph node is right next to and compressing a nerve, it could be the source of pain. Or it could just be some unrelated condition.

It may end up that you should get an MRI as at some point, you'll need to know the source of pain.

I'd recommend seeing an ortho surgeon who can help sort this out.

As a doctor, I typically do order an MRI of things that could cause the symptoms under certain conditions and criteria.

God bless

skipro

[Newdawn Administrator in reply to skipro]

Your advice is sound skipro but I’m afraid in the U.K., a curious system seems to have developed where everything is tried first and eventually they resort to diagnostic techniques. It’s taken me from 2018 to eventually receive an MRI on the NHS (with Covid intervening to stop proceedings of course) but our GP’s can not longer refer directly to orthopaedic surgeons on the NHS. Patients are ‘triaged’ through muscular skeletal clinics (without the benefit of any imaging in many cases) and it’s then a bit of an obstacle course. I’m going through it now and have been through the entire gambit from physio assessment to senior physio assessment to an actual physiotherapy unit to a referral to a Pain Management team then onto injections in my back and eventually a referral to a spinal surgeon (with a 12 month waiting list). Most of this is done via ‘phone consults. In the process I’ve become so incapacitated and in pain that I had to pay to see a spinal surgeon privately but the NHS will not accept the recommendation from a private opinion (though the excellent surgeon I saw on the NHS concurred with his assessment.)

It’s a crazy, crazy world the NHS I’m afraid. We love it but it’s like a mad relative at times! 🤪

Newdawn

[skipro in reply to Newdawn]

wow

That may be why I would get a lot of patients from the Canadian version of the NHS who paid cash for treatment because of a long waiting list in Canada.

So sorry it's been such a nightmare for you.

[ChattahoocheeBoy in reply to skipro]

I had a TKR a year ago & my ortho says he needs to do a ‘revision’ due to movement, clicking etc….which I mentioned several times during follow up post surgery ( when he said give it more time). With 3 years CLL on W & W, unsure if it is detrimental to keep waiting doing PT or not….still need other knee & about to have cornea cell transplant!! On & on it seems. Appreciate ur advice!

[Belfastbees]

I do feel some easement and I'm sure an mri would be very telling. I can't fault the NHS, so far, GP was very prompt and I have a physio appointment. That's in 7 days time and I hope I'll feel improved again bu that time. I've often had issues with my back or hip however they haven't lasted long nor have they been as sore. Newdawn is right about the NHS and I accept it for what it is but I can see it seems logical, as an engineer, to gather as much data as may be useful.

I did get a ct scan just prior to diagnosis, autumn 2019 and will be due another 4 monthly consultation session early June so hopefully I can stick it out to then. I'm fortunate that I could go private for a consultation and mri, I have a ortho recommended for that. I managed a 2 mile walk today, some discomfort however on finishing that passed so seems to be improving. It will be 6 weeks this Saturday though, a long time to bear it but I'm always of the opinion things could be better, but they could also be worse.