Severe Thigh Pain: I was diagnosed for CLL 1... - CLL Support

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Severe Thigh Pain

Hrdy profile image
Hrdy
11 Replies

I was diagnosed for CLL 12 months ago and had 6 courses of FCR Chemo which ended in August 22 . I have low immune system but feel ok, in the last month I have had severe thigh pain. I did have this during chem but was told due to the injections I had to support me through the period. Is it normal to have this type of pain 6 months after chemo its like a nagging tooth ache ?

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Hrdy profile image
Hrdy
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11 Replies
GMa27 profile image
GMa27

I never experienced that during or after my 3 rounds of FCR. Ask your hematologist. In the meantime you can try Claritin without D. Sometimes helps with pain.

🙏💕

CycleWonder profile image
CycleWonder

I had severe pain in my thigh before starting treatment. I finally figured out that it was nerve pain from my sciatic nerve. What relieved it was stretching out my hip in that side of my body.

The stretch is done by laying in your back with your knees bent. It’s important to keep your lower back flat against the surface you are laying on. You can practice this by tightening your abdominal muscles and feeling your lower back press against the floor.

While keeping your lower back pressed against the floor, grab your knee and pull it toward the opposite shoulder. You will need to keep some muscles relaxed to do this.

You should feel a stretch in your hip area.

Ideally you could see a PT who could guide you in this exercise.

I found keeping the hip stretched out relieved my pain.

bennevisplace profile image
bennevisplace

Your doc may have attributed the thigh pain during treatment to subcutaneous injections of G-CSF / Filgrastim, whose listed side effects include leg muscle pain. FCR wouldn't do that.

If you still have the same pain 6 months later, there's probably something else going on. Your bio lists back pain - maybe a connection? If so, the sciatic nerve, as suggested by CW above.

AnneHill profile image
AnneHill in reply to bennevisplace

The problem with cll or its treatment is that we dont know if that is the cause of other health problems. I have had back surgery and always blame pain in my back and legs on that. I think your GP would be the first place to start. They need to excude other things. That way you can work on ways to help the pain. Anne uk

bennevisplace profile image
bennevisplace in reply to AnneHill

Sure, the GP is best placed to do the physical exam, order further tests, refer to specialists etc. In today's UK it can all take a while...

AnneHill profile image
AnneHill in reply to bennevisplace

Its difficult I admit. I woke up this morning with a uti and rang the doctors. They are ringing me back and hopefully prescribing antibiotics. I always tell them I am immunocompromised and have chronic leukaemia. Have to lay it on. I hope I am not in pain all Easter. To make it worse I cant drive. I have epilepsy and a broken bone in my foot. My step daughter is coming round later. Im hoping she will collect my prescription.

bennevisplace profile image
bennevisplace in reply to AnneHill

Oh dear, I hope you get what you need to make for a comfortable Easter.

AnneHill profile image
AnneHill in reply to bennevisplace

I got the antibiotics and I am so lucky as I got them collected and a friend offered as well. My hubby is away and everyone thinks I cant look after myself. The broken foot has made climbing the stairs risky. Iv had my instructions not to carry things up. I am really grateful because Im not used to being on my own. I have been taken out to lunch twice, had a visit yesterday and have my son and family coming today.I realise it wouldnt be like that normally and for those on this site who cant get out it must be awful. Some are happy on their own but doctors appointments and collecting things is hard if you have mobility issues. Im not being patronising. Its been a lesson for me.

Hrdy - please get a blood test done TODAY - GP, A&E, or somewhere. Tell them that you have CLL, and tell them how bad the pain is and how long you have had it. Before going do NOT take any aspirin based pain killers. This pain may be from a muscle or something, and many people assume it is a pulled muscle. My cousin had this pain, and insisted she must have pulled a muscle. It turned out to be a blood clot in her leg. It moved to her lung and she died. I promise I am not scaremongering. But pains in legs are really important to have looked at.

Take care, Liz in Manchester UK

AnneHill profile image
AnneHill in reply to blowinginthewind

Thats really frightening. I didnt think of that. A word of warning. Anne uk

blowinginthewind profile image
blowinginthewind in reply to AnneHill

We all told my cousin to get this looked at properly. But my mum was a major catastrophist, and my cousin didnt like her much, and ignored my mum. The clot moved to her lung, her GP said it was asthma and gave her an inhaler. When my dad phoned to say she had died, he said that it was from an asthma attack. She was very high risk of DVT for various reasons. But thigh pain - I always suggest people go to doctor or A&E.

Liz in UK

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