'Growing Pains' in arms and legs - Hughes Syndrome -...

Hughes Syndrome - APS Support

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'Growing Pains' in arms and legs


I have got really bad aching pain in my arms and legs/knees, I can only describe them as being like growing pains. Is this related to aps, does anyone else get these and if so have you found a remedy that stops the pain! Sorry if this has been asked before but I am new to this.

5 Replies

Hi Apsnotfab, I am still battling to get an official diagnosis, my GP seems to be in denial about it, although I can tick every symptom on the Hughes list and have a family history of sjogrens and thyroid, he was reluctant to say the least to even test me for it. I am waiting for some blood test results but I'm pretty sure he hasn't done the right ones. In the meantime I am getting worse by the day, bad headaches, poor memory, brain fog, really bad joint pain in one shoulder (so bad I can't sleep), so so tired all the time, aches in arms and knees, really weak legs. I had two miscarriages years ago followed by two children and have had livedo for at least 21 years. I am just getting desperate I feel so ill all the time.

Hi PepperT

I have primary APS, diagnosed in 2002, and I'm certainly suffering from pains in my legs and knees, for over a year now.

Best wishes.



Do introduce your GP to our charity, give him the link: You will also be able to show him/her on that your nearest specialist he could refer to! Mary F x

Specialists in your area under 'self help' section! hughes-syndrome.org/self-he...

Hopefully I will get the test results by the end of this week but as you say, if he hasn't done the right tests I'm no further on. Surprisingly this morning it seems to be a good day, no headache or aching legs yet so I'm feeling brighter. I am seriously thinking of changing my surgery, how's this for an indicator of how good they are... serious pain in one shoulder and radiating pain and weakness in my arm for six months, nobody examined me but immediately diagnosed a frozen shoulder, two steroid injections directly into the site three months apart, no improvement. Last week told my GP that my arm felt like it was slightly out of place and frequently 'clicked' still no examination but another injection followed. Last night I fell in the house and my automatic reaction was to put my arm out, crashed into furniture with bad arm outstretched, pain was so bad I ended up in tears.... this morning full rotation of arm, virtually no pain apart from a dull ache. If they can't spot a partially dislocated limb what chance have they got of finding something that isn't so obvious!!

Hi there, I am at the moment suffering from such aching legs and pain relief does not seem to be working. I am on warfarin but have had a lot on just lately so perhaps the strain from that is not helping. Must just say, I was diagnosed with primary APS about five years ago, had a great Neuro Consultant. He sent the obligatory letter to my GP, who stated that he had not heard of APS and he must look it up. Six months later I went again and he said exactly the same!!!!!!!!!!! For goodness sake, so your shoulder does not surprise me at all. Wait for your diagnosis, could your GP refer you to a Rheumatology Consultant? that might be a start. Good luck and hang on in there, the other replies on your question are, as usual, straight to the point. We all do try to help.

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