LUPUS UK
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My tendons/muscles feel as they are pulling off the bone

Hello, I am new here and wonder if anyone else has my symptoms and knows what's going on... I am going to use muscle here but it may be the tendon... At first I thought I overextended my right arm and just babied it as best I could. So for about 6 months... I would do something as simple as pull the pillow over and bam! The upper muscle in my arm sends shooting pains into my fingertips and everywhere in-between. I can easily use my arm for lifting and such with no pain what-so-ever, but if I move it the wrong way, my whole world stops for about 5 minutes! Then the pain goes away. The muscle always has a very dull pain that heightens slightly when I touch it. ... well another symptom showed up about 1 month ago... it's on the outer muscle below my left knee, just a pain that won't go away, it too feels like I pulled a tendon. Some days are worse then others. BUT the final straw that made me look up what could be going on is the same muscle in my left arm started doing what my right arm has been suffering. Any suggestions on what it could be and where I should start looking?

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How old are you?

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52

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I asked because there have been people on my home forums who have described the pain of polymyalgia rheumatica like that - and you are old enough for it to be possible (you can have it under 50 but a lot of doctors don't believe you can!).

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Think I know what you mean I get similar pain in my calf and have been told it’s the muscles shortening,I know this is going to sound weird but calf stretching is painful but it’s a nice pain? And really helps

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Hi angelsrenew

I, too, think that the problem resides somehow in the tendons. I frequently experience what you have explained here. I suggest that the physicians focus on tendons. They play an important role in autoimmune diseases. I have experienced this for about 40 days, but it seems that the docs seek after anything else, except them. It's time to ask them to focus on tendons!

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Hi angelsarenew

I experience those symptoms in my arms, and legs.

It was only when my calf left leg, then right leg, also suddenly felt like lead heavy weights, that I asked my rheumatologist if it was Sjogrens related. (I am diagnosed Sjogrens ?lupus). I found the lead heavy feeling so disconcerting, and as it spread to my feet, I wanted to know why, as it affected my mobility.

I recently had an ultrasound on legs. At that time, I was told, informally, (guy was lovely and chatty), that the ultrasound showed abnormalities. I was told the problem is either, fatty lipoma necrosis, or benign nodules.

In either case, he didn't seem concerned. So, I'm not going to fret. I do have to wait for my rheumatologist appointment, due around March 2018, to get confirmation. I would also like to know what has caused this to happen. In my case, I wonder if it is due to the inefficient glands, as per Sjogrens related. Oh, joy.

I would mention your symptoms to your consultant. I personally, think it good to know, what, why, how, and if, we can help the problem.

Interestingly, I was told some years ago, that my tendons were short, in my lower legs. I was advised to stretch the limbs, using a scarf around the foot and pulling the scarf sides up. (Ianrussel says something similiar, so you may want to try the exercise?).

Good luck, keep us posted.

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Hello angelsrenew.

I spotted and followed your post a few days ago but it's been a busy house over Christmas and I haven't had time to catch up here at all.

It's a strange coincidence as I have been suffering in a very similar way and had emailed my Rheumy Nurse about this at the start of December.

I have SLE, mild Reynaud's, mild underlying Sjogren's, varicose veins and osteoarthritis in my hips and knees etc.

I have been experiencing an aching in my legs for a while. Sometimes, I've know it's my varicose veins, if I have been on my feet too much etc and I can feel them tightening etc. But the aching in my right leg in particular is different to the VV aching. I have a little growth on my right lower leg, just below my knee. It's been there for years and sometimes I can feel like a root on it??? I have shown this to a Dermatologist who told me that is was a benign growth and nothing to worry about and yes they can have roots/tails, so my sensation was correct, but nothing to worry about. But this more recent aching is different to that too.

Us lupis have so many issues, it's hard to work out sometimes what is related and what's not - is that a red herring, who knows?

I mentioned my legs aching to Rheumy in September this year and she sent me for a DEXA scan - despite being diagnosed with a form of lupus in October 2013, I had never been referred for a DEXA scan for a baseline bone density level, which I understand should be done

So by start of December I was getting a similar feeling in my right arm. It feels VERY heavy, achey and it's weak. I am struggling to do very simple tasks. Unscrewing the cap on my mascara is very hard to do and if I lift or try to do something too hard I get shooting pains. It's ridiculous. I have to stop doing things because of the aching, pain and weakness and it's my dominant arm. I'm a mum to 3 children with them off for xmas and a home to run and it's very frustrating.

So I emailed my Rheumy Nurse and explained everything. Was it bone related - I hadn't received my DEXA scan results, or could it be VV in my arms or osteoarthritis in my arm?

She replied that I would only be contacted if my DEXA scans were abnormal - patients weren't sent results. In fact Rheumy had written to GP and said all normal. She agreed that you can get osteoarthritis in your arms. She said try pain relief. That was that.

So I have been getting this problem with my arm for a month now and it's not getting better, in fact I would say it's getting worse. And I have no real answers.

I get upset by the fact that my local NHS rheumy department are so dismissive. My story is a long and boring one. But they insist I have mild SCLE and refuse to recognise the private diagnosis from London Bridge Lupus Clinic and Dr Kaul that I have SLE and mild sjogren's etc. The local team appear to have no professional curiosity to get to the bottom of symptoms. And no real understanding of lupus.

I have complained of symptoms before and it's the same old, same old. They'll send me for an X-ray or an MRI or blood test and nothing will show up, so they've done their job as far as they are concerned - they've ruled out osteoporosis etc so they don't need to do anything else. They don't seem to realise that not all Lupus issues show up on these types of tests.

They never appreciate the fact that whether your lupus is mild or moderate or severe / high disease activity - it has a daily impact on your life and that if your family's - all of whom have to adapt to your way of life. There just no understanding whatsoever.

So I don't think they will investigate my arm issue any further. In fact my NHS Rheumy has told me she will not be seeing me again!!!!!!

I will see my GP as soon as my kids are back at school. And if that doesn't help, it will go on my list for my next appointment at London Bridge Lupus Clinic.

My understanding is that ultra sound is helpful with tendon issues. I have had a form of tendonitis in my wrists on and off before with lupus and know what this feels like, sharp shooting pains and weakness and aching etc. This is further up my arms, but similar and shooting pains around my elbow. So could it be tendonitis in my arm/elbow? Hadn't though about that.

Thanks for posting and please let us know if you get any answers or any further tests / investigations are done. It's always helpful to share.

Best wishes.

Wendy

(PS I am on Mycophenolate Mofetil 3g a day, 400mg Hydroxychloroquine a day, 50mg of Mepacrine 3 times per week, 2 anti-histamines, 4 vitamins/supplements a day and pain relief, inhaler and eye drops).

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Have you seen a physiotherapist? They should be able to evaluate you and tell you whether it is muscle or tendon issues and suggest appropriate treatment.

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Good advice.

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Ah, Wendy,

The same old, same old.... I could not agree more!!!

I went for a walk with my husband today, half way to town, I had to stop due to very harsh pain in my hips. I thought he would have to go back home to get the car. I persevered, as we do! Completed the walk, but by the time we got home, I was desperate for pain relief meds.

My husband suggested I contact rheumatologist nurse after new year. For one second, I thought about it. Then, I said, what's the point? Last winter, I had antibiotics back to back, four times (interestingly, I've just finished a course for ?UTI, ?vaginal infection, Dr wouldn't give me a definitive answer), Anyway, last year, I was so unwell, the nurse phoned me, telling me I needed another blood test as WBC and Neutrophils very low. She told me she could hear how unwell I was, (sinusitis, chest infection, ear infection...), that she would put blood form in post to be done a.s.a.p. and get me an earlier rheumatologist appointment. She did neither. I had to muster up energy, a week later, to get blood form from GP.

I'm sorry to read you are still struggling. That list for London team is a good idea.

angelsarenew, apologies for getting on the bandwagon points, raised by Wendy, but, it really gets to me, knowing how badly let down we are, with some medics. I hope your doing better now?

A physio assessment could be very helpful? I have found physiotherapy staff to be very knowledgeable and do all they can to help.

I want to wish you both, and all other members HU, and Admin Staff, a Very Happy, Healthier, New Year!! Xx

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It’s a good point re physio. I will check with my GP but I think locally I can self refer???? X

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Hi Angelsrenew,

Welcome to the LUPUS UK HealthUnlocked Community!

We offer a free information pack which you can download or request here: lupusuk.org.uk/request-info...

Have you spoken to your doctor about the pain you are experiencing? It is advised that you consult your doctor as this allows him/her to provide you with the correct advice and treatment (if required). Your doctor may also refer you to a specialist such as a physiotherapist if needed.

Have you had a diagnosis of lupus or currently undergoing one? Around 90% to 95% of people with lupus will experience muscle and/or joint pain. We published an article on our blog about pain management which contains helpful tips and information that I hope you will find useful: lupusuk.org.uk/pain-managem...

People with lupus can experience periods of remission where their lupus is controlled and they feel relatively better; reducing the signs of their symptoms.

There are specific tests and criteria that are required in order to make a diagnosis of lupus, to read about them please click here: lupusuk.org.uk/getting-diag...

Please keep us updated, wishing you all the best.

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