Muscle pain

[vickylou01]

I have urticarial vasculitis and am getting increasing what feels like muscle pain. I am in pain walking as I am getting bilateral calf pain, does anyone else get this? I am taking 40mg Prednisolone and Naproxen amongst others.

[PMRpro]

Does the pain start after walking a short distance, go away when you rest and then come back when you walk again? If it does it is something called claudication and you should really be referred to a vascular clinic to find out what is causing it. Patients with vasculitis are more likely to develop such problems which is due to the arteries being narrowed for some reason and not enough blood getting to the muscles when exercising. There are some causes that can be dealt with with stents or surgery but only a vascular specialist can decide that - it isn't the same as the vasculitis clinic. The fact you have bilateral pain suggests the narrowing or blockage is quite high up so a specialist should have a look.

[vickylou01 in reply to PMRpro]

Thank you, yes the pain is when walking even short distances (its like the muscles get really tight) I do get pain at night when I get into bed or sit down but this is more like restless legs. I am getting pain/numbness in my arms/hands too, it is not the joints but seems to be muscle and tendons. I am waiting for an ultrasound of my arms to look at the tendons and they will offer me cortisol injections into tendons if needed.

[PMRpro in reply to vickylou01]

Is the night/sitting pain the same as the pain you get when walking? If so you really do need to see a specialist about it and fairly soon.

[vickylou01]

I am seeing my gp today so will ask about the vascular specialist. If it is related to the UV will the steroids I am on not help?

[vickylou01 in reply to vickylou01]

would this be related to the pain in my arms too? Its hard to explain to people about the pain, if you can't see a problem people can't understand it.

[PMRpro in reply to vickylou01]

No, the steroids won't help if it is peripheral vascular disease. My first thought was it might be polymyalgia rheumatica until I saw you were on a fairly high dose of steroids. And yes - if the arm pain is appearing when you use them either for repetitive actions or a sustained action (holding a phone to your ear for example) it could also be claudication.

[Hidden]

I haven't been diagnosed with Vasculitis but I do have bilateral pain/ache in my calves most of the time at present. I have RA and Hypothyroidism and rashes that come and go on my legs which one GP feels must be a kind of Vasculitis secondary to my RA. But mine doesn't worsen while walking - which sounds more serious - mine is bad after exercise and I get a severe tingle in my legs with a sensation as though my legs had been dipped in cold water. I see the rheumatologist again a week tomorrow but I doubt he will give me any answers that make sense.

I hope you get answers very soon .

[vickylou01]

Thank you for your replies, My steroid dose was only upped 3 days ago from 20mg to 40mg as 20mg was not controlling the urticaria. My consultant is posting me a reduction regime to find the optimal dose and then I have the choice of Dapsone or Hydroxychloroquine. The Rheumatologist passed me onto dermatologist as she was happy it wasn't joints but at the moment no one is looking at the muscle pain. Seeing GP today has getting awful insomnia to the Prednisolone, waking every 30 mins throughout the night last night and I take piriton before bed but does not help.

I am confusing for the consultants as my bloods are good ESR/CRP normal, Homogenous anti-nuclear abs but ENA and dsDNA normal, complement normal. My only abnormalities are all of a sudden my Hb and B12 have dropped also vitamin D and calcium are low.

[vickylou01]

Anyone have any ideas what could be causing me so much pain when my inflammatory markers are normal? has anyone else ever had normal ESR/CRP and pain in arms and legs - not joints but muscles and tendons. Tonight I am just so upset I know the pain is there yet I feel as though because my markers are normal it is assumed it is mild/not there.

[PMRpro in reply to vickylou01]

I have PMR which is very similar to what you describe in terms of symptoms. One of the usual tests is ESR/CRP, looking for inflammation but I, and another lady on the PMR forum on HU, have never ever had abnormal results however bad we were. About 1 in 5 patients with PMR (polymyalgia rheumatica) or GCA (giant cell arteritis) which are both vasculitides have normal "acute phase reactants" which is the posh name for them. Some people just never develop this reaction to inflammation - no one knows why. You almost certainly don't have them, they both respond to pred at the dose you are on - but yes, you can have inflammation and pain without high bloods. Have they checked for other arthritises? The same applies there - you sero-negative cases.

[vickylou01 in reply to PMRpro]

Thanks, Rheumatoid Factor and CCP are both negative. My only abnormal results are Homgenous ANA, low Hb, B12, Ferritin, Vitamin d and Calcium.

[vickylou01 in reply to vickylou01]

I am getting so down with it all, I have spent the last 4 days barely being able to walk, my legs have got worse the pain in now inside my knees so it hurts to stand too. This morning eating my breakfast the top of my jaw hurt by my back teeth and went numb, then my whole jaw was stiff and couldn't open properly, it wore off after about 10 minutes?

[PMRpro in reply to vickylou01]

If that jaw pain continues or you get any scalp pain, new headache or any visual problems at all (blurriness, double vision, loss of vision, feeling there is a curtain in front of your eye) please go straight to A&E. The symptoms you describe could all be indicators of GCA and it must be checked for. Untreated there is a risk of blindness.

I know I said it was unlikely since you are at a high pred dose - but it isn't quite high enough to prevent advanced GCA. It is far better to be safe than sorry.

[vickylou01 in reply to PMRpro]

Thanks I just wish the palpitations would go as well, they are driving me bananas

[PMRpro in reply to vickylou01]

In that case - please go to the doctor asap, if you can't get someone to take you this afternoon then call an ambulance. All the symptoms you are describing could also be caused by an arrythmia of the heart. If your heart isn't beating properly the blood supply to your entire body is possibly inadequate and could cause all sorts of strange feelings. High dose steroids can increase the risk of it starting up.

One visit to A&E or one call to 999 too many is worth it if it saves you getting worse.

Please let me know how you get on.

[BronteM]

Hello - so sorry to hear that you are in such pain, and that you've got it in your arms and your legs.

My claudication is only in my arms and shoulders, and I feel it mostly whenever I am doing things like changing pillowcases, hanging up washing, reaching up for something from a high shelf. I am OK with it now...I know what causes it, and I know it goes away when I rest my arms. I've only had it occasionally in my thighs, so know it can't be much fun when you have it in lots of different places, or in your joints as well. Btw, my vasculitis is large vessel (Takayasu's)

But, one of the reasons it took ages before I was diagnosed was because my blood results were 'fine'. The clinic now say that I have very subtle changes in my ESR/ CRP, but they are there and need to be monitored. It could be the same with you?

Sorry, can't help with any ideas what is causing your pain, but you can have it with fairly normal blood markers. Good luck with the ultrasound; it was one of the most useful scans that I had.

[vickylou01 in reply to BronteM]

Thank you my ESR was slightly raised about a month ago but has now gone back into the normal range and they tend to ignore isolated raised results. How were you diagnosed in the end? I have been diagnosed with Urticarial Vasculitis by biopsy but they don't think the arm/leg pain is associated.

[PMRpro in reply to vickylou01]

My normal ESR is 4 - so it could be greatly raised and still "within the normal range" which is usually taken as up to 30 or so. Doctors appear not to know that the "normal range" is what is found in 85% of the population. The other 15% are either higher or lower. Statistics...

[BronteM]

I had no pulse in either arm, and very changeable blood pressure, and both are a bit of a giveaway, though it took ages before anyone thought that either was serious. But my first ultra sound showed up several blockages in both arms, and later CT and PET scans confirmed further narrowing/blockages in my shoulders and aorta and carotid arteries. Now down to 5mg of prednisone and rituximab every six months. But arteries in my arms are very scarred so I'm unlikely to ever lose the claudication there. Oh, and also had a temporal artery biopsy, but that was clear.

[vickylou01]

Thank you all, I am now waiting for my 24hr ecg and scans of my legs and a possible muscle biopsy. The pain in one of my calf's is much worse today and I'm in a lot of pain even lying/sitting. Painkillers seen to work for the pain in my knees but this calf muscle pain and and tightness seems a lot more resilient, the calf is not hot or swollen though.

[vickylou01]

The jaw pain when I eat has happened for the second time today, I forgot to mention this to my rheumatologist, could this be important?

[vickylou01]

it happens in the bone above the top molars and close to my ears it hurts and then kind of goes numb? could be be migraine related as I have had a headache all day?

[Christophene47 in reply to vickylou01]

I realize this an old post. I hope by now you have an answer to your question because what you are describing is an important symptom for GPA or GCA. I do hope you brought it up with your rheumatologist. I have exactly the same symptom, but just on right side.