Hip pain and shaking limbs!

[CathT]

Not sure if this is related to my vasculitis. My right leg has a shake when I sit down, my foot goes numb off and on too. Then I woke up with a pain in my hip. Seems to be right in the joint then into my groin. Now it seems my right arm is starting with the same thing. Pain in my shoulder, numb hand and a shake in my arm. I have just got over a flare up so back down to 5mg pred, also take Methetrixate. I'm still not under the care of a hospital just a GP as we have just moved.

[Ayla Volunteer]

Sorry this is happening to you, Cath. This could well be something caused by the vasculitis and, if it were, me, I would want an expert medical opinion as to what was causing what (and I don't mean your GP!). I reckon everyone with vasculitis needs a specialist with experience of vasculitis overseeing their care and, in your case, right now you need someone to say yea or nay as to whether your shakes and pains are caused by the vasculitis and to offer appropriate treatment. Can you ask your GP to refer you, and quickly? If you are not sure where the vasculitis specialists near to your new home are based, I am sure John and Susan Mills will point you in the right direction!

Take care and I hope things soon improve.

[LynneJ Vasculitis UK Volunteer]

Hi Cath

I agree with Ayla. You really should be seeing a rheumatologist.

I say this, as this is how my vasculitis developed. I have since found out that the pain in my shoulder was due to Rheumatoid Arthritis. They didn't tell me that at the time or perhaps I didn't ask. I just wanted the pain to go away!

It might not be the same at all as everyone is different but worth asking about so it can be treated if it is. What type of Vasculitis do you have? Mine is MPA.

Good luck

Lynne

[CathT in reply to LynneJ]

Well they say probably GCA, but as I'm under 50 they are not sure. All my vessels are involved so they can't give me an exact dx. But they said it does not really matter as all the treatment is the same. They also found I have sticky blood which complicates things even more.

[Ayla Volunteer in reply to CathT]

I believe it is not always possible, at least initially, to obtain an accurate diagnosis but I would ask your new specialist, when you see him or her, exactly what tyoe of vasculitis he or she believes you are suffering from. It may be that your previous specialist just did not have enough experience of the disease to know.

Can I ask what happened in your recent flare in terms of what steroid dose you were on because of it and for how long? Also, how quickly was the dose reduced? A too rapid reduction of the steroids can bring on symptoms. It may not be that, but it may be. Have you told your GP how you are feeling now? You really do need to see a specialist!

[LynneJ Vasculitis UK Volunteer]

Poor thing you sound to be having it bad.

I hope you get a consultant soon. It is OK them saying the treatment is the same. Maybe so but you might need differing versions. I have two consultants, one for my lung involvement (fibrosis) and one a Rheumatologist for the actual vasculitis. The chest consultant sends me for lung function tests and xrays to see that it is not getting worse. I suppose that would indicate a flare that the rheumy wouldn't notice.

Perhaps I am just lucky.

Best of luck hope you feel better soon.

Lynne x

[Sarahjh2004]

Hi

Sorry to hear that you are going through the mill at the moment. i agree with what has been written above. The only thing i would say is that treatment can and often does differ depending on the symptoms presenting.

I really hope you get the dx and treatment very soon.

Best wishes

Sarah

[BronteM]

As someone who has been diagnosed with large vessel vasculitis, I can only agree with everyone else -you need to find a specialist with lots of experience. I started off with a diagnosis of Takayasu's, but that was changed to GCA because I am over 50. But I have the same aching arms and shoulders that you have. I also had no pulse in either arm, differing BP depending which limb was used, and aortic involvement, all of which point to Takayasu's; the one thing I have never experienced is headaches! A year ago I was waking several times a night with dead arms, cramp etc, and having to lean over the side of the bed to shake my arms back into life. I still have shaky hands, but that is probably the drugs that I am on. Legs have been fine, though cramp in my feet is a real issue. So some of the issues you have, and I am still getting my head round the fact that an exact diagnosis seems difficult, as most of its have different bits of different sorts of vasculitis.

I hope you have a better picture soon.

[Dave_Buzzey_B]

Hi Kath, sorry your going through a bad time lately but your symptoms sound very much like mine. Which turned out to be a problem that all Vasculitus may get from time to time, called mononueritus. You really do need to see a rheumatologist / Specialist in vasculitus and if you have to force your GP to refer you to the local specialist in your area. Hope things get better for you soon.