? My symptoms not typical.: I first posted in a... - PMRGCAuk

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? My symptoms not typical.

Cwmidwal profile image
5 Replies

I first posted in a blog on 5 Jun 2013. I saw my GP the following week ESR and CRP at very normal levels. He waited waited for results of Vitamin D levels as requested by a hospital doctor for an unrelated problem. If low they could have caused muscle pain and twinging. I got these on Tuesday and they were normal.

GP was reluctant to resort to steroids and meanwhile gave me Gabopentin which helps keep the pain down a little bit. I still have muscle twinging and pain but I have not had any of the really bad muscle stiffness that is usual for PMR. The twinging gets worse after rest or activity such light work as tying in plant shoots and knitting. Particularly at 4/5am.

Has anyone else experienced the pain and twinging without stiffness?

I will have to go back to the GP to review the medication in a week or so and I want to be informed about what the next step to follow in any investigation might be. From your pooled experience that is. I am fully aware this really needs a medical input.

I don't want PMR but in someways as I still have the pain and discomfort at least if I had a diagnosis I would know what I was up against. I feel right now I am back in limbo again.

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5 Replies
polkadotcom profile image
polkadotcom

As far as I was concerned the stiffness was the main problem and the pain arose from trying to move those affected muscles. A simple statement which might make it sound minor, but the pain caused was immense and often unbearable.

I do think further checking on your Vit D results might be in order as both doctors and labs have very different levels of 'normal'. I believe now they think that all 'senior citizens' should take a Vit D supplement, particularly through the Autumn and winter months. Considering the weather over the last couple of years with very little sunshine on offer, I feel anyone could be Vit D deficient.

I'm a little surprised you have been given Gabapentin. In low doses it is usually used for nerve pain (I take it for peripheral neuropathy). Could your twinges and pain be nerve related rather than muscle pain?

I do hope you get a diagnosis soon, it is so much easier to fight a known enemy!

happyfacesometimes profile image
happyfacesometimes

I was automatically put on folic acid as these levels can be low when you have fybromyalgia or PMR. Or at least that's what the doctor told me. Remember Vitamin D can be taken with calcium as a double whammy. Calcium is more effectively broken down with vitamin D. Although I am by no means an expert.

EileenA profile image
EileenA

My ESR levels have never been particularly high and I was only put on steroids in Dec 2010 after breaking down at the GPs surgery. I had severe pain from April 2008 (age 49) and struggled to dress myself. There isn't so much stiffness in muscles, just pain. I had a very low Vitamin D reading and GP gave me a course of tablets and the last test was ok but am going to start a supplement. After reading up on PMR it seems you can still have normal ESR levels when you are younger. Now down to 5mg tablets and trying to get lower by reducing by half mg a month, I have done this before though and couldn't walk upstairs at 2mg so had to go back to 5mg. Hope this helps, we are all so different.

missrat profile image
missrat

I also had normal blood results and my main problem is morning pain and mild stiffness, primarily around my buttocks and thighs. I'm planning to increase my vitamin D3 supplement.

Ann

Pipistrelle profile image
Pipistrelle

ESR isn't generally very reliable as many things can influence it; some have PMR with normal ESR. CRP is considered a more reliable indicator.

I would be asking fora referral to a rheumatologist. Gabapentin helps neurological pain rather than PMR -- it isn't to my knowledge ever used for PMR but is used for problems like fibromyalgia. Pain without stiffness might also indicate fibromyalgia.

My mother has these kinds of pain with fibromyalgia herself, so that might be worth looking into.

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