Leg pain and stiffness: In relation to... - PMRGCAuk

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Leg pain and stiffness

Elizcarroll
Elizcarroll

In relation to dontwannabesick, and she mention about painfull legs, and as PMRPro, I need to start a new post.

I started with PMR, and then GCA, I'm coming up to 4 years GCA, down from 80mg, well got to 2.5mg but back up to 5 mg,

I first started with stiffness and pain in neck, and same in thighs, until couldn't get up off a chair or get in or out of bed,

I mean sometimes I don't know what's normal anymore, with pain that is, the pain and stiffness in my neck is gone now, but had it for about 3 and half years, just one day I noticed it wasn't there anymore,

I walk every day, but do have stiffness and pain in legs, I noticed I can't go down on my hunkers???? Would this be normal????

my attic is converted, and have storage space so needed to get Christmas stuff out,

I had to crawl into the space, as you can't stand up obviously, but at one stage I couldn't move my legs with pain and stiffness, I knocked down for help but no one heard me😠 So was there for a while, before I struggled out,

Just like to know how is everyone else's Legs???

I think I have one friend that will ask me how I am, but no one else, but maybe it's the case, with any illness, people give it a time frame, like you must be over it by now,

In a way you do start to doubt your own pain, not that I want to talk about my illness, but it would be nice if someone ask you how you are😏 Appreciate any feed back

42 Replies
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Hi Eliz

My PMA started with leg pain and I too was reduced to not being able to do anything. It spread to shoulders and arms. Now that I am on pred for three months only I am completely free from symptoms in arms and shoulders but not legs though I am much much better. I think this is common but it is not the usual nonetheless.

Elizcarroll
Elizcarroll
in reply to Harbel

Thanks for replying so quickly, it's good to know what's normal for us😏 it's a strange illness, I didnt get it in my shoulders for about a year later, but seems to be all in my legs, maybe it working its way out😀

I was diagnosed with PMR first and I was on 20mg, but after 2 weeks they reduced it down from 20mg to 12.5mg in 8 days, I think they reduced me to quickly, that's when I got the GCA i was hospitalized, and had a positive biopsy for GCA,

Just wonder if it's the illness or the pred, that's causing the leg pain,

How much pred are you on now Harbet? Thanks

Harbel
Harbel
in reply to Elizcarroll

I was diagnosed by a neurologist and was informed by his secretary on a Thursday who said he would send out a prescription. I was so bad at that time that I did not want to wait over the weekend and went to my GP who had pity and gave me a prescription for 30mg which was great and pain was gone and full movement restored in 16 hours. When the prescription came from neurologist it was for 20 mg and so I went on that after three days on the 30 but the 20 was not enough so I self prescribed 25 which cleared the symptoms and stayed on that for six weeks. I have tapered since and am on 17 from this morning. For me my leg pain - I think it is the disease as it seems to come maybe five days after I have dropped my dose, and gets worse unless I take at least one higher dose to clear it. I am very new to this so don't put much faith in my experience!

Elizcarroll
Elizcarroll
in reply to Harbel

Hi Harbel thanks for all that, feed back just great,

It's hard to know who should be looking after this condition?

I was diagnosed by a rheumatologist, I was lucky I was in A n E and Doctor asked rheumatologist to come and see me, and I was diagnosed with PMR and then GCA,

When you say your symptoms get worse is that after you taper down, and how much would you increase your dose? To feel ok again?

I know it takes about 5 or 6 days to see the effect when you increase your dose,

Wishing you a happy, healthy, and pain free new year. Eliz

Harbel
Harbel
in reply to Elizcarroll

I think a rheumatologist is the right specialty, my doctor took my suggestion to refer me to a neurologist as I had been diagnosed with vitamin b12 deficiency with intrinsic factor meaning this autoimmune response stops me from absorbing it from food. It also affects neurology and we were not thinking of an additional disease (pmr) at the time.

I reduced from 25 to 22.5 to 20 all ok. But 20 to 17.5 went OK for maybe five days then the symptoms came back in legs and increased for about four days. So I reverted to 20 for one day and then alternated between 20 and 18 for a week, then 18 for a week. Then 17.5 with no problem for two weeks and this day to 17. I split dose morning and lunch about 2/1 and find this gives me 24 hour pain free whereas single does did not.

Elizcarroll
Elizcarroll
in reply to Harbel

Pred It's our best friend, the way it takes the pain away, I remember in the beginning, I couldn't get in or out of bed, I remember I took the pred and went to bed, and then when I woke up next morning, I could get out of bed, I couldn't believe it, I just cried. It's all about getting the inflammation under control, take care

Mine started with legs being unable to pick up anything off of the floor, get on under pants, step over my pet gates. Very scary. And I felt systemically sick. Very hard to explain to someone else. I have started splitting my dose and taking some at night. Otherwise my hips are stiff and painful for at least 2 hours. My tailbone was really hurting but now it's better. I care how you are feeling. I think people get weary of our negative reports and don't know what to say. Hope you have a good start to your year. ❄️

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to bunnymom

Please don’t think we get weary of negative reports. Although good ones are nice as well!

We are here to answer as much as to ask; but we don’t all get the same aches and pains, so sometimes we don’t have anything advice to give, but it’s not because we don’t care!

I never had any “leg” problems with GCA, so can’t advise with knowledge - had plenty since, but that’s another whole new story. 😳

bunnymom
bunnymom
in reply to DorsetLady

Oh I was referring to those outside our group. Friends family etc. If this forum couldn't take negative news we'd be done for!

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to bunnymom

Too true😳

Hi DorsetLady that's interesting you didn't have any leg pain, when I was at hospital at one of my appointments, might have been over a year ago. A doctor said he thinks I probably never had PMR, that it was GCA all along, I think he referred to leg pain, that he said goes with GCA

But I'm thinking now could my GCA be gone and I have PMR now??

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Elizcarroll

Who knows whether it’s GCA or PMR or mixture. All I know is I only had GCA - shoulder pains initially, followed by head problems.

GCA doesn’t normally affect lower body.

Thanks DorsetLady it's interesting, I started with groin, thigh pain and stiffness, and neck pain and stiffness, and pred did seem to be controlling it until they were reducing me down from 20 mg to 12.5mg in 8 days, and all hell broke loose, jaw pain and stiffness, severe headache and for a time 60mg was ok, but then my sight went, but I was so lucky it went 3 times and came back, ( I know you were so unfortunate here X) my dose was increased to 80mg,

So does anyone know if different muscles are associated with GCA and PMR ? I think it was consultant in hospital told me the thigh pain was more to do with the GCA???

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Elizcarroll

Hi,

This is something I found on charity’s web page - hope it explains differences -

GCA is classified as a large-vessel vasculitis but typically also involves medium and small arteries, particularly the superficial temporal arteries—hence the term temporal arteritis. In addition, GCA most commonly affects the ophthalmic, occipital, vertebral, posterior ciliary, and proximal vertebral arteries. Medium- and large-sized vessels that may be involved include the aorta and the carotid, subclavian, and iliac artery.

Polymyalgia rheumatica (PMR) is an inflammatory disorder typically seen in older adults that causes widespread aching, stiffness and flu-like symptoms. It is more common in women than men, and is seen more often in Caucasians than any other race. The average age of onset is 70 years, and it is rarely seen in people younger than 50. PMR is a self-limiting condition, lasting from one to five years; however, it varies from person to person. Approximately 15 percent of people with PMR develop a potentially dangerous condition called giant cell arteritis (also known as temporal arteritis).

The cause of PMR is uncertain but it is believed to be an autoimmune disease in which the body’s own immune system attacks the connective tissues. Genetic and environmental factors (such as infections) are thought to play important roles. Because it is rare in people under age 50, its cause could be linked to the aging process.

Thanks DorsetLady that's really interesting, really appreciate this

PMRpro
PMRproAmbassador
in reply to Elizcarroll

Fig 1 in this academic.oup.com/rheumatolo...

shows how GCA and PMR relate. GCA theoretically doesn't affect muscles - it is restricted to the arteries in the head. PMR affects arms and legs, mainly proximally, nearest to the trunk. Large vessel vasculitis (LVV) is the joiny-uppy bit.

The only thing I can think of that your doctor meant is that claudication pain in upper legs may be due to vasculitis in abdominal arteries - but it can't be proven to be GCA as a biopsy is required for that and it isn't easy to do one except on the temporal artery which is easily accessible and you can do without it.

What can be identified is inflammation affecting various arteries throughout the body using PET-CT but it is only reliable when you are on a lowish dose of pred.

Elizcarroll
Elizcarroll
in reply to PMRpro

Thanks PMRpro. I had a positive biopsy for GCA, DorsetLady just sent some information regarding GCA, and the arteries it affects, and notice the Iliac artery, and this provides the main blood supply to the legs and blood to the muscles, so it appears legs would be involved in GCA,

PMRpro
PMRproAmbassador
in reply to Elizcarroll

But would generally be referred to as large vessel vasculitis

Thank you so much bunnymom, and thanks for caring😀 Ye I remember not being able to put on underware or trousers or socks, would you be able to go down on hunkers? This is unbearable for me, just couldn't do it. Thanks you take care and hope you have a happy, peaceful and healthy new year

You know the question that is always asked... Are you taking enough pred? Maybe up one or two and see if it helps?

Ye I did increase from 2.5 mg to 5mg but really don't think it made any difference, that was over 2 weeks ago, you just wonder at this stage is the pred causing the pain???.

Bunnymom do you have GCA and PMR?? Thanks

No just PMR. We are always trying to figure something out it seems.

Hi there. I have GCA and PMR for 3.5yrs. In November my mobility was very poor. Later in November I was diagnosed with a GCA relapse, this time it was in my aorta and the other large arteries. I am back on high dose steroids but now can move pretty well. The thigh muscles in particular have become good again. I thought my mobility problems were arthritis.

Have you had your CRP checked?

Thanks granny-b for that, it sounds like me😂 What test did they do to diagnosed a relapse, I was obsessed one time getting my crp and ESR tested, because they did always reflect on pain I was having, but in last 18 months they have been normal, I was back with rheumatologist the end of November and crp 2 and ESR 6. I sometimes thing if it's arthritis setting in? What dose did you go to to feel the Benefit?? thanks it's great to get the feed back wishing you a happy and healthy, and pain free new year

I had raised CRP so rheumatologist did ultrasound, I was on 1mg prednisolone. Finding nothing he booked me for a PET scan dropping the prednisolone. The PETscan showed the GCA inflammation.

I was put on 50mg prednisolone and 20mg methotrexate. My rheumatologist manages my prednisolone etc dose. I decided a long time ago that I trust him and only make changes with his ok.

Poor you are you still on 50mg? It's hard having a relapse having come a long way, that must have been a bit frightening, at least inflammation is under control now, take care

Hi Elizcarroll

Thanks for sharing. I can totally sympathize with what you are saying.

I have a lot of thigh problems. If I stand too long they start to shake and then go weak. Where the thigh meets the hip gets very very painful and stops me in my tracks. I have had both of these problems for 2 years, since it all began. I have some neck and shoulder pain but not bad, that pain cleared pretty early in the course of the illness.

I totally agree that sometimes I start to question my self and wonder is it all in my heard. Nope, it is in my body and my body can be pretty miserable at times. It doesn't really bother me that people don't ask or seem to care. I have lived with Fibromyalgia for 20 years and now Pmr for 2 years. How much can I expect people to keep up or care.

I pretty much stay silent with people other than my husband and 1 close friend.

Have the best New Year possible

Lin

Elizcarroll
Elizcarroll
in reply to Linny3

Thanks Linny3 for caring, and your feed back, poor you having fibromyalgia for 20 years, I don't know much about that, but it's unexplained pain am I right ? And then getting PMR on top of that, dosn't seem fair,

I just don't know what is Normal any more?? It is frustrating when you have set backs, when you say you have pain where the thigh meets the hip, would that be your groin?? cause I had a lot of pain in my right groin,

But that's gone, neck stiffness and pain and shoulder pain seemed to disappear gradual, I think.

Lately I'm getting cramp in the front of right thigh, and I can't squat, as I found out taking out Christmas decorations, and I know I'm better off moving😀 I do love walking😀

To be fair, I never like talking about my illness, cause talking about it and thinking about it makes it worse, ( that way it's great coming on this forum cause you can rant and rave and people are great ) so people maybe pick up a body language that you don't want to talk about???

But would be nice to be asked how you are ONCE in a blue moon😀

Have a happy, and healthy and pain free new year. Eliz

PMRpro
PMRproAmbassador
in reply to Linny3

Has anyone considered you may have trochanteric bursitis? That can cause the sort of groin pain you describe. They should also check to be sure it isn't OA that is getting to the stage of possibly needing a hip replacement.

My PMR started with groin pain that was very disabling. Over the almost 3 years that I have had this, I have noticed my symptoms shifting, from neck and shoulders to legs and pelvis. Then there are the side effects of meds to separate out. What I have lost, and good riddance, is the unwell flu type feeling that was always there, this gives me the first ray of hope. My knees are swollen and I am hobbling about, if I stand for any length of time I get severe low back pain. However, I think this pain is arthritic in nature and is more to do with unusual physical exertion ( two grandsons over Christmas). Oddly, I can get up from a squatting position, and I can touch my toes, with straight legs. I could not do this in the early days.

Sorry this turned into a bit of a ramble. I am sorry that you laid undiscovered in your attic storage space, it must have been worrying. Find another place for them!

We are always interested in how you are on here. Nobody asks how you are, I agree. ( in case we tell them, at length). Take care x

You either need more Prednisalone to control the inflammation, or like me, there is something else going on. 4 years is not long for this disease, unfortunately. Jane

Hi sheffieldjane thanks the feed back is great, ye you just reminded me of groin pain I had as well, in right leg, found it difficult getting into the passenger side of car, I couldn't lift my leg up, putting on trousers was hard, but just remember one day thinking, oh that groin pain is gone and neck pain and stiffness is gone and shoulders seem to be ok,

Just my legs, sometimes my right hand bothers, but like you said maybe that's a separate issue, I like to think the illness is moving down my body, and going to make its exit soon😀😀

Not being able to go into a squatting position, I wonder what muscles are affected here. I have upped my pred, over 2 weeks hasn't made a difference,

I hadn't realised how bad this was until I was in attic, and it was like my legs locked and unbearable to move them😂 Hope your new year is a healthy happy one

The fluey feeling is something I dread most. Jane, you never ramble, and I appreciate your posts.

Hello Elizcarroll, I started with a pain in my right wrist, which turned out to be the start of my PMR journey. Then one morning , the full blown version kicked in. Everything was unbelievably painfull. Prednisolone did it's miracle, and in 6 hours everything became a lot easier. Diagnosed with PMR June 2018, followed a few weeks later with GCA. Over the last couple of months THIGH MUSCLE pain has been quite a problem,( also tingling numbish feet ).The thighs can start hurting after just a few steps, or take 5 minutes to start, standing still is also a problem. It gets more painfull the more I try to go on. Each step feels like walking into the corner of a table, Sure you know what that is like. It is starting to get less intense now though. So I hope your legs will be easing of soon. I'm sure it's not just you and me though. Trevor.

Thanks Trever great to get the feed back. Like I think the pain and stiffness is mostly in my thighs, like I love walking, but sometimes, my leg feel like 2 concrete blocks I'm dragging along, but then again, sometimes they can feel light, and I flow along.

I also had that tingling and burning sensation in my feet but also had it across my back, it felt like sunburn at times. So must be side effect of pred😏 cause I was on this forum to find out if anyone else had this. Hope you have a healthy and happy and pain free new year

I sometimes have the feeling of sunburn!! in my lower back, thighs.....it’s very uncomfortable. I find it responds to light massage with moisturiser, if you can find someone to reach the awkward bits.

My PMR started 3&1/2 years ago with pain and stiffness inthighs and groin and sleep disturbance, developing into being unable to move in 2 weeks. Then saw a locum at GPs and he tested for everything under the sun and diagnosed PMR within 5 days and prescribed 15mg Prednisolone and Adcal......relief in a couple of days. Since then a long slow journey that ONLY fellow sufferers can understand. I still have ‘concrete legs’ some days.

Take care. Valerie

Hi valnvaughan first I wish you a happy and pain free new year, it's great that people understand and know what your talking about. Thanks,

I started off with neck and pain stiffness, and like you I had groin and thigh pain and stiffness, and couldn't move.

I was first diagnosed with PMR and when I was reducing (on advice of consultant, ) down from 20mg to 12.5mg in 8 days.. And then all hell broke loose, I was diagnosed with GCA and I was hospitalized, and had a positive biopsy, my pred was increased to 60mg, and I was ok for a couple of days, but developed severe headaches, and then lost sight in right eye, but I was so lucky it returned, I had 3 episodes of this, really frightening. My dose was increased to 80mg.

I've come a long way since then

I just have thigh pain and stiffness, only on movement and have increased my dose from 2.5mg to 5mg but hasn't made any difference.

I know how you feel about concrete blocks, some days my legs feel like tgat an then some days they can feel light, hope we all get to that pain free station😀😀

PMRpro
PMRproAmbassador
in reply to pmrgcavictim

Has your GP requested vascular studies to see if you have any blood flow problems causing this sort of pain?

Elizcarroll
Elizcarroll
in reply to PMRpro

No PMRpro they haven't , but might be something I could ask the rheumatologist, they did say to contact them when I'm having pain, in other words they want us to be singing off one page, they don't want me increase my dose without telling them😏 but I do write it all down when I do increase. Thanks for that, hope you have happy, healthy and pain free new year Eliz

pmrgcavictim
pmrgcavictim
in reply to PMRpro

Hello again PMRpro, and thanks for more of your wonderful info for all of us on this site. I had been wondering about blood flow, as it sometimes feels like leaning on an elbow and feeling the pins and needles go down an arm, but the pins and needles, then numbness start in my toes and feet and go up as far as my knees. I should be seeing Rheumi in a couple weeks, might have to remind him I am due though. I might have to squeeze a visit to my GP if it looks like it might be to long to see Rheumi. Hope you are keeping as well as you can be, and wishing you a much better 2019. Trevor.

.

Sounds familiar. Good luck with your GCA treatment. Hope all goes well for you. Not everyone has the problems discussed on this forum but you know where to come if you do.

Hiya, and Happy New Year.

I've been suffering with my legs since February, my neck and shoulder problems started a long time before that.

I have only been taking Pred for 15 days so I am not in a position to advise but I can definitely relate to your leg troubles. I am also confused as to what is causing what as I had terrible lumbar stiffness prior to starting the steroids. I have also had 2 hip xrays and a pevic MRI believing I had hip problems as I developed an uneven gait. All were clear!

Regarding Pred, 2 weeks ago I couldnt touch my knees, now I can touch the ground with my legs straight!

A few days ago, I walked too much and really paid the price for about 2 days. My lumbar and hamstrings felt like they were in spasm. I am trying to do what PMRPro suggested and book a Bowen technique session as I believe being so unwell for so long some of the muscles are in knotted and in spasm, this affects my walking an so on, a vicous circle..it becomes so complicated to know what is the chicken and egg! I dont drive, am an outreach worker and am 51 so I need to be able to walk, as we all do!

Hi Mic67 I appreciate your feed back and a happy new year to you, does that mean you have been suffering all this time from pain without the pred. Poor you,

just curious to know now how we are all suffering with our legs, and there probably the most used, which means we are certainly using the muscles in the legs, which should make them stronger, good luck and hope you have a pain free new year.

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