I’m having trouble with my legs. Before Christmas I went onto hydrocortisone to have a Synachen test. Results were I needed to stay on it for support for the time being. However the end of January after being on hydrocortisone for two months. I was having trouble walking in fact I could hardly move my legs I had a pulse of 142 and had the shakes. When I saw the Doctor he said looks like a a flare so he put me back on predisolone 15mg. I was upset I was back to square one but it had to be done. There was no miracle pain relief like I had three years before ( I had extreme pain in my upper arms only) or buzzing like a bee with energy in fact I felt wretched on 15mg pred. I couldn’t walk up the stairs at all my legs, mainly the upper thighs, weighed a ton and they were so weak. A week later no change so the doctor said reduce to 10mg there was still no change. Then one night soon after I had sickness and diarrhea which was so severe that I wasn’t able to take any meds. After a couple of days without meds as I couldn’t keep anything down my husband called 111. The Doctor I saw called an ambulance as I was badly dehydrated and in so much pain. When the paramedics arrived they inserted a cannula and gave me 100mg of hydrocortisone, anti sickness plus pain relief. I was so dehydrated I was admitted and had two litres of fluid and more hydrocortisone. Spent three days in there to get me stable. I thought every time I tried to walk in the hospital why is this so hard with all this steroid I should be more mobile. I am home now but I still can’t get my legs moving. I’m tired and listless too. I’ve never had pain in my legs with PMR before so I don’t know if it is this or not.
Legs feel heavy and wobbly : I’m having trouble... - PMRGCAuk
Legs feel heavy and wobbly
I'm so sorry you are having these problems. But I wonder if it's something other than, or as well as, the need for steroid support? I have had problems resolved by taking more salt, for example, and I know there are problems that a magnesium deficiency can cause. Just suggesting you do a little research and see if any of your symptoms match up with a mineral or other nutritional deficiency. I think it is very possible this tends not to cross a doctor's mind. I only raise this suggestion as the steroid treatment has not actually helped you much this time round. And pred itself can cause us to lose some minerals which makes a dietary shortage worse.
One problem is blood levels as measured in tests are often not indicative of a shortage unless it is extreme as the body will steal calcium or magnesium etc to maintain the levels in the blood. i wish I knew more about this, will not say more as I may not be very accurate. But I do encourage you to do a bit of research on some of the more reliable websites like Healthline or WebMD, etc.
It seems that we have to take things into our own hands. I will certainly look into what you just said maybe it’s the fact that I am not eating that much at the moment. There could be a lack of minerals etc it’s just finding out which. The leg immobility is the worrying thing I can’t seem to get the strength into them. I am going to do what you suggested thank you.
A lack of food won't help...you should have calorie dense food if you aren't eating much.
Yes that’s another thing that coincided with the lack of leg power. I am having Complan drinks and eating small portions.
I have to agree with heron that this may not be pmr. Can you soeak to your goctor again about what else it could be? Others will be along later with maybe some suggestions as to what this may be and like heron has said maybe try looking up your symptoms in relation to a deficiency. Good luck. YBB
I will have to have a word with him after my blood test are done. Trouble is the surgery is shut only to see the doctor if he needs to see you. I expect the results will come from the nurse.
Thank you MrsN. The doctor doesn’t know why I’m like that he just said it could be a flare. That’s no use to me saying that. I just thought that maybe coming off one drug going on to another might have something to do with it. I don’t think it’s that now as it’s gone on to long.
I had a long appointment with the doctor on Thursday but he’s uncertain what to do next. He doesn’t know what’s causing it. With the other complications I have with back problems plus the fact I have lots of meds he said it’s impossible to diagnose. As I said I’ve got bloods tomorrow, thyroid check hopefully it might show up something.
~Sorry to read your recent news.
Being as you have had this awful gastric upset plus not inclined to want to eat much maybe it would be a good idea to consider an electrolyte re-hydration formula to gain some strength again.
I reach for these when in the same predicament - a great pick me up and gets me back on track otherwise we become a bit more vulnerable to the next attack of "whatever" which is lurking around the corner.
Good luck with finding out what is causing the heaviness in legs ~
My husband has just gone to Boots to get some. That’s a very good idea especially as you said it’s a pick me up to. Thank you
Is this the GP saying it is "just a flare"? That's being lazy - it bears no resemblance to a standard flare of PMR (if there is such a thing!) - they are rather overwhelmed by current events but they were not so bad at the time.
Nuigini on this forum has had very similar problems for a long time - I should know where she is at now but I can't remember.
I’m glad you said the words ‘it bears no resemblance to a standard flare up of PMR’ that’s what I wanted to know. Obviously we are not in a good climate at the moment so it looks like I’m not going to get any answers. Thus me writing on here
Oh i hope you get sorted. Never a dull moment. Let us know how you go.
Gosh I'm surprised you've been left hanging with this Suffolklady, especially following the critical state you got into and hospitalization!
As PMRpro has said I have had similar problems with my legs for many years. When I was diagnosed with PMR 6 years ago everyone involved in my care and treatment blamed it on PMR. Well, the issue continued and got worse in the last few years. However, a new GP heard my frustration and did further investigations. I won't go into a lot of detail, but following an MRI of my back, the problem may be coming from lower back. Degenerative changes in the lumbar region may be causing nerve root impingement affecting my legs.
For the last few months I've been doing exercises to strengthen back and leg muscles and have seen definite improvement.
Hope this helps. You never know.
Hello nuigini. Thank you for answering so swiftly. I don’t know if my back could be an issue that is causing this. I had a spinal fusion to my lower back some 6 years ago also a thoracic fusion to my upper back when I was 14. They attached the two together so as far as I know there’s no movement therefore hopefully no degeneration of discs. The more I look on line the more afraid I feel. I have also developed dry month, the shakes more noticeable in my hands but my legs feel like jelly and the upper feeling heavy and weak. The gastro episode knocked the stuffing out of an already suffering. Interesting to read your experience though.
Does your rheumy not have any other ideas?
I was discharged from rheumy but then a couple of weeks ago I get an appointment out of the blue for 30th March. I can’t speak to the rheumy just like that only on appointments.
Make sure he gets to hear on the 30th
She will don’t worry.
Oh dear, you have been through the wringer. Good luck with getting quick investigations and answers soon. I wish I could be more helpful.
I’m not sure I’m going to get quick investigation as I think I’m going to be pushed from pillar to post. If bloods don’t show anything doctors don’t think outside the box. I am having bloods tomorrow but that’s for thyroid which I requested I thought that might be something to explore.
Keep being a strong self advocate and get others in your corner. Request referrals you feel are necessary.Perhaps others on the forum may have other suggestions.
Well to tell you the truth my experience in hospital left me wondering if I was having a steroid. The hospital doctor said it was gastroenteritis it would pass and I was discharged after 3 days. I never ate until the last day as I couldn’t face food. The pain was more controlled with morphine I never noticed I felt any less pain in my legs which I expected would be much better due to hydrocortisone. I was on the equivalent of 40mg of pred. I had a Synachen test just before Christmas but adrenal wasn’t working properly and needed support. Thus the hydrocortisone no pred.
Yes the sickness and diarrhea stopped. I had an anti sickness done by 111 doctor she left and I was sick and bad again. The paramedics gave me one when they arrived and I wasn’t sick from that time on. No diarrhea when I was in hospital. So yes I was better in that respect but I thought this leg and shaking problem might improve but it didn’t. My CRP was elevated so my doctor told me when I was in hospital.
I saw an endocrinologist at Ipswich hospital. After I was down to 5mg with the chance of coming off steroids he organised a Synachen test. I had to go onto hydrocortisone for a month to get a true test. It was an intensive test being in the hospital all day. The results were sent by post and it said I was not able to support my Adrenal gland but to continue with 20mg of hydrocortisone until I was to see him in May. I was not told to inform of any changes.
I never thought to get in touch with Endo.
Yes you are of course right. Thank you
What were the actual results of your Synacthen Test , did you get a copy?
The trouble may well be partly caused by your Adrenal Function , unfortunately in this case an increase in Pred may not help now to help them establish if this was in part responsible.
You may be having issues with your lumbar region or other problems to do with Bone Health or as Heron says some type of Nutrient Deficiency could be making your underlying problem worse.
As others have said jumping on a diagnosis of a PMR Flare was far too quick , and your reactions to Pred and Fatigue and lack of change in your Pain levels seem to prove that .
Unfortunately , the timing couldn't be worse , but getting to see another GP and having more extensive tests and x-rays for things other than just PMR are required .
I hope you get some better medical support and relief very soon.
This is the letter I received after my test at Christmas as follows:I received from the endocrinologist on 24th December. As follows: I am pleased to inform you that the results are entirely satisfactory. You definitely need the hydrocortisone medication but you are absorbing the hydrocortisone well and in fact your blood levels of hormone cortisol are actually slightly higher than we need. However giving that you are taking the dose of 10mg on rising and 5mg at lunchtime and 5mg in the afternoon which is a standard replacement dose regime. I don’t think you need to reduce the dose and would suggest you continue to stay on the dose for now. Please be reassured that you are absorbing the hydrocortisone well and your body is getting sufficient amounts of hormone cortisol.
Yes I agree I need test but there’s been no suggestion from my GP if it’s not an Endo problem or a PMR problem then I’m stuffed
You aren't stuffed , you probably need to contact the Endo again to explain what has been happening , maybe the Cortisol levels on the original test could mean you needed a change in doses. Thing is they may have been satisfied with their treatment choice at the time but they were still in part trying to solve an Endo issue , they did not say your Adrenals were functioning at that point .
You do need to speak to him and another Doctor who is willing to really examine what your symptoms have been and how they haven't improved with the treatment you have been receiving.
With some more examination and investigation to get a more accurate diagnosis you could find the treatment could be relatively straightforward.
Getting your hydration up may help a lot , if they haven't done electrolyte and thyroid tests recently this may show some other causes for the symptoms.
If you haven't had x-rays or monitoring of your BP and various tests since being in hospital there are still many options for them to do to help you.
I'm just very sorry that people aren't doing enough to help you at the moment without you needing to push for what you need.
Take care and keep us updated xx
No they didn’t say about the adrenal function
. It only happened a month after my test so don’t know if it’s connected. I don’t actually see the Endo until May. But I think it’s worth a call.
I think I will be more insistent to the doctors. I have bloods tomorrow so will get the results by Friday. If when I ring the nurse for results I will insist to speak to the doctor.
When all this happened and I saw the doctor my pulse rate was 142 so he sent me straight to the nurse for an ECG. All ok except for high pulse but I was prescribed a beta blocker. I’ve had a chest X-ray as I’ve had a cough for a time. That’s clear.
Thank you for your support I will let you know what happens.
See if they can offer a new/check the side effects of beta blocker if the symptoms started at a similar time.
No the high pulse rate came the same time as the shakes and the legs so I was given the beta blockers after. I will look up the side effects. Thank you
If it is the pulse etc that problematic the beta blocker does not seem to be working so you do need a full chat with the doctor.
I know if at least one member who did t get in with HC and was placed back on low dose pred. I think around 5mg but I may be misremembering. Perhaps it worth discussing a trial if pred to see what happens??
I’m on pred 6mg now.
Sorry..it because I just read that letter?!? Please ignore then. 🌻
Does the adrenal gland control the way your body deals with fright ( for the use of a better word)? I am incredibly jump now if there’s a loud bang or someone comes up from behind it makes me jump out of my skin.
Wishing you a return to strength.
Not what you're looking for?
You may also like...
Back to square one. Big flare up.
how quickly did you feel relief by taking prednisolone?
Wobbly legs and hands - is it the pred?
Wobbly legs
PMR Tapering
Increased pred to 25mg
Wobbly legs
Heavy legs
Introducing Myself
wobbly and weak legs? Moderation team
