Heavy lead legs, anyone else? - Fibromyalgia Acti...

Fibromyalgia Action UK
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Heavy lead legs, anyone else?

Hi everyone

I'm newly diagnosed fibromyalgia (long-standing diagnosed autoimmune thyroid, ctd Sjogrens)

I am currently paying for private psychologist because I struggle with the symptoms and the fact I don't appear to get heard by local service medics.

At New Year, I finally got diagnosed with a staph infection I had visited GP 3 times, A/E once and practice nurse twice. I had bought a self test kit confirming the infection; yet, I was still passed from pillar to post. I even had one A/E nurse tell me Serena Williams has the right attitude with managing sjogrens (this unwarranted comment, was in reply to my answering the nurse assessment question, "any medical history" ...).

One of the worst symptoms I had during that time, and periodically since, was/is very heavy, like lead filled, lower legs.

Does anyone else suffer this horrible symptom? If so, what diagnosis, if any, were you given. More importantly, what helps alleviate the symptom?

I have found psychology to be a real help in discussing how I feel but I can't change other people; the medics I expect more from.

At times, I feel such despair. I know NHS is struggling however, I don't seem to be given any follow ups whereby I believe referrals would benefit. Thus, I go around and round the revolving door of GP where the main focus appears to be of gate-keeping.

Try as I might, I tell myself don't go to the GP they either don't want to help, don't understand the implications of autoimmune disease or they seriously believe I am no more than a hypochondriac. If I could buy antibiotics I would.

In actual truth and all honesty, I don't want to be ill. Nor have symptoms. Furthermore, I don't want to spend my retirement sitting in GP surgery, waiting rooms, spending my hard-earned pension on private care (psychologist, endocrinologist, ENT consultant, vitamins, minerals, yoga, research...).

I want to go on holiday, mix with friends and family without being in pain, discomfort, fatigued.....

If you have heavy lead legs and or have felt like me, I would love to hear your views. Sometimes, I just do not know where to turn.

My GP tells me all the staff at the practice say how well I look, how well I manage (all well and good), though, how do I tell him I'm not there for compliments, I just want to know what is wrong and how I can sort the symptom.

Thank you for reading. I'm sorry I can't be full of joy right now.

Wishing everyone wellness. Xx

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You got a bad nurse there hun,there are some..she got the Williams sister wrong its Venus with sjorgrens and she lives in USA with a large bank balance to afford first class help? I hope your Neuro doc helps u loads ask about hydrotherapy for those tired limbs. It will help you with possible restless legs too..keep us going with your progress.

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Thank you for reply and very good tip.

I agree entirely with your comment about nurse.

I would like to see a Neuro Dr and a gastroenterologist because of so many awful symptoms but GP dismisses any discussion I attempt regarding symptoms.

To be fair, my GP is so disinterested in me or my symptoms that I haven't discussed the fibromyalgia diagnosis. I try to keep away from GP.

He must be aware though, as he referred me to private ENT after I told him I didn't want to keep taking antibiotics and that i would pay private to get ears nose and throat checked.

I got a copy of letter from ENT telling me diagnosis and he sent copy letter to my GP asking him to refer me to pain clinic - GP has never spoken to me about this - though he did increase my 60 codeine 8/500 to 100 tablets monthly which I found out at pharmacy collection!

So, this experience and numerous other experiences of NHS staff (whom I cannot change), brought me so low, I booked myself into psychologist as private patient to understand why I can't seem to get heard /helped. Despite attending these appointments and trying to be assertive when I'm ill, or before I get very unwell, I still get dismissed.

Thank you so much.

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Hi

I don't think that nurse was very good (putting it mildly) I wonder how she'd cope if the ball was in their court?!? Not that I would wish it on her. Please take care Lynne

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Thank you. My intuition tells me she is not best suited as a nurse. However, I can't change these people. I just don't have the energy

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I get the heavy lead legs when I am anaemic - have you had your iron levels checked recently?

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Maya, thank you.

I am actually thinking that myself because I'm out of breath when I walk or exert myself.

I have bought B complex which helps me somehow and I've told my husband my next trial is getting B12 into my system

I had anaemia when my 34 yr old was 4 yr, it reminds me of that time. I think my legs struggled then too.

I would have loved to speak to the GP about it.

He just kept saying, "you look great, you are doing so well, we all say so here" (again, I think that is so unprofessional! How dare they (staff at GP practice), decide and discuss!!!

As I left his room, he immediately started typing much information for his records - I left the building promising myself I need to change GP practice again or do as I try, help myself with lovely people like members here, knowing medical care is no longer interested in chronic illness

I'm getting B12 supplement tomorrow. No good asking GP to do test. I do trial. Thank you.

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Can you tolerate oral iron tablets? If so I would take them too. See if they help. I can’t take iron tablets so I get iron infusions in hospital because my anemia gets bad over time.

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Thank you Maya23

I have bought some so time will tell. I do take B complex orally and ok with that so should be ok.

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I get the heavy legs from time to time. Although Not had them for about 9 months. But for me when it happens, it seems like a real effort to walk even at a slow pace and a desperate need to sit down with feet up. What I have always found helpful is private Traditional Chinese style Acupuncture. Which also helps my other discomforts, chronic tiredness & pains.

It took me many years to accept my aches and pains were here to stay. And from then onwards, it was time to adapt mind wise & well, just plan ahead to suit needs. In the past, I went away with friends a couple of times and told them I needed to rest up for part of the day, another time mentioned needed help with carrying something. I found it difficult to ask so I know It’s not easy But true friends will help you as long as they know. Think that was hardest for me asking for help. As I’m not one to do that. And when I look back on it now, these particular friends were not true friends at all, but new friends since then are true friends. They offer help.

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Thank you Rosepetal60

I tried acupuncture and my body reacted with huge lump! I had chemical testing through a lovely dermatologist, I was found to have metal cobalt and nickel allergies. Who would believe it, those needles are SO tiny!

O yes, I've let get one GP, nearly 2, and a few 'friends' that eye roll! It's great replying to you. I have just realised, I based letting go on the premise I don't need anyone in my life who doesn't consider my well-being - this realisation tells me its time, for sure, to change GP! It is precisely the fact that I've gone to appointment, asked for help and not got any help whatsoever. Thank you.

Day to day, I do my best always. It's the days I suffer symptoms I can't manage, I see GP and I'm dismissed.

I once had 2 issues. Asked receptionist can I book double appointment. I was told no, Dr won't let you go till he addressed all issues. Ist issue, what did my blood results indicate? 2nd issue, I believe I have an on going infection.... GP looked at his watch saying your 10 minutes is up!!!

Of course, being in pain, we are not always bubbly happy confident or competent, this is why I paid psychologist, thinking perhaps I'm not communicating effectively. On that score, I'm grateful because I have an hour to get the GP experience off my chest instead of harbouring it.

I'm learning that the New NHS is Acute Practice system. Unfortunately, I like to be proactive and preventative in my approach. Thus, if I ask for help, I feel I need it those times I don't manage. I ask the 'expert' who has studied medicine along with side effects. My mistake, I guess I will keep on reading...

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Hi.

Glad you've got some proper friends now everyone on here's great too. Love and hugs Lynne xxxx

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Yes mine started when I was very ill with Graves’ disease. Some days are better than others but the heavy legs is frustrating. I find going to a warm swimming pool helps me to move around and I’ve made new friends who are very supportive. Take care x

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Thank you Tory. Interesting! I've been on New trial dose of levothyroxine. Normally get 125mcg day, increased to give me a boost. I've had heart palpitations and hair loss... should have seen my endocrine next Monday, last Wednesday I got a letter saying appointment now cancelled till June 2020. Again, I'm left floundering!

Also, I have problems with my eyes. I saw an eye consultant through Specsavers (brilliant service!), I was given eye drops and diagnosis. To be seen 6 months hence. To date its been 9 months waiting. I got a letter from that hospital too. Appointment cancelled. I phoned asking why. Got a new appointment for October.

Seriously, it beggars belief, I know!

I speak honestly. This is my experience. That's why I don't follow privacy tips. I have nothing to hide.

I'm sure I'm not the only one - care is a postcode lottery, I'm told. I must live in the wrong area!

Your tip is good. I went into my daughter's hot tub first time, tricky getting in and out but yes, I felt better afterwards.

Take care.

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Yes, the lead legs have been awful this summer. I think it’s to do with the humidity as I used to feel like this when I lived in the Med with 100% humidity day after day.

Serena Williams ( or her sister) may well have a particular attitude for dealing with Sjorens ( or anything else)—— she’s also got a lot more money and a lot more doctors, therapists etc.. who will jump to treat her !!!!! It’s easy to have a “different attitude” when you have several million dollars you can spend. Stupid nurse.

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Thank you 06hollyberry

This too, has been one of my thoughts. I do get a rash on my lower leg and foot when very hot. Always keep light trousers on stay in shade, Sun doesn't seem good for me anymore. Yet, for sjogrens its supposed to be better humidity 100percent. These are my dilemmas. What is the root cause? If I know I can try overcome it.

That nurse is surely in the wrong job?

I agree, if only I had private chef, laundry aid, medics who listen, money to pay everyone for help.... if only... the day I was cool compared, I should have been at my walking group... sitting in A/E is no picnic... Thank God I have great support at walking group. They know if I don't attend, I'm too unwell.

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I have heavy legs, poor balance problems and muscle spasms which suddenly appeared a few years ago, though I’ve had fibro for 35+ years. I was referred to a neurologist who diagnosed it as fibro. He said it was a functional condition, which he said was a software issue with the brain and not a physical disorder.

I use crutches and use a wheelchair when I go out as my walking is limited to around the house and little garden and do as much as I can to keep going. I keep hoping that I’ll wake up one morning and it will be gone! 😂

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Thank you Roseyinthegarden

I'm very sorry to hear about your increasing mobility issues. I too hope you wake up one day and symptoms will be gone.

It's interesting about brain involvement.

Would that mean all can be resolved? What treatment is there to help? What causes this brain involvement?

My understanding was th st fibromyalgia is related to central nervous system? So, guess that's what is meant its not physical - yet, feels physical?

Parkinson's is like that, I believe. My brother has Parkinson's so I will read around the brain involvement.

Perhaps then, psychology appointments will help after all?

I don't mind what helps - if anyone can tell me the cause I can and will pursue a solution.

You take care, keep enjoying that garden. Illness like these, remind us to be grateful of such pleasures as the garden, don't they? Xx

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Thank you for your lovely reply Supul, I much appreciated it. 🙂 Yes, fibro is considered to be sensitisation of the central nervous system Functional neurological symptoms are a real physical problem with the way the neurological system communicates with the body and include a wide range of conditions such as migraines, chronic headaches and IBS.

Having said that, there is up to date ongoing research into fibro, which is well worth looking at - if you google “More is Not Better: Increased Small Nerve Fiber Problems in Fibromyalgia Spell Trouble” and look for Health Rising and/or Cort Johnson, you should find it. I’m sorry I can’t post a link as it carries advertising. I think we will have a much clearer idea of what’s happening in fibro in the next 10 or 15 years.

Psychology wise, if you can keep positive apparently the pain is less, but it isn’t always easy and not everyone can do. Fake smiles release endorphins, which are natural pain killers, it can feel silly, but it helps and other people benefit from your fake smiles too (according to some research). Singing can also reduce pain levels and might help your brother - again goggle will find it.

Mindfulness has been the biggest help, especially at difficult times. I can recommend the free Smiling Mind app. 😊 Along with expressing gratitude, keeping a reflective journal, guided relaxation/meditation, spending time in outside, creative hobbies, puzzles/brain games, reading and gentle exercises such as tai chi. Even doing mundane things in a different way help stimulate the brain to build new neural pathways. It all helps. xx

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Awe, thank you Roseyinthegarden

I will definitely follow up on reading as your suggestions. I'm sure this will be really helpful.

I think you may well be onto something because small fibre neuropathy is indeed a known symptom of Sjogrens!

I do attend a mindful group and in so doing, I feel calming influence practicing everyday.

I worked very hard until I was 64 yrs of age. I retired 6 months after my beloved niece suddenly died due to unknown heart condition. Sometimes, I believe the shock triggered a response by my body that caused autoimmune disease to spiral out of control.

I collapsed 4 months after retirement. Interestingly, I was blue lighted to hospital with suspected stroke. The worst headache of my life and severe digestive/gastric issues never had before! I was told I had sjogrens, autoimmune thyroiditis, and on going sciatica with 3 prolapse discs. Fibromyalgia was diagnosed beginning of this year.

Since then, I have been taking a very slow approach dealing with mind/body connection. I was always positive, bright and bubbly. Problem solver and helper to many. Always putting a genuine smile out and nothing too much trouble... getting so unwell gave me a personal awakening. I didn't allow myself to grieve niece passing, father and mother passing.. too busy supporting others.

I began to believe if I have autoimmune illness - self causing attacks on body - I need to search heart, soul and mind. Perhaps unwittingly, I was partly creating the self to attack?

Ironically, disinterested or unhelpful medics help me to source help I need by myself.

So, booking a psychologist, my first words were, "I want to find my authenticity... I need to get well". With her help (listening to myself), I continue to work on myself in a positive manner, though I no longer show that I'm always happy, I embrace good, and not so good days appropriately - I allow me to be me. Each day I write about the good and not so good..

However, I do all of the other tips you suggest and yes, they really do help. I spend some of the day quietly reflecting. I'm grateful for how far I've come from when first ill. In so doing, I remember to listen to mind body spirit, asking for help when symptoms are too much. I do give an opinion when I feel people are not hearing me or seeing me nowadays. In the past, I put myself last, always.

I no longer take hydroxychloriquine. I buy vitamins and minerals. So, I know I'm on a better path. Finding people like yourself here, helps enormously because we know, fibromyalgia is horrible. Together, we will tame the beast of autoimmune disease.

Thank you for caring and for sharing.

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All this shows to me is that private or n.h.s ..which although on this occasion let's us down is free and we should appreciate we have it..

No one has the knowledge to fully understand fibromyalgia and I think unless you experience it then you will never truly believe that someone can look well but have a million different days of widespread pain . Fatigue. Memory loss etc ..

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Thank you antinormal

Sadly, my own NHS experience with autoimmune disease has so often, resulted in me having to pay for care. (Though, of course, we cannot fault a free NHS in the acute setting or indeed, well known or obvious presenting illness).

U

nfortunately, I have found that most private practice consultants through courtesy, prefer a GP referral despite me paying the bill. This means I visit GP first.

My dream would be to visit the free NHS GP and get the health issue sorted, or acknowledgment that the health issue is beyond his remit, or ideally, get an actual referral I need. Though, I would settle for respect, a little empathy, if not understanding.

Sorry, my post was never intended to offend, nor indeed bash the NHS service. Rather, it was to ask for help and patient experience advice on heavy legs because having attended my last GP appointment, my query was totally dismissed. I look fine, therefore, GP did not wish to discuss my concern. This approach left me floundering as not knowing of anyone else suffering heavy legs, I had no idea cause or where to go for help.

I've had so many great responses from members, I no longer feel alone, struggling, isolated in this symptom. I've been given some sound advice, ideas and friendship. To me, Health Unlocked are providing a human response service, that is sadly, often lacking in medical care service driven by market forces and some overstretched staff.

Of course, this is just my opinion based on my own experience at a time of need. Indeed, the very foundation of the NHS was built on patients needs; for that principle, I am very grateful and appreciate the good work that is done.

Take care

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Yes, Leadlegs is a symptom for me too, I find it worse in hot weather. Resting with legs elevated is the best thing I find, but it is worth having strong words with the GP.

Often GPs will dismiss all our problems as 'only Fibro', even when we know it isn't, getting a GP to take notice is like drawing blood from a rock.

Unfortunately, GPs are under great pressure right now, with the Government clampdown on the prescribing of Opioids, also many GPs taking early retirement to get away from Governmental demands, and becoming a GP just isn't 'fashionable' any more.

The uncertainty in the NHS about what will happen after Brexit with regard to EU GPs is adding fuel to the fire, many British GPs are heading for places like Australia, New Zealand and South Africa, where the pay, weather and work/ life balance are better.

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Thank you Midori

I do elevate legs instinctively I have to and I feel better circulation in so doing helps it's the walking far that's problematic.

I know, yes, GP and all NHS staff feeling the strain.

Unfortunately, applying a business model to underpin the performance of NHS, just doesn't work.

We are not tins of beans. We are human beings. The service should not be about stacking them in, get them off the shelf - next line of beans....

I had a career in the NHS so I guess I'm biased, I do have expectations. I was trained (and have personal qualities of compassion and empathy), to know that all patients are treated with respect. I also believe, professionals should tell us if they don't have answers. We are not about blaming them. We know these conditions are complex. But, please, please treat us in an equitable manner.

My experience is more about feeling dismissed instead of being referred to a colleague who does have better informed knowledge than (my), GP appears to have.

It's the gate-keeping system and postcode lottery to care I struggle with.

If a GP can't help I feel I need a referral. I do pay. I do get diagnosed and a letter sent to GP for referral - all to no avail.

Take care

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I couldn't agree more; I was a nurse for many years, and I too know the business model doesn't work for a service industry like the NHS, fire brigade, Police and Ambulance services. If I were still nursing, I'd be off to New Zealand like a shot!. I nearly went there in the 1970s, wish I had now!

Definitely agree that they should tell us if they don't know, I object strongly to the patronising attitudes of many GPs nowadays, Mine doesn't even bother to tell me the diagnosis; I have stopped going to him, I see another doctor who treats me as a knowledgeable human instead!

Cheers, Midori

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Thank you Midori

I was also a registered nurse. Sometimes, I think that can be an issue. I do have high standards in practice. I loved my role. I too suffered overworked with staff shortages. However, every patient I saw was human, individual, in need, and I had the compassion, empathy, desire, and professional skills to never judge - always serve.

What I don't understand is why some medics don't fish the idea of patients being a partner in their care and decision making. Anyway, I digress....

Voting with feet and going elsewhere is what I have to do. I've had more help and support with this group than I could have hoped for.

Together, we will better manage fibromyalgia.

Thank you for sharing and for caring. I bet you were a great nurse too!

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Ah, thank you. I always did my best, and TBH, I would have done it for nothing! It was the best job I ever had!

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I once said that to my manager - the experience was a privilege as far as helping patients goes.

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Whoops! Predictive text error ... 'fish - was supposed to read relish!!!'

To this day, I still own my mistakes... lol

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Unfortunately this seems to be a common attitude in the NHS and a lot of us have encountered the same problem.

As far as heavy legs, check Vitamins D, B12, folate and ferritin.

Karen

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Thank you Karen.

I know. It's sad. Makes life so much more difficult. When we are faced with any crises in life, a friendly face and approach underpins great relationships to assist moving forward.

We also know there are some fantastic NHS workers. Just not enough of them, hey?

I truly appreciate your tips.

I'm taking 1600iu vit d - level 89 (60-100) after 2 yrs level 49 - 62, dose was increased few months ago. I will get checked before year out.

I am waiting for blood results to come back regarding B12 (bought supplement at the ready though!), and will check others if not done I will do privately.

I have magnesium baths and considering getting mouth spray as understand magnesium low affects legs?

Thank you for caring and for sharing.

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Maybe check thyroid too as others have mentioned they had similar problems linked to the thyroid. I think you may have mentioned you have a relation with Parkinson's - have you been checked for this?

Karen

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Thank you, yes I do have hashimotos.

Since I collapsed I was diagnosed autoimmune thyroiditis, Sjogrens, then early this year fibromyalgia..

So, I do read a lot around thyroid and act accordingly. Endorse doesn't think legs anything to do with it.. I think huge problem with numerous labels is not knowing which is causing what symptom.

I wouldn't dare ask current Dr about Parkinson's... he would definitely think I'm a hypochondriac, and wouldn't even dis uses issue with me. Though, seriously, I do get your point.

I recognised my brother's symptoms long before he listened and visited his GP, so yes, if I thought could have Parkinson's I would get checked by some other Dr.

Again, thank you.

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Sorry, I'm getting tired. Predictive text errors .. 'endorse means endo and dis uses means discuss' you probably guessed but just in case...

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Yes, I knew what you meant. Maybe check your latest blood test results, as well as vitamin D. I have Hashimoto's and M.E; my husband has M.E but no thyroid problems and yet his legs are terribly painful and heavy, hence my interest in your question. (We met due to us both having M.E.)

Karen

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Thank you. I had thyroid bloods done on Friday as was due to see endo on Monday - however this appointment has suddenly been cancelled (cancellations are becoming the norm), I have been given another appointment for June 2020.

I will get blood results and they will give me some idea if their is thyroid involvement - this afternoon I've been exhausted!

How lovely you met your husband both having ME - a real silver lining! I'm sure despite your suffering its good to know you both having experience and understanding of ME

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It is. We have been together for 22 years.

Try to get your blood test results anyway. Health Unlocked (Thyroid) is a good website for advice and information. Don't wait until June next year.

Karen

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And good luck!

Karen x

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Thank you.

No I won't wait till June next year.

I've got some of my mo-jo back today. I'm sure you know how it is with ME

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I do and I'm glad that you have.

Karen

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Hi there Supul

I sympathise as I have the same problem with my legs feeling so heavy and aching calves... I was diagnosed with under active thyroid and fibromyalgia... taken over a year to be diagnosed and still no help from GP’s ... going to see another GP next week so will update on here what she says ... I do know that light exercise does help.

Night times are worse for me

Sending a healing hug

Take care hun 😊

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Thank you Ladybex

These symptoms are all new to me. The first time it happened, I was really afraid. We were at an exhibition and had walked for a couple of hours before I felt I couldn't walk another step. My legs were so heavy. Never had such an experience. We stopped walking, sat and had a coffee break. Felt refreshed and set off again. Within ten minutes, it felt as though my calves had filled with cement. My feet and legs felt huge, my toes burned and felt strangely numb. We returned to our car and I lay on the back seat with legs elevated. After a few hours lay on setter the feeling wore off. Though I was exhausted.

Nowadays, I get the same symptom random intervals.

If I knew cause I could address it.

Weather, long walks, autoimmune flare up, infections, virus, underlying stress appear to be involved.

I'm sorry you suffer the symptom too. I wish you well in your pursuit and yes, it will be lovely to hear how you get on with Dr.

I do force myself to go to gentle yoga weekly and I do what my body allows.

The thought of my walking being severely compromised every day drives me to try and find a solution.

Interestingly, when I had the undiagnosed staph infection (which Drs ignored until I bought a self test kit and insisted they took a swab), caused the distressing leg symptom to go into overdrive. Those nights were awful! I used to walk around, take pain relief, apply cold flannel to calves...

Again, thyroid involvement may have been a part of the picture because I was extremely hypothyroidism and meds were increased twice after dermatologist got involved.

Good luck. Thank you for sharing and for caring.

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Your welcome take care and sending healing wishes 😊

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Thank you.

Take care. X

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Hi

I too suffered with "lead legs". I thought I was the only one that experienced this symptom. I had it for about 5 years. I worked in a school and had a lot of stress (both personal and work). I was in bad shape. Neck tension, headaches, sore aching feet, depression, anxiety, food & scent allergies, insomnia and very bad digestion. My legs ached every night and during the day they were so heavy it was hard to lift them to go up stairs or even walk . I was a nervous wreck. I was finally diagnosed with FMS but not much else was done other than an antidepressant and amytriptyline. It helped the aching legs but not the lead leg. Finally, after a nervous breakdown, divorce & psychological sessions and a permanent work leave (on disability now) my life became way less stressful. I forced myself to go to exercise classes and yoga. Now rarely, I get lead leg. I think stress is the problem for most of my problems. My health did not get better until I made these changes. I hope you find an answer for your problems and find peace

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