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Foggy's "Invisible Illness" Support
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Possible nerve pain

Hi everyone, I am feeling very low at the moment, I have had pain burning and tingling in my legs and feet, I have gone from walking between 8-9 miles a day to struggling to do three. I thought at first that my legs were the problem but a consultant I saw said it could be from a bulging disc I have , he said it doesn't have to touch a nerve but can leak chemicals which irritate the nerves. He gave me a spinal injection which vastly improved my symptoms for a few months but then came back. He was going to give me another injection but the hospital was stopped doing anymore procedures, I was then transferred to someone else and the outcome of that is he says there is no evidence that the disc is causing the neuropathy and initially said I would be transferred to the pain clinic but now says he is not doing that but sending me back to my GP. I have battled for 5 years to get treatment, even paying for scans myself and am frightened that nothing will be done, my quality of life is seriously affected, I am either sitting or lying down 20-22 hours a day ,( something we are constantly told is very bad for us )because being on my legs increases my pain . I also have severe Osteoperosis, another reason I need to keep active. Can anyone suggest anything to help me ?

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Doctors make me sick they just want you on the meds continually seek alternative medicine like accupuncture and massage take care

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Was not even been offered pain meds, a physiotherapist I consulted told me to ask for Amitryptyine . I did this and was put on 10mg which had no effect, asked to have dosage increased, now on 30mg at night but still have pain. If I sit all day the pain is not too bad ( except that irritates my back) and if it was like that when I went for a walk or just stood for any length of time I could cope. I cannot understand why I haven't received more help with the pain, my GP has known me for years, she knows I have always been pro-active in looking after my health and that I am no couch potato but that doesn't seem to count.

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I don’t take pain meds and moving is very important I know I am better when I do and I manage my pain with magnesium spray and epsom salt baths and most importantly meditating and massages Take care

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Hi Ann thanks for recommendations you gave me a while back. It is good to share info. Granni B

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How is your osteoporosis being treated ?

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I was diagnosed after a fall which ended with me landing heavily on my bottom. At first in A&E I was told no real damage done but had a letter 6 weeks later saying that they had had another look at my X Ray and I had a fracture in my spine. Four months later after a dexa scan I was told I had severe osteoporosis in my spine and I actually had two fractures not one, my spine was -4.8 ! I was advised to take Alendronate , which after an inner struggle I did. In fourteen months I have gained bone and am now -4.4 . I walk about 3 miles a day, lift light weights, do some floor exercises aimed at my spine, some balance exercise between 2-3 times a week and have just started doing about 15-20 mins of tai chi when I can. The rest of the time because of the pain in my legs I am sitting and I hate it.

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I have just read your profile, you have had quite a health journey, pleased that you have improved. I see you practice yoga, I think I will really enjoy the tai chi (courtesy of YouTube) I certainly do so far I love the music played with it and find it relaxing to do and if I can sort out the pain I get when on my legs too long I will increase the amount of walking I do. ( my favourite pastime ) I had been looking forward to my retiring so I could walk more. Forgot to say in my other post I spend a small fortune on supplements that are supposed to help increase bone density.

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We are two hours ahead here so will reply in the morning when I am more alert 😊 So glad you are supplementing - speak soon !

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drmyhill.co.uk/wiki/Osteopo...

Dr Sarah Myhill has some good information about Osteoporosis and the lifestyle required to help in the above link. Apologies if you already follow her regime. Which supplements are you taking and how much ?

Your ability to walk so far each day is amazing - I wish I could :-) Am sure you will continue to enjoy your Tai Chi. I started teaching yoga at 65 - and now in my 8th year. We all have hurty bits but everyone has their special strengths.

I read recently that B12 is involved in bone formation - sorry do not have the link. Do you know your levels ? I self inject at least weekly to help with the pain and it works ! B12 is often used in some countries for pain relief - it is involved in the maintenance of the myelin sheath that surrounds all nerves.

How is your thyroid ? Low thyroid can affect uptake of nutrients which in turn can be involved in bone synthesis - especially B12 and VitD.

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Three miles is nothing to me as I said until I had the neuropathy in my legs and feet I was walking 8-9 miles a day, I may never be able to achieve that again but would be happy to do 5-6 miles a day. I have read some posts on neuropathy and they say that exercise improves their symptoms but it is the opposite in my case. I have paid privately for some of my treatment, that is 3 physiotherapists and one consultant and scans on my legs, I am not wealthy just desperate to get my life back. I have also read about the involvement of vitamin B12 in bone formation, I may have to pay to have my levels tested, it is nearly impossible to get the NHS to pay for anything. One of the tests done at the bone centre was vitamin D3 and I was told it was normal but not what the level was, if I cannot find out I may have to get it tested again, a lot of people say that we underestimate the levels needed in the UK and as I always wear moisturiser with SPF in it, I don't know how my level can be okay. Will tell you again about my supplement regime.

Just to end on a positive note apart from the pain I am very healthy and feel very well, although I was shocked at the osteoporosis diagnosis I have got used to it and as long as I don't break anymore bones I should be all right, in fact on a day to day basis it is the neuropathy that causes me more problems.

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Am wondering if you found Dr Myhill's link interesting ? The drug you are taking may improve bone but makes it more brittle she says ...

VitD is good around 100 & if you are taking a good level of supplement then the co-factors magnesium and VitK2-MK7 are helpful. K2 directs calcium away from arteries and into bones and teeth 😊 Your GP should test VitD in view of your osteoporosis. If not City Assays in Birmingham have a postal service for 28 GBP's. Website by the same name.

B12 should also be tested by your GP as a level below 500 can reveal changes in the spinal fluid and be the cause of cognitive decline. Check out Sally Pacholok - Could it be B12 ? There's a movie on You Tube and a book.

There are several companies that send out Testing kits - used by thousands on Thyroid UK . Click onto the link below and then ckick About Testing in the Menu.

thyroiduk.org

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Hi Marz, I take Vit K2 MK7 and MK4, Boron, Magnesium, Vit C, Cod Liver Oil, Vit D3 and a multi Vitamin. I did read the Dr Mayhill's link, I have read very similar information before, hence the inner turmoil about wether to take it or not but with a loss of nearly 50% of bone ( assuming I reached that level) we felt short term I did not have any choice. It is very difficult knowing what to do for the best, I don't like taking them and had my bone loss not been so great I would not have done so. I just do as much as I can with diet, exercise and supplements and hope I don't fall.

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Sounds as if you are doing really well - with your supplenents. Am wondering if taking a good B12 supplement on its own and then a good B Complex. Rarely enough in a multi-vit. I take Jarrow B12 & Thorne Resesrch B Complex - both from Amazon. Your GP should test B12 & Folate ...

Do take care not to fall ...

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I did try a course of vit B complex but when there was no improvement I stopped taking them. I meant to ask the bone specialist if I could have a vit B12 deficiency test but forgot. I have read that it can affect bone density and both B vitamins and vit B12 deficiencies can cause neuropathy, I don't think that my Doctor will agree to a blood test so that will probably be something else I will have to pay for .

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I have been on Thyroid UK forum for over 7 years and read B12 results daily. Your GP should not refuse. Test Folate/B9 too as they work together in the body. Testing B12 now will skew your result as there will have been some B12 in the Complex. As mentioned abive taking B12 & a Complex will give a better result. It takes months to get to a base figure or if you do test remember to take supplementing into consideration ... 😊

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Hi Marz, it is over 2 years ago that I took the vit B complex, so that will be gone now. The specialist who changed his mind about sending me to the pain clinic, said he would ask my Doctor to send me for a test - cannot remember what the test was - I will then be making an appointment to see my Doctor to discuss the result , so will then ask about vit B12 test. I get so fed up with the constant battle to get anything done. With regard to the osteoporosis, my Doctor didn't seem to know much about it, when I asked questions she just looked vacant in fact my partner said ' you know more about it than her' . What is the health care like in Crete ? I am going on holiday for two weeks on Friday so I am looking forward to that and it is definitely not a skiing holiday 😀

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Hope you have a great time on holiday. Yes GP's ate rarely up to date with their knowledge. Their thyroid knowledge is pitiful - same for B12. Follow the money 😊

The internet has been a godsend - enabling us to share knowledge and experiences ...

If you are off abroad check to see if they sell B12 & syringes over the counter. In the early days he Pharnacists also did my injections in the back of the shop. !! It's a great pain reliever ...

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Have you tried compression socks and gloves for neuropathy? Expect you take D vitamins especially D3 which aids the absorption of calcium. Expect you have had bone density tests. Women are different to men so think you should have a well woman check. I had a slipped disc, and could only stand or lie down. It was helped by anti-inflammatory drugs NSAIDs non steroidal. The natural path includes curcumin spice, for helping inflammation but it depends if you like these spices.

I know what hell you are going through as my hubby had a bad spell with a special type of arthritis. It was not until over a year he had a referral to a rheumatologist who was able to diagnose his problem. In your area is there a good orthopaedic centre - it makes all the difference to management of your condition. Take care.

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Too much lactic acid after exercise? Massaging your calves and thighs should help as well as magnesium. Muscle aches and pains can be helped by tonic water which contains quinine and banana high potassium food, as well as tomato juice. It sounds as if you need something done about that disc as the help you have received has not helped the pain at times. We have good referral routes where I live but some hospitals have much better results than others.

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I have similar sensations in legs and have found eating low carbs to reduce sugar levels. I also do HIIT training to improve leg strength. I am now nearly pain free after years of no known cause of the neuropathy. Good luck

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Hi, I already eat low carbs, as regards HIIT training, the specialist at the bone clinic looked alarmed when my partner said I did some weight training. As I am a long term walker my legs are strong with well defined muscles. Thank you for taking the time to try to help me. I originally thought the problem was my legs and when the orthopaedic surgeon suggested it could be one of the bulging discs in my back leaking chemicals I thought 'no way' but the spinal injection made a big difference to the pain .

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Our bodies are such a mystery. . . Granni B

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