This is my first post for help although I have commented on a few recent posts. I was wondering if some of you lovely people that I read posts from everyday can help? I have had back, knee, foot and other health problems for about 16 years now but it is only since I had a second decompression surgery in Sept 2015 that I have not been able to manage my pain levels. I have been off work ever since my surgery and because of lack of mobility and such horrendous pain from my back every day, all day, I have now taken early retirement because of ill health at only 54. I have been given a number of different medications over the past year but they all have had awful side effects and don't relieve the pain anyway so have had to come off all of them.
I am trying to treat my pain naturally and feel so much more like me (most of the time 😃) but I am so so tired/exhausted/lacking energy and now looking at different vitamin and minerals that if deficient can cause this or elevate pain levels or irritate nerves in my lumbar and theracic area.
I get dreadful electric shocks in my lower back, have a real 'heavy' feeling in my pelvis/sacroilliac/hip area all the time which also locks or ceases up so quickly and can't stand, sit up or lay down for many minutes because of this. My legs jump about in the evenings while sitting with my feet up, my feet vibrate all the time and my back is so sensitive the muscles spasm at any little movement or touch.
I asked my GP if I could have B12 and magnesium blood tests and have just got my results, he says they are fine. I really don't know much about what they mean other than I can see they are all within the required levels of 'normal'? If anyone can offer some help I would really appreciate it. Hope you are not in too much pain today and all looking forward to the weekend, I have a good friend coming over for the day tomorrow 😃😃 Thank you guys x
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Taliswood
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Sorry but I personally can't help as that means nothing to me.
You could try posting that on the Thyroid UK forum here on HU. I have heard people say there are some on there good at interpreting blood results. Though I've never tried it myself and I've no idea if they would know anything about those particular aspects of blood results. Could be worth a try though.
Thank you for the welcome Margaret, the hugs and advice. I am not part of that group as don't have a Thyroid problem (at least if I do I don't know it yet haha) so not sure if I should post on there really. Will be patient and see if anyone else can help 😃😃 Sending gentle hugs back to you x
Morning Margaret, I thought about what you said and joined the Thyroid group and have posted. I have already had a couple of replies. Thank you very much for the suggestion 😃😃😃
The blood tests do seem to show that everything is within normal levels, so no clues there.
You say you have had back, knee and foot problems for many years. If these started before about age 30 and weren't the result of obvious injury or accident, then I would strongly suggest asking for a referral to a rheumatologist just to make sure it wasn't some kind of inflammatory musculoskeletal problem. Spondyloarthritis in particular hits all those areas and can be quite hard to diagnose as it is seronegative (there isn't a blood test to pick it up), but needs a good consultation with a rheumatologist to rule it out. If your doctor isn't willing to immediately refer you, you could ask to try full prescription level doses of an NSAID (non-steroidal antiinflammatory medicine) for a couple of weeks. If it is inflammatory, then regular NSAIDs should make a significant difference to your pain and flexibility, and that would give more weight to a rheumatology request. Also if you have a strong family history of any kind of autoimmune disorders (rheumatoid arthritis, coeliac, crohns or colitis, ankylosing spondylitis, psoriasis, etc) as AI disorders do run in families.
Hi earthwitch, sorry for the delay in my reply but not a good weekend! My issues started at around age 37, no injury or accident. My pain consultant referred me to a Rheumatologist just last week for the reason you mention, he also said I may have Fibromyalgia and the Rheumatologist could also help with that. He mentioned Methotrexate? I haven't heard of Spondyloarthritis do you have experience of this? I was on prescription NSAIDs for about 15 years but my GP stopped them last May as I was getting regular urine and kidney infections and he wanted to stop them before they damaged my kidneys. I have been having ultrasound at the Physio for about 5 weeks and feel that really helps for a short period of time. Yes my dad had debilitating arthritis', bless him. His came on all over him after having a gastroenteritis bug, rheumatoid, poly, osteo. He had hips, knees and finger joint replacements. Mum has septic arthritis in hands and wrists and gout in her feet. So a close family history. I have rheumatoid blood tests every so many years but nothing has ever been positive. I didn't realise you could get a negative result and still have something awful. Thank you so much for the information xx
Just an update following your kind reply to me. My pain consultant referred me to a rheumatologist for a review but to be honest he didn't seem to be very interested and I felt he was pretty heartless in some of the things he said. Anyway the outcome was my blood results do not show any raised inflammatory markers so he said I do not have any type of inflammatory arthritis. However, I forgot to mention about the sero negative thing you mentioned because I was so stunned by some of the things he said!
He couldn't tell me why I have so much pain or why I cease and lock up so quickly and badly. He said I need to stop searching for answers and accept my pain as there may never be an answer found and if he saw me in a restaurant he wouldn't know there was anything wrong with me!! I was so taken aback that I could not think quick enough to respond and then he was onto the next thing.
He said my all over pain, tiredness, not sleeping etc was consistent with fibromyalgia, probably caused by my spinal nerves being compromised before my two surgeries. He did a quick exam and said that I have that as well as all the arthritis and other spine things going on. He persuaded me to try some NSAIDs as I had had some success with prescription type for donkeys years before my surgery even though my GP stopped them before my kidneys suffered.
So I have one I haven't tried before, Arcoxia (Entoricoxib) 90mg for pain and ceasing up and Amatriptelyne 10mg to help my sleep. I will try the Arcoxia first. Supposed to see him in two weeks but not sure I will be paying for the pleasure of making me feel like a numpty again! My GP was horrified when I told him what he had said!!
Just wondering if you have any thoughts or maybe have experience with these drugs? Thank you x
Good morning,I have 2 bad knees and I take tramsdol q6!hours sounds like u have restless leg RLS for your legs I take requip twice a day, but the most important thing is to excerises daily or physical therapy as for your spasms
I get them but not on a regular bases ,I had to learn how to walk which has been very hard
As for your other health issues,I think u should talk to your doctor about
Hi Cverdi, thank you for your reply and sorry for the delay in my response. I have two bad knees too 😟, the left is ready for a replacement but I can't have it done while not mobile and can't face more surgery at present anyway! I will check out RLS, I thought it was just leftover stuff from the neuropathic pain I had following my surgery as my feet still vibrate all day, every day.
My biggest problem is that I cannot walk more than a couple of hundred yards on a regular basis without severe reactions in my back. I started my walking at 30 seconds and now up to doing one little walk of 6-7 minutes once a day, so hard to do but I do it 😃😃. I have a host of exercises I do for my core and leg strength each day so that's good. I also have a couple of little peddles for the cycle action that the Physio has just added. I go to a private Physio weekly for massage and muscle release also have acupuncture and lots of other techniques. The Physio is really thinking outside of the box but I feel I have now come to a bit of a standstill. I am desperate to be active again and go out for a little walk with my dogs and partner. Thank you again and hope that you have had a reasonable day xx
First of all, and most importantly, A BIG, BIG welcome! It may sound rather clichéd but I, indeed ALL of us DO mean it.
As regards your blood results, yes they are all within the 'parameters' but you feel like sh....erm, no wait, I mean....sh.....you know poo! (not sh...you know Schweppes). Unfortunately this can happen-not everyone gets reliable, indeed any, 'markers'-in other words 'nothing' shows in your blood results. Not helpful, is it?
Can I add a few 'ailments', that you might not have mentioned? Let me try-Constipation (yes that, how long has it been?), other 'tummy upsets'. Eye trouble? Skin rashes? You see ALL these 'things' are related. And (you should NEVER, not ever) start a sentence with 'and'-as you say, pain, pain and, yet more, relentless pain! Given time A 'pattern' should start to emerge-this pattern should, with luck, act as an 'indicator' to your condition. (I get red eyes and general 'malaise').
Sorry I can't b e more help Taliswood, I hope you start to feel better soon-again I mean no Sarcasm here.
Yes I do have quite a few other things but thought I had mentioned enough to start ☺️☺️. As you can see from my reply to earthwitch above I have gone another step and seen a Rheumatologist. I have joined the Fibro group here and they suggest a number of blood tests so that's the next step seeing my GP and discussing properly with him what my results above actually mean for me. I have also picked up a lot of info from this post and also the one on the Thyroid group and so wanted to thank you for taking the time to reply to my plea. Hope you are having a good day today 😃
I have just returned, from holiday, to find your 'post'. Do see your GP/Doctor(s)/Consultant(s) and discuss 'everything', with them. Equally any other 'groups', that can give you further information. Please do stay 'in touch', with us all.
B12 is low in range do ask members on the PAS (Pernicious Anemia) forum, which is also for B12 Deficiency sufferers.
My hip, bum, lower back pain, tail bone pain, restless legs at night, sciatica leg pain, stiffness when getting up out of chairs and bed in the morning,, was all down to a vitamin D deficiency. I too found it difficult to stand or sit for long.
5000iu of D3 cured all these almost overnight.
(Best to take vit D3 with vitamin K2 100mcg.)
I too had low in range vitamin B12
Electric shocks were awful, remember them well, only when I was optimally medicated with Thyroid hormone (I am Hypothyroid) did the shocks go, My electric shocks were happening quite frequently. I told my Doctor about them but he had no answers,
Vitamin B12 Deficiency and low thyroid (Hypothyroidism) mimic each other or you can have both together.
Not sure if the shocks are also down to B12 Deficicency, pins and needles are and I had those too.
Do ask also for Thyroid bloods and these others bloods to be done Taliswood, get a printout again and post them up or PM me or even pop them up on Thyroid Uk for members to help you forward, Doctors are known to over look B12 Deficiency and thyroid patients, I read about it from members everyday.
Thank you so much for all the info provided. Your symptoms sound amazingly familiar. I have had a lot of neuropathic pain in my legs and although most of that has decreased my feet still vibrate all the time and the leg jumping which does make me and my partner laugh when it starts at night. I did post on the Thyroid group and they have provided lots of info too. As you might read from the comments I have just added above, the Rheumatologist thinks I have Fibromyalgia so have joined that group here too. They to suggest having Thyroid tests to eliminate that before accepting what you have is actually Fibro.
I am so interested in all the stuff you and the others in the other groups have come up with. B12 deficiency and low Thyroid mimic each other and also Fibro and Thyroid. I have lots of detail to go forward with. Once I get the tests done I will be back in touch. Thank you so much 😃
I was so surprised when I read this comment of yours but having now done a little research it has opened my eyes. In all the years (over 16) I have had joint and bone pain and problems not one consultant, specialist, hospital or GP has ever mentioned this. I now understand that although I am within the normal range that I really should have a reading up near or over the 1000!! If you don't know, how are you supposed to know the questions to ask? I know a vicious circle! I thought I had made myself quite well informed about my health issues but vitamin and mineral deficiency is something I had never even thought about until now.
Well you learn something every day lol, I have always believed that no matter how much you think you know you can always learn something new! Thank you again x
Can I also add Taliswood, now you have opened your eyes this is most important, despite what is said by another community that knocks it, that FIBROMYALGIA or CFS Cronic fatigue syndrome, are BOTH 'listed' down symptoms of both Low Thyroid (Hypothyroidism) or Vitamin B12 Deficiency or both.
My Fibromyalgia all over pains was cured overnight once optimally medicated. Many with fibro do not get diagnosed, they are overlooked/missed, if Low Thyroid or B12 is lucky enough to get diagnosed many still have the fibro pains as they are not treated optimally.
Only when I ask for my thyroid meds to be upped did my all over fibro pains go. I now self medicate with my own bought thyroid medication as my Doctor stopped me at too low a dose, Dr. preferred to look at my unreliable bloods to see if I was well, not my actual symptoms. That is why many think having fibro is for life, I often wonder how many with fibro have missed out on the chance of a cure down to someone telling them that Fibro cannot be cured, despite Fibromyalgia being listed down a symptom of both Low thyroid and Vitamin B12 Deficiency.
I also believe that some fibromyalgia is incurable too.
So pleased you have done your own research Tailiswood, yes they do not tell us theses things same as they do not tell us about nutrition. Think how well we could all be if we all knew about these things, but then big Pharma would and others on commision would loose out big time
I too did not realize the power of vitamins and minerals. Yes my thought too that we learn something new every day.
I have also learned that 97% of cancer is curable, but that too is covered up as there is big money to be made keeping us all ill.
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this is most important, despite what is said by another community that knocks it, that FIBROMYALGIA or CFS Cronic fatigue syndrome, are BOTH 'listed' down symptoms of both Low Thyroid (Hypothyroidism) or Vitamin B12 Deficiency or both. 
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