Vitamin D deficiency.........NOT Fibromyalgia!!!!
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Over the last few years I have had bouts of tiredness, fatigue and flu like symptoms but always came back round and felt fine. I also suffered from cluster migraines, again, these would disappear and I would feel fine. Over the years various tests, scans etc would be performed and all results would show nothing wrong. 2 years ago I started getting migraines again and they go to the point that I was referred to a Neurologist. During this time, I was prescribed Gabapentin (Neurontin) to help manage the migraines. Once again, MRI scan showed nothing of any concern and blood tests were fine. Then the migraines disappeared and I started to suffer from Trigeminal Neuralgia. The Gabapentin dose was increased and strong painkillers were also prescribed. This was in June 2014. Then the TN just seemed to disappear and I felt fine. In August 2014, one Saturday morning I woke up in pain, feeling sick, aggitated and eventually was physically sick. As soon as I was sick, I suffered from a seizure and was admitted to A & E. Again, all tests came back absolutely fine!!! After this I started to experience a whole heap of symptoms - fatigue, pain, nausea, tremors, hot and cold, the list just went on!!! I was referred to a Neurologist who advised that the pain was a secondary symptom to another problem. Just needed to find the original source but it was out of his remit because it wasn't a Neurological problem. So I was referred to a pain clinic and was diagnosed with Fibromyalgia!!! I argued with the doctor that I didn't believe it and that I felt it was something else. But no, they had decided it was Fibro!! Over the next 18 months, things have got worse, I ended up changing from Gabapentin to Pregaballin but things still got worse. In January I made the decision to come off the medication. My head instantly felt better, my eyesight was clearer, I also had a little more energy but the pains in my bones and joints were getting worse. So a couple of weeks ago I went to the doctor about this. She tried telling me that it was Fibro pain. I told her that it definitely wasn't anything to do with Fibro. So she agreed to run some blood tests. I had the tests on a Monday and 3 days later I received a letter from the doctor asking me to make an appointment to see her to discuss the results. I could only get an appointment for this coming Thursday 27th April. A couple of hours after I rang the surgery I received a phone call from the surgery receptionist telling me that the doctor had just received another result from my blood test and a prescription had been written for me. I asked what it was for and she told me that I had been diagnosed with Vitamin D deficiency. "That's interesting" I said. So I go the script for 3200IU Vitamin D3. Now I don't know what the level of Vitamin D is but since I have found this out, I have been scouring the internet regarding this. It all makes sense and I certainly know that I have NEVER been tested for this!! Why not??? 2 years of my life taking rubbish that certainly also causes Vitamin D deficiency. I cannot wait to find out what else has been found in the blood tests but more importantly what the level is. I am trying not to get cross about this but it is very difficult. I never gave Vitamin D a thought and why didn't they 2 years ago. I have read about so many people being diagnosed with Fibro and it turns out to be something that can be easily sorted. I am just wondering if there is anything else I should be asking to be tested for because it looks like they hadn't covered all bases as I previously thought????? Sorry for the long post but I just hope that this helps someone else who is going through a similar thing being diagnosed with something that it isn't.
1 like, 23 replies
jazzyanne Mrsfred
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ptolemy Mrsfred
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lini38837 Mrsfred
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I am not at all surprised by this post as I was ill for 5 years before anyone checked my vit d level which was 8 last April. Since then, loading doses of vit d3 from my G.P , sitting in the UK sunshine each day for 15 minutes for three months gave me a level of 56. Gp's before had no idea and I was told it was nerve damage in my feet after an accident and given Amytriptiline which didn't help except make me so groggy I could hardly function! In 2010, I was diagnosed with Plantar fasciitis in my feet, no explanation for burning muscle pains in my legs, bone pains all over, constantly fatigued, brain fog, IBS, indigestion, eye problems and insomnia! I was even seen by a chronic fatigue clinic last october when I was improving and they told me that vit d deficiency mimics chronic fatigue/viral symptoms and fibromayalgia and some people are wrongly diagnosed.
Today- none of these symptoms apart from tired muscles after walking more as I am building myself back up again after becoming so de-conditioned. It has been an absolute nightmare as I knew like you that I was unwell, but could not accept what I was being told as there were so many symptoms.
Over the last year, I have read and researched this and it can be 2-3 years of low vit d levels before symptoms start to show as osteomalacia I got to the point that I was unable to walk upstairs or get out of the bath and this was when my GP found the low vit d in a blood test and my bone profile was out of wack too.
I have resorted to taking my own vit D supplements and get blood tests privately to check my levels in the winter. I feel so much better- it's like a miracle to have my life back.
I wish you well.
jazzyanne lini38837
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Mrsfred
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So here I am now, throwing Vitamin D down my throat, getting out in the sunshine when it allows, but the pain in my bones is off the scale. I have more blood tests next week and a follow up appointment at the docs the week after to discuss the results and see what the next step is. My Vitamin D levels will be monitored closely - my doctor has assured me of this. She did say that the general rule of thumb is to prescribe Vitamin D for a period of time and then leave it to the individual to get on with it themselves. She also said that they are still learning the full extent of what amount needs to be given and how long recovery will take.
The day the doctor in the Pain Clinic told me I had Fibro, I sat there and said to him "I don't believe it exists and it is a label you give to people when you cannot be bothered to find out the truth as to what is going on". How right I was.
Onwards and upwards as they say!!
ptolemy Mrsfred
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Guest Mrsfred
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jazzyanne Mrsfred
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jazzyanne ptolemy
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lini38837 jazzyanne
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jazzyanne lini38837
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ptolemy jazzyanne
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Mrsfred Guest
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ptolemy Mrsfred
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Mrsfred ptolemy
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ptolemy Mrsfred
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