Hi everyone, Tuesday I had one of the worst day in my life, I had legs pain from hips down, I felt my legs are heavy and 1000 needles pricking my skin and burning inside ..
I am back an forward to the Gp but is no action taken and I have the feeling that is not believing me.. I am so disappointed and frustrated and I suffer in silence most of the time 🙁, is more frustrating because I have been diagnosed with Fibromyalgia and severe depression, anxiety, fybro- fog , insomnia and is ridiculous how they are dealing with all this situation.
I asked about some painkillers or something to ease my pain and they gave me Naproxen and some sleeping pills to take at night but I was vegetable while I was taking them so I stopped them.
I even paid £1000 for 12 sessions of acupuncture, acupressure massage and cupping 😞
my question is .. anyone has experienced this with your Gp ?
Written by
Alice2004
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I don’t have fibromyalgia but I have inflammatory arthritis, spinal stenosis and Polymyalgia Rheumatica. I saw your post and thought that sounds similar to my experience but mine includes the feet. I have been having this for a long time and medication hasn’t been successful so far.
My GP point blank refused me any pain relief besides amitriptyline, they are terrified of you getting addicted since the opioid crisis in America. It was the second time I was outright refused by a GP. When I was first diagnosed around 7 years ago it wasn't like that and at time I didn't want strong pain relief, being a bit in denial.
However my friend who has a different GP at another practice has had the whole world thrown at her feet including an entire week retreat at a hospital or a specialist pain centre including all number of therapies, with access to a hydro-pool sauna, massage etc!! She couldn't believe it herself.
I get a lot of leg pain, especially in the evening. And while my meds help take the edge off, they don't really help - so I use my own pain management techniques such as heat, massaging, weighted blanket, stretches
This is a horrible symptom that many of us suffer with , pins and needles , restless legs , dragging pain from the hips to the thighs , mainly they are connected to the Fibro issue because they are neurological in nature.Naproxen is an anti-inflammatory, so if the pain is not inflammatory and nerve based it won't make much difference . It's also strong and can cause stomach side effects so being prescribed it when it doesn't work is not good service from your GP. I don't know which sleeping pill you take , but if it isn't one that can also help nerve pain it won't help except for allowing you to get some time recovering when you sleep.
Your GP has either little experience of treating Fibro or nerve pain or is disinterested in improving their knowledge to give you better care. Either is unacceptable. They cannot just refuse you any further treatment.
You can request to try other medications more regularly tried for nerve pain issues . Things like Duloxetine, Garbepentin, Pregbalin, milnaciprin and Amitriptyline may help.
You can get drug options which can help your Depression and Sleep which are also used to manage Fibro and Nerve Pain , your GP should be looking at these options and the best dose to use for you to try which will treat the whole body and mind.
I would suggest you print off some information from the Fibro Charity website on treatments . Or request trying a different medication , perhaps have someone with you for the appointment as a witness. If they refuse to prescribe ask what medical reason they have to refuse you . If they still refuse request a referral to your Pain Clinic for more specialist assessment if your needs.
If they refuse that , ask for a second opinion explain you will have no other course if action but to put in a complaint externally.
Unfortunately, I've found over the years that there is nothing that makes you feel more sick than trying to get well. The greatest Stress we often have is trying to deal with Doctors with no real knowledge or experience of the illnesses we suffer whom won't work with you or listen to you. And , unfortunately, it is very hard to push for what you deserve when you already feel too ill to do anything else.
Doctors do need training by you the patient over time to know that they aren't the only ones in charge of our treatment , there are guidelines they must follow from NICE or their local Trust even if they don't want to , and our treatment plan is meant to be created by both them and the patient equally.
That's why forums and charity website info are so important to use. Read up on what is available and what you are entitled to try and go in to an appointment or call armed with your list of requests and questions written down so you can look at the list and not lose your track . Tick things off to know it has been discussed.
Be polite , positive , but firm , and use your evidence to prove to them you know what you are talking about ( even if they don't) and won't take a simple No as an answer unless there is a good reason in your personal medical history to prove it.
If you find it hard to do this alone do ask a friend or family member to help you , discuss what you are requesting and get them to talk on your behalf. You can also get help from patient advocate groups .
You could also benefit from having some blood tests done to rule out low vitamins or minerals making your symptoms worse. You can request these tests if they have not been done for some time . Full Blood Count , Kidney panel / electrolytes, Vitamin B 12 , Ferritin/ Iron panel , Folates , Vitamin D and Magnesium. Low levels and deficiency in these nutrients can often be the cause of increasing nerve pain , fatigue and other neurological/ psychological symptoms.
After blood tests , if the results are normal you would still find improvement in tingling pain if you take a combined vitamin and mineral after a meal , and additional Vitamin D , Magnesium and B 12.
Raising your legs when you sit down and raising your lower legs on pillows in bed can help. Gently brushing of the skin from the feet upwards with fingers or a fluffy cloth can ease things if you can tolerate touch. Using a Magnesium cream or spray lotion on your legs and arms at night can also ease the symptoms . Gentle rotating exercises through the day of the ankles and foot pointing can improve circulation and reduce pins and needles.
Increase your water intake each day as well if you don't drink the recommended amount if fluids , nerves need water to heal and work properly . Neuropathy gets worse with dehydration, which can happen to the body even if you aren't thirsty.
Good morning 😊 Do you mind if I ask do you have some kind of medical training. I only ask because all your replies seem very in depth. And to my limited knowledge medically correct xx
If feel like I should have qualified for something by now.I've spent years doing my own research , reading the available medical worldwide research materials , and I was lucky enough to be accepted for membership to various professional medical libraries , for the various health conditions I have in order to get the right diagnosis and treatment. I've also had to do the same for a number of friends and relatives when I had to act as their advocate at appointments.
I had to try and get treatments cross regional borders and so it became necessary to learn how the referral systems work and it became important to learn NICE guidelines for my conditions for that to ensure that I received the treatment I was being denied which I knew to be available.
As there was very little Self Care guidance , and still is very little help in terms of appropriate exercise and supplementation , that became the next trial and error study. I was basically treating my conditions for a number of decades before I could get the right help professionally so I knew I needed to make sure I was well informed medically not just holistically.
At present , I am working with my Physio to try and create a better exercise and pain therapy programme to help people with chronic pain and autonomic nerve dysfunction , and I'm undertaking training to give patient led pain management advice in my area. Our hope is to get to the point were we could publish our findings and get them into common practice.
To be honest without the help of charities and forums like this one I would not be were I am now . It's groups like this and local support in the early days before online groups that sent me in the right direction in the first place . And when a new condition pops up for me that I haven't needed to research before it's always forum groups that help with the first steps about what to do and what research. That and a little stubbornness on my part !😄😄😄
Yes I hav sililar experience. With leg hip pain tingling etc for a few years now. It's badly affected my walking ability.I have Fibro. Doc , Nov 2022 told me not to go back to see him unless I have new symptoms.i gather he is fed up of me. No suggestions what might help or ref the cause. Without my husband's help I'd end up in a home!
I saw another GP in the practice. She noticed I had taken Trazadone Hydrochloride for years (originally for sleep. She said one of the side effects can be leg problems so I've weans off them. Will end up with amitrypteline I guess. No idea if they will help. We will see.
Volltorol high strength makes a tiny amount of help. Morphine has nil effect. Had Nerve test which came out as 'normal for my age '. Good Luck. Hope you get some help.
Hi Alice, I'm.like that every day with my hips and legs ,just lately it's pain all.over all I get told is to get exercise, I'm.on.my legs 4 days a week for 4 hours a day ,trying to see or speak to.a GP is a nightmare so.i really feel your pain.
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