Pain Concern

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is it too much to ask?

allyh1968•

hi all, is it too much to ask for my GP to refer me to the correct spcialist ro do I just accept what they are saying is it and nothing can be done?

my lower back pain is getting worse and each night I wake up for pain killers and have to sit downstairs for up to 2 hours before I can go back to bed, the pain that wakes me up is more of a nerve pain (to me anyway) but they say my back pain is due to muscular reasons and to exercise through it.....well i have tried for so long but it gets worse instead of alleviating things. I had an x=ray a few yeas ago which showes mild scolioscis which they thing is brough on by muscle spasms, since then I have had nothing to check how it currently is. My pain has travelled to my hips and one GP thinks it is referred pain and I need to tighten up my hip muscles although I do this on a daily basis by using the exercises that the physio gave me to do over a year ago. Another GP has said to find out where the pain originates from and she will refer me to a specialist.

I feel that i am being a nuisance bothering them but want to find out what the problem is to try and ease it once and for all or to at least know that nothing can be done and I have to cope with it - the pain is more or a discomfort in my hips with stronger pain in my lower back and sends shooting pains down my thighs like sciatica although they have diagnosed Myralgia parasthetica in my left thigh numbness appears in both and from my wais down to my knees it feels all bruised to touch and very tender.

Any thoughts on where I should go from here? it is getting my down a lot lately.

thnaks in advance for any advice x

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allyh1968

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Hi there, sorry to hear what you are going through it resembles what I went through ,never think you are a nusiance that's what I thought and I wish I said something earlier but we trust these people but they are only human I thought they thought i was hypochondriac so please stand up for yourself and get help from family leaving things won't always go away you know your body x

thank you, I have an appontment booked for next week so will push for something further

Lots here you can do.

Muscle spasm brings on pain...it is the body's natural defence mechanism. So you need to relax those muscles.

Go back to the physio who gave you those exercises and say they don't work.

Also ask your GP for a referral to pain clinic. They will look at everything maybe suggest alternative therapies. Also show you how to manage your pain.

If you are doing too much that can cause muscles tightening. Many people say they do little so keep a diary for a week/10 days and when it hurts write down what you did previously. You will be very surprised.

thank you, I will do all that you suggest, I am at the doecots next week so will keep a note form now until then and see how we go, thanks for the advise, greatly appreciated x

Happy to help where possible.

Get you go, to refer you to a specialist and then get things sorted.

that is what i will be pushing for next week at my appointment

I wish you well,

you do have the rights ,

Please keeps us all in the loop.

you say: " I need to tighten up my hip muscles although I do this on a daily basis by using the exercises that the physio gave me to do over a year ago."

You actually need to untighten. See an Alexander teacher. They will help you understand this by using hands on. Muscles are strongest at their longest lengths. Thus the tighter a muscle becomes the weaker it gets.

When you tighten your hip muscles you are probably tightening other things as well.

thank you, I have located a teacher about 6 miles away from me so will try and book an appointment soon

Hi there, my husband had the same problem with the doctors, he was pushed from pillar to post. Acupuncture...physio...etc then he was sent to see a chiropractor who pummelled his fist so hard into my husbands back that he could barely walk out of there. So back to the doctors and more pain killers.

So we decided to pay for a private consultation and he said he thought that Derek had a tumour on his spine and to call our doctors and ask for a urgent MRI which they paid for him to have privately the next day.

So Derek didn't have a tumour thank god but he did have a disc that had ruptured and needing surgery.

So maybe if you can afford it I would suggest to see someone privately.

Good luck x

thanks you, private isn't an option at the moment but encouraging me to push it with the GP to at leacst have another xray

Ask for an MRI x

Hi, my doc first referred me to the musculo-skeletal service who assessed me and sent me for x-ray and mri. Then they decided whether to send me to physio or a neurosurgeon. Unfortunately, they said nothing coukd be done for me and gave me the option of either pain management or a pain clinic. I chose the latter and now have three injections in my back every six months. Brilliant. In our area, everyone has to go through this referral procedure to get the end result. Good luck. x

thanks you, I was referred to the musculo-skeletal service and this is what they hve told me it is and cnt do anything more for me but the pain is getting worse and have not even referred me to a pain clinic which I think they should do at least, I have other illnesses and want a label for this one so I know what I am dealing with. I have arthritic knees but they have ruled out a link between them and my back as well as cardiomyopathy and graves disease (over active thyroid)

Hello to you and sorry to hear of your situation. It does all sound very familiar as for the first 3 years following a work accident I went from pillar to post and just got on with things with the help of co-codamol and occasional visits to a chiropractor. I ended up collapsing at work who called an ambulance and via A&E I had my first MRI which showed two prolapsed discs and a compressed spinal cord. 16 years later I have now had 5 ops, the most recent being SCS, aka Spinal Cord Stimulation.

My advice would be to push for and seek an MRI scan which should show exactly what is the cause of your obvious pain. I had 2 x rays prior to my first MRI which showed nothing particularly untoward as x rays show only certain physical features.

I also switched GP following the result of my 1st MRI as my previous GP had missed the obvious symptoms and had done so previously as well as he had told me the malaria I actually had contracted working overseas was in his opinion, flu !! (Particularly frustrating as I am one of those typical blokes who has to be coerced into going to the Dr even if my leg is hanging off !!)

Best wishes to you for a happy and less painful New Year, Ben.

thanks Ben, everyone has been so supportive and helpful on here and the over all message is to keep on at my GP surgery where there are a group of about 10 doctors - it is just finding the one that will helo me further.

All the best for 2019

Hello Ally, you are more than welcome. Andrew in his reply hits the nail on the head as regards that fine line between being labelled "difficult" and being assertive. A supportive GP who genuinely knows you and your health is invaluable but the key to any treatment whether corrective or simply management, is a firm diagnosis. It might be worth trying to get a referral to your local Pain Management Unit too. The staff there will advise on pain relief and some, like mine, perform injections and alternative therapies.

Keep smiling, Ben.

I have since looked up the symptoms of prolapsed discs and everything seems to match what I am experiencing, they haven't once mentioned it could be that only muscular so will be really requesting help to follow this up (not to be too pushy)

Hi. I am exactly in the same position as you. Have been diagnosed with mild scoliosis and have continual back pain. My feet go numb and tingle and burn 24/7 and my doctor has now said I have peripheral neuropathy in my feet! I have begged for an MRI scan to see what is going on as I feel it could all be coming from my back but he refuses! I have another appointment with a new doctor in the Practice tomorrow and I am going to ask him to refer me for an MRI or to see a back specialist but I do not hold out much hope! All they want to give me is gabapentin, amitriptyline or co-codamol which I can’t take but all I want to know is what is causing it. I am in the UK and not sure how much MRI scans are privately but I feel I will be going down that road next just to eliminate things. Good luck and will be interested to know how you get on xx

thank you for your response, I too am in the UK and advised that a private MRI is around £1000+ - I do have a bit of a problem having them and need to take valium beforehand. I have co-codomol but they haven't offered me the other 2 medications you mention so maybe that may be something else to push for unless because of my cardiomyopathy they haven't thought it would be compatible with my other meds.

You are entitled to insist, even though for financial reasons your practice may resist. If at all possible, if you can find the name of a specialist you want to be sent to, you can ask that you are referred to that person as well. You say that one GP has said she will refer you to a specialist. Is it worth going to see her and asking her to do that for you?

All the very best. Hope you get help in sorting out your pain.

thank you for your advise, I was unaware that I could do that although I am unsure what kind of specialist I would need at the moment but I have an appointent with the GP who said she would refer me next week so fingers crossed she may start the ball rolling

Idea only, ‘some’ lower back and ‘some’ hip pain is linked to low or deficient vitamin D blood levels. Anything to do with nerve pain, numbness and you also mentioned shooting pains, any problem to do with the spine, (from head to toe) get your vitamin B12 bloods checked.

I have a daily prescribed supplement for Vit D and B12 came back within range. Although I have been taken a vit D for a coupe of years now but blood tests still show it as low somay be an idea for that to be increased too, thanks for the advise

👍. Don’t rely on B12 blood results, you still could be low or deficient if you have B12 presenting symptoms and are told Your B12 bloods are normal, (can you believe 🤔) Same goes for many other bloods, that’s why many patients get over looked or missed. The blood ranges are far too narrow and miss many illnesses. (Drs look for high lighted ‘out of range’ markings on the blood tests done by the laboratory testing the bloods, but you can still have illnesses ‘within the ranges’ which easily gets over looked, Hubby and I both did, thankfully with help from others here on HU ! we worked it out 😀😀)

I was Prescribed what my Doctor called a very high dose of vitamin D ( 1,000 iu) because I had walking problems, my walking improved almost over night and so did many other symptoms that I had never mentioned to my Doctor, (fear of white coats carting me off 😉😀) but all my symptoms came back again within a short time. I looked into vitamin D more and found, thanks to other members of HU that 1,000 iu of D3 was a mere maintenance dose that all OAPs who stay indoors should be on.

Once I started taking 5000iu of D3 (along with vitamin K2 which is needed with D3) all symptoms disappeared overnight again and thankfully stayed away, until winter when symptoms started to come back again. (Vitamin D is of course known as the ‘Sunshine Vitamin’ and there is hardly any warm sunshine in winter,)

By upping my D3 again for winter, bingo all my symptoms went away again, chronic lower back pain, my tailbone pain my Dr said I would never cure, (was told to learn to live with it 🙄) and my hips that were paining that my Dr could find nothing wrong with. Also my sciatica type leg pains and restless legs in the evenings, stiffness getting up out of chairs and bed in the morning and winter blues went away too. D3 also helps keep colds and flu at bay which is good if you have respiratory illnesses. Works for me 😀

There is a good book called ‘Could it Be B12 Deficiency,’ an epidemic of misdiagnosis, by Sally Pacholok, can look her up on You Tube.

vitamindcouncil.com is the best ‘up to date’ website for information on vitamin D and for taking high, (but safe,) doses of vitamin D3, also information on blood testing and how to achieve correct blood levels.

a lot of useful advice, thanks very much. I am on 800 Vit D so not enough to keep me topped up by the look of it although not classed as an OAP at 50 yet lol. Will also look into the B12 comments too xx

I’m not an OAP yet either allyh1968, but felt like it at the time 😉😀😀

Dear allyh1968,

Is there Anything, that you can do- you ask? Well if you, really have, exhausted ALL the options with your GP/ Hospital Doctor(s)….Then Ask/ Demand, a Referral, to another Consultant, or Hospital. Please DO 'look up' the Vasculitis Web Site but BE CAREFULL, as with ALL 'Self Help' websites....You can 'Give' yourself, almost anything.....Which is why I don't 'Like Them'.

Basically you need to Assert Yourself, whilst NOT 'Rocking The Boat' too much- bear in mind that 'troublemakers' are not Liked- whereas 'People ASKING, for Help, are a totally different matter- if you see what I'm Driving At.

Sorry that I can't be more 'Help', to you, allyh. I wish you a Happy New Year 2019.

AndrewT

thank you for your advice, I take on board your comment about asking for help as opposed to demanding it so to speak. I will do just that met week at my appointment and will have a glance at the website you suggested

all the best for 2019

You really need to be referred to an orthopaedic specialist. They can advise on what treatment you might need. Please see: nhs.uk/conditions/scoliosis/

great, thanks for the adivce

update on my doctors appointment - mixed feelings but they checked the assessment I had last March which showed some nerve pain/damage although they didn't think to mention it to me although I have been going back regularly saying that the pain killers are not working and the pain is getting stronger! they have given me Gabapentin to try and arranging an MRI - finally. Apparently the reason for not telling me they recognise the nerve pain is because they won't operate on my discs! I feel angry that they hadn't mentioned it sooner and taken the next step of pain management and relived that they have given me a reason why

Hi allyh, I’ve just read your post and had to reply as so similar to me and I’m not getting anywhere really apart from when my disc did actually come out of place and I had to have an emergency laminectomy and lumbar spine decompression, I’d been in bed for couple of weeks, literally couldn’t move and became impossible to go to the loo, took me several attempts till I insisted they give me a bed in hospital, by that time I couldn’t wee, my pain was 10 and simply unbearable. After the op of course I was so much better but a year later started with all these pains from pelvis down, especially around hips, thighs, knees, ankles and toes, my muscles or nerves twitch constantly on left side, my op was in L5S1, I’ve had MRIs and now told I’ve DDD, osteoarthritis and a little osteoporosis, my muscles all hurt like yours, if you press on my hip down the thigh it feels so bruised and tender, was verbally told bursitis but mri didn’t confirm this yet I’ve had it 6 years, no one knows what it is, chiropractor was pretty good and said ask for blood test HLA27 or something like that but it came back negative for polymyalgia rheumatica. I’m sure I’m riddled with arthritis and some RA but rheumatologist signed me off when he knew I had back problems and was to be seen by orthopaedics instead, to be fair I’ve had RF nerve ablation and nerve blocks and steroid injections but all only offer such temporary relief. One thing I’ve had all my life is weak ankles, have to replace shoes very frequently as all heels worn over on the outside edge. As a child my parents noticed I walked badly and at the time it was advised I have special shoes made for me, I wasn’t bought them at the time so had to suffer with leg ache throughout my whole childhood where I couldn’t sleep for pain. I now have insoles specially made but they don’t do enough. I think I have loose muscles and joints like you and this causes the pain. I’m now under pain management and at my last appt I was told to go and join a gym, that I was mildly depressed and to stop looking for a cause for my pain. Such a bully, I felt like a whinging child once again. Please let me know how things go for you. Do you get pain in your feet? The ball of my feet and my big toes often hurt and now my finger joints hurt and look just slightly misshapen. Let me know how you are please and if any updates. I’m female and 58. Kay x

I have now received my appointment for the MRI which I need valium for but although the appointment is 25th February I am stressing about it already. Looking for some advice on how to cope with it and of course there will be the back pain as I am unable to lay flat on my back. I have tried laying on my back with my legs raised by putting a rolled up towel under them but still can't go long before the pain sets in. I am also a larger lady and the fear of how small the MRI scanner is is causing me so much anxiety

Speak to the MRI staff well before your appt, tell them you are very nervous, many units can arrange a pre appt visit so you can have a practice run.

I had yet another MRI last month and lying flat is the biggest issue, apart from my back pain I also get vertigo and don't cope with enclosed spaces, nightmare but I did it.

Good luck 😊

aw well done for managing to do it! It is a nightmare with the pain too. As it happens my neighbour works at the hospital so will ask her if she can book me in for a practice run. Thanks for the advice

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