Need advice how to get the right medication

[Matteo1980]

Hi there ,i would like to get some advice,please. I am type1 from june of last year. I probably was diabetic much earlier,because having serious nerve pain,numbness and tingling in my legs/toes. Not to mention the burning sensation that i have everywhere,under my chest. Am also having urge to move my legs in every few minutes,i may also have RLS,next to my peripheral neuropathy. I had previously an other GP,who was struggling to send me to the right places,to find out more about my condition and to name my sickness. Fortunately my GP seems more professional and wants to send me on blood tests,pain clinic,eye tests and to a neurologist. So officially not proven yet my condition,however the symptoms are there to make me guess. I was put on many painkillers and drugs in the last few months. The only thing that helped me is the dihydrocodeine. But,doctors do not like to prescribe it,because it can be addictive. And here I go. I cannot work/sleep/walk because of the gradually worsening pain. I am on gabapentin now for 1,5 months,but doesn’t work. Fortunately doctor gave me some of dihydrocodeine,too. I am away from work for 2 weeks now,coz of the several pain. I am taking only gabapentin during the day,even of that doesn’t do anything to me,apart from making me drowsy. But i am hoping and doing what doctor says. I am saving my daily 2 dihydrocodeine pills for the night time,to get rid of the paind and to be able to sleep few hours. If i would be addicted to it,i would take them earlier of the day. I am absolutely not addicted to it. But this is the only thing that helps me to live my life like before,easing the pain and i am able to work. I would need at least 4 pills for a day to be able to work and sleep. 2 for daytime and 2 for the night. My question is,what can i do to convince my doctor and make her prescribe me enough to survive? I am happy to try alternatives next to it and if any other will work,i will change to that happily. But right now,there is no any other which helps me. Please help me,how can i get the right amount of the painkiller,until my tests will be done and will get the alternative,aimed and working treatment?

Thanks for any help!

 

[Juicyj]

Sorry to hear about your pain @Matteo1980 however as a forum we cannot advise you on your medication or indeed how to obtain more of it, you need to have an honest discussion with GP regarding your pain threshold and what your enduring with this. My best advice is to really maintain good control with your diabetes and read up on Dr Bernstein too, ideally with taking good care of yourself then there is the possibility to reverse some of this damage which is ideally the best outcome rather than increasing your medication.

 

[Guzzler]

This may be why your GP is reluctant to prescribe more dhc.

https://www.ncbi.nlm.nih.gov/pubmed/27042732

Your doctor is, imo, doing the right thing by trying to get to the root cause of your pain rather than treating the symptoms (even temporarily). I hope that you are given a firm diagnosis and treatment very soon. Good luck.

 

[kitedoc]

Hi @Matteo1980, Has the gabapentin been increased as per protocol? For example there will be a protocol for treatment of neuropathic pain in palliative care, and even though that is definitely NOT the area you belong in, the specialists there do have a lot of knowledge about neuropathic pain, too. Your GP might be able to have a word with one of them about your pain or find the sort of protocol they use.
In Australia, pregablin is often preferred to gabapentin so is a switch possible if the gabapentin has reached its limits??
Small doses of amitrytyline, 10 mg to 75 mg have been used for neuropathic pain with a friend of mine in addition to pregablin.
Another has found a TENS (Transcutaneous Electrical Nerve Stimulation) machine helped his pain.
I have Restless Legs Syndrome. As far as I know it is not diagnosed by tests but is more common in diabetes and some other conditions including low iron levels. see Wikipedia. My GP diagnosed mine so I would not expect you would have to wait to see a neurologist about it. The essence of RLS is this irresistible urge to want to move the legs (arms too sometimes) as a way to gain relief from that feeling. I wonder whether this movement sets off your neuropathic pain. So I further wonder if relief from RLS would in fact help ease the frequency of your neuropathic pains.
I agree with others that painkillers for neuropathic pain are not a good long term solution. A palliative care doctor once told me that neuropathic pain is not as responsive to pain killers as to other treatments when they are properly applied and in fact the patient needs to be almost continually 'bombed out' on painkillers to have full relief.
maybe you could work a deal with your GP, grade down pain killers in conjunction with review of doses of gabapentin vs use of pregablin with expert input (such as palliative care ) and a definitive diagnosis and treatment if required of RLS.
just a suggestion.
You also need to know what side-effetcs RLS medication can have, that it is also used for Parkinson's disease but not because of any connection with RLS and that some medications can make RLS worse and thus combat the relieving effect of medication for it. Caffeine can be increase RLS also. I have to restrict myself to a maximum of 3 coffees per day.
Good luck !!

 

[Matteo1980]

Thank you for your input guys,indeed. I did not mention: i tried a bunch of other medicines,such as like amitriptyline,duloxetine,co-codamol,naproxen...etc. None of them relieved the pain. I tried tens machine,too. I also have tried different gels. I am out of hope. I was going to doctors with my pain from last june. There is no even a diagnosis yet. Still not confirmed by any specialist if i have nerve damage,or whatever. This pain is totally ruined my life. I cannot sleep over a single night. I am exhausted. When i get out in the morning from the bed,the pain is still there and i know,have to go to work 12-14 hrs,as a grill chef. So you know,standing in the kitchen,all day long. Then going home,no sleeping and the same....i would be the happiest person on the planet,if i would have another medicine,which is working properly and isnt’t a drug. Of course,happier without any pain. Currently i am on 2800mg gababentin,daily. No effect at all,but a lot of unwanted side effects. Anyway,thanks a lot for answers and trying to help me. I just hope that i will get a accurate dignosis and get an aimed treatment. All the best to you all.

 

[Mike d]

That's just misery for you so I REALLY hope you can get some decent help

 

[Matteo1980]

This may be why your GP is reluctant to prescribe more dhc.

https://www.ncbi.nlm.nih.gov/pubmed/27042732

Your doctor is, imo, doing the right thing by trying to get to the root cause of your pain rather than treating the symptoms (even temporarily). I hope that you are given a firm diagnosis and treatment very soon. Good luck.

Yep,i am aware of those things,thank you for pointing it out,anyway. I read a lot about these facts. I would not like to take any medicine. There are days,when i am away from work,when i fight with the pain and do not take anything. Rather i take before bedtime,to be able to sleep few hours. Unfortunately,i have nothing else to relief the pain. That is all. I haven’t been referred to any specialist to find out the root of this pain. I am just waiting and hoping. Thanks for your time and tried to help me. Cheers.

 

[Matteo1980]

I will try to describe my symptoms,maybe someone knows what could it be,as it isn’t recognised by any doctor,officially. I have’t got any test done,yet. First of all,burning sensation,from my tummy,down to my thighs. Tingling and numbness at the sole of my feet. Shooting pain randomly in my legs. I might be wrong,but it ticks all the boxes to be peripheral neuropathy. However,i could sleep and work next to these symptoms. My biggest problem is my knee pain. It is rather an ache. All the time i have to massage them to ease the pain. But as soon,as i stop massaging,hurts badly,like before. That ache is 24hrs long,i do not have a minute break. I am going crazy. I am crying over the nights,rather having a good rest for the next day’s hard shift at work. So many times i have to walking,as i do not feel much pain,when i am walking. I am not 100% sure if it is a symptom of peripheral neuropathy,but of course,who am i to state any diagnosis. I just assume the things by readings on the web. It is hard to say for sure it is a joint pain or comes from somewhere the tissues. In fact,massaging helps,so could be nerve related pain? Who knows. Dihydrocodeine does nothing to numbness and burning sensation. I feel them,still. But the more painful and disturbing knee pain is well relieved.

 

[kitedoc]

Hi @Matteo, June is a long tome to have been suffering for.
Way back in about the early '90s I attended a palliative Care conference in Australia. present were some eminent UK doctors who described a recently enacted law in the UK where doctors must ensure a person's pain is managed appropriately. It was set up some years ago in particular reference to persons who were in palliative care where pain is often a major symptom.
But was legislated to cover all persons.
I would be requesting information from your Area Health about this law and asking why you have not been afforded more consultant and expert help in this matter.
Best Wishes.
PS as temporary pain relief (weeks to months) for neuropathic pain I have read that a medication called ketamine has been useful. Even if it can give relief whilst more tests etc are carried out that would be a mercy I would think.

 

[Matteo1980]

Hello @kitedoc,thanks for your useful information! Fortunately,I have a new GP now. She stated at my first visit that she wants me to go pain clinic/neurologist/several blood test to monitor any insufficiency that can cause these symptoms. I am very glad and consider it as a brighter future. However,it is known,it can take months to get over the procedures with results. I were given few medication which are going to take more weeks to make their effect on the pain. I was taking them industriously,as it’s been told and ended up with no success. Obviously,i was suffering during those periods,too. Couldn’t wait a month to see my GP again,to ask for something else. It is just impossible to work like this,however we all need money to survive and i cannot afford to be away from work. But now i am away. I am really worried and exhausted. I am just crying in my bed,instead of getting a freshing relax and going back to like i am full of energy and i am recovered. I just do not know what can i do. Dihydrocodeine is a real painkiller. I took 60mg in the morning and am absolutely pain free. Like i never had any problem. I completely understand it is addictive and i wouldn’t like to be addicted! Neither i want the pain....

 

[kitedoc]

Hi @Matteo, you do not have to wait a month to see your GP.
Your situation is too urgent to obey some arbitrary rule about times between visits.
And there is that law I mentioned.
Sometimes the pain has to be managed before all the tests are done. You are experiencing the very reason why that is so and needed.
Pain specialists and palliative care doctor for example know this very well. Interim measures are needed.
Your GP needs to think the same and not be put off by the Pain Clinic assessment process, see you in x months and then wait for results before we do anything.
I mentioned palliative care because they tend to be more proactive. If your GHP has the skills I expect she has she should be able to have a word and get some advice about what next to do for your pain. I am not saying that both you and she have not been trying. But that as you say things are not working, delays and administrivia are the enemy and anti-patient.
There have to be interim measures both for your pain management (and legally so) and as a consequence to aid your need to earn income.
A bureaucracy which threatens both your health and ability to earn income is evil. Point that out to the GP, the Health Area and your MP. Please send a letter direct to your MP stating your situation, get him or her earning their keep.

 

[kitedoc]

HI @Matteo1980,
If you search for palmylethanolamide- (PEA) for short, you will see a thread with this name and some info about it.
While it is not made as registered drug apparently it is said to be very useful for neuropathic pain.
Something for chemists and your GP to find !!

 

[Matteo1980]

I am very impressed,thank you very much darling!! I will have a look on all the things you mentioned. I was recently at the local pharmacist and she arranged an appointment to the GP in 2 weeks time!

 

[Janetoby]

Could these symptoms be related to any other drugs or medications that you use (such as Insulin or Metformin)?

 

[DCUKMod]

@Matteo1980 - If your GP doesn't feel able to help further, without the pain clinic involvement, she may be able to discuss your case with them, before you attend. I appreciate the Pain Clinic will likely want to do additional tests, but they may have ideas to help whilst you wait.

In my area, a GP can either email or telephone a specialist for help where they either don't have the expertise or the specialist knowledge. My own GP has done this for me, for a non-diabetes issue, and it has been very useful. It helped that a series of blood test results helped describe the issue. I don't know if that option cold be helpful in your circumstancess.

 

[Matteo1980]

Thank You,DCUKMod! I am sure it would be helpful. My real issue is to wait for the next appointment to the GP,where i have to get some painkillers. If that doesn’t work,then have to wait a month again to get something else. In the meantime,i am just suffering and hoping that the next appointment will be better. How could i get any help during that time? Many times i went to urgent care,but there you have to wait up to 10hrs to get seen by a doctor. And usually they say they cannot really help me(apart from giving some painkillers)but my GP can. It just seems like,nothing is really going forward and the pain is just killing me. I am crying all the time.

 

[Matteo1980]

Could these symptoms be related to any other drugs or medications that you use (such as Insulin or Metformin)?

Hi Janetoby!

I do not really think that,because the pain started before i started to be on insulin and taking any medication.