I don t understand some docters

[jamel]

I have been suffering from fibromyalgia for years.every docter have different song .most of them don t care that mutch.as far as they complete the theory on there pc.to protect there carrier.i am 46 male .married. 3 kids.i am full time worker .i find it very hard .pain all over my body.can t sleep .depressed.i don t like to go see my docter .same story! try different medication.i don t know what to do??????

[Hartleyhare2]

I would get a referral to a rhuemetologist at the local hospital. Sometimes sending it in writing to your GP makes it more difficult to fob you off as it is on your file. I empathise with you, an awful lot of us have had to fight to get our condition recognised. As their are no set guidelines for treating fibro it can be hit and miss.

I think you have to come to the realisation that you are the manager of your health condition and you have to manage the health professionals to do what you want.

Diagnosis from a Rhumetologist usually comes first then a referral to a pain clinic for physio, CBT, cognitive based therapy, usually group and a review of meds. You have to push, no joy find a more sympathetic Doctor.

Cheers Patrick

[jamel in reply to Hartleyhare2]

Hi.thanks for reply.I seen a rheumatologist .he was just writting my answer to his questions.had scan done.he said your gp will help u to manage the pain.cold

I don t think they know what to do .to be honest

[Regnofibro1]

Or neurologist sometimes they can help too!

[jamel in reply to Regnofibro1]

Thanks for replying

[Mrs_allen]

i am the same. went to doctor today and he is getting me to do blood test but really sire why when i have been diagnosed 9 years. he was talking about steroids and pregablin and dihydrocodeine isnt working very well. i work full time too, its a killer some days

[jamel in reply to Mrs_allen]

I stop taking all my medication.but can t stop talking dihydrocodeine.i am addicted

[TheAuthor in reply to jamel]

Hi jamel

Welcome to the forum and it is wonderful to make your acquaintance. I have pasted you a link below to our mother site, Fibromyalgia Action UK which hosts loads of useful Fibro information, so it is worth reading about Fibro treatments and ideas on there.

fmauk.org/

I am so genuinely sorry to read that you are suffering and struggling in this way and I sincerely hope that you can find some resolution to these issues.

All my hopes and dreams for you

Ken

[C_C_]

Don't know if it may help but I'm taking Amitriptyline. It is an "anti-depressant drug that has the added benefit of helping with fibro pains. I am currently taking 120 mg to help with my depression as well as my pain. Biggest difference I've noticed has been with my sleep. If I can sleep better I feel like I can cope better. I have also found Epson salts in a hot bath before bed really helps with the pain. I put around 2 cups per bath. I have learnt one thing over the years, Dr.s are there to irritate and agitate us. Mine would constantly tell me to do yoga and to stop feeling like a victim. He as most Dr.s was a total tool.

Hope this helps

Cris

[jamel in reply to C_C_]

Thanks mate.i am a driver .amitriptyline make me feel sleepy in the morning.its more complicated when u work full time and physical.

[TwinklingStar]

Dear Jamel

WARNING: I note that you work full time as a Driver - you should not go through this opioid rotation programme whilst working or driving or using any mechanical equipment, etc. The only thing I can suggest you do that you could do whilst continuing to work is to reduce your Dihydrocodeine really slowly WITHOUT any back up drug. Break the tablets in half to reduce more slowly. Once you are off it you will be able to re-assess your pain levels and find out what is actual pain and what is being caused by the Dihydrocodeine tolerance=addiction=constant withdrawal symptoms.

You need to sort out the problem of being addicted to Dihydrocodeine. It is very easy to become addicted to this drug if the correct precautions are not taken. It is an extremely strong and powerful opioid. Everyone who is on any opioid should go through what I call "an opioid rotation programme" or two week reduction programme followed by two weeks without any medication. This needs to be done to re-assess what pain is real and what is being caused by the various medications. If you don't do this your tolerance for the pain killers will increase and the medications will no longer work for you. You will then need to up the dose. If no precautions are taken the same will happen quite quickly and you will need to up the dosage again. It won't be long before once again the raised doses will again not work for you.

I am not a Doctor and I can only tell you that I have very little choice of medications which I can use which successfully control my pain due to having a genetic disorder. I have found the ONLY medication which works for me IS Diydrocodeine. However, if you don't regularly go through the rotation programme you will eventually be plagued with withdrawal symptoms where you body is crying out for raised doses and the drug will not work anyway! I have successfully used this drug since age 23 and I am now 59.

This is what I always did at least once each year and it worked for me. Once every year I would choose a time when I had little to cope with, felt at my strongest and best, and at a time of year when I felt my pain levels would be less difficult to cope with. You need to get a different medication from your GP. One that you can take with the Dihydrocodeine but one that will hopefully allow you to cope temporarily without the Dihydrocodeine. I was forced to use Tramadol which was not strong enough really so it made the two weeks extremely difficult to cope. REMEMBER YOU CANNOT USE TRAMADOL IF YOU ARE STILL WORKING AS A DRIVER!!

So firstly, I don't know what dosage of Diydrocodeine you are taking but first before you get the Tramadol you need to slowly reduce the Dihydrocodeine. So I was on 90 mg 4 times a day. Unless you are able to sleep through the pain it is always best to keep to 4 doses in 24 hours otherwise you will get times when your pain is way out of control. So first I reduced to 60 mg taken four times a day. Then within a couple of days or a week you need to go down to 30 mg four times a day. It is now that you need to have your replacement opioid available - preferably enough for 3 weeks at 50 mg four times a day. So now you need to replace your dose of Dihydrocodeine before going to sleep with one 50 mg Tramadol. Do that for a few nights. Then you need to replace your second dose of Dihydrocodeine with a 50 mg of Tramadol. So now you should be on: First dose = 30 mg Dihydrocodeine/Second dose = 50 mg Tramadol/Third dose = 30 mg Dihydrocodeine/Bedtime dose or Fourth dose of the day = 50 mg Tramadol. Then you need to replace the third dose with 50 mg of Dihydrocodeine for at least a few days. Then replace the final 30 mg of Dihydrocodeine with 50 mg of Tramadol. Now you need to spend two full weeks without ANY Dihydrocodeine but ONLY if you can cope. If at any time you start to have dark thoughts then just take one. The fewer you take during that two weeks the better you will feel afterwards.

Don't drag the process out for too long because it will only mean you suffer with the withdrawal symptoms for longer.

Now I am not saying this will be easy - withdrawal symptoms are always difficult to cope with. However, plenty of warm baths for when you perspire like crazy because your body is crying out for you to give up and pop one of those Dihydrocodeine in! Don't give in unless you have to. Don't put yourself at risk if you cannot cope - give in and take one of the Dihydrocodeine. I had give in two or three times during the two weeks because of not being able to get the support of my GP to do it for the last 14 years!

The next question which needs to be answered is - "Did the Dihydrocodeine originally work for your pain?" If the answer is "Yes it used to work" then after two weeks off it you need to gradually swap back to go back on it.

If the answer is "No it never worked for my pain" then you need to make sure you have discussed with your Doctor a suitable drug to replace it. Is the Tramadol now controlling your pain - now that you have gone through the withdrawal and the increased pain caused by withdrawal - is Tramadol now working for the pain. If it is then you could tell your Doctor that it is working for you and ask if you could stay on it for a month or two.

Now you really need to get the support of your GP to do this. Tell the GP what you are planning to do. This was the problem I had since moving to Scotland I couldn't get it through to my GP how important it is to come off all your pain meds for two weeks and replace them with one new one. This needs to be done so you accurately assess your pain. If you can get off everything you may find that it is the drugs which have been causing some of your pain and that it is in fact easier to cope without any at all! In my case I would find that impossible. Having not received the support of my GP of the importance of doing this it was so much harder because I had been on the Dihydrocodeine without a break for so long.

This needs to be done carefully, slowly and with the support of your GP. They need to understand that if you don't do an opioid rotation programme once a year your need to increase the dosage will be inevitable and in the end you will be on the highest dose allowed and the drug will not work for you,

When I went back on the Dihydrocodeine I was able to start once again on a low dose and now I have done it this year if the same GP is there I hope she will support me in this necessary process each and every year!

WARNING: Do not do this if you are not feeling stable psychologically. Do not let anyone force you to do this at a time when you feel you cannot cope with it. Try to do it when you have little to cope with and much time to rest. If you need any help please send me a private message.

If you don't feel you can cope with doing this please discuss the problem of the addiction with your GP as you need to get this sorted out as soon as possible. It is very likely that the Dihydrocodeine is no longer helping you control your pain because you have built up a high tolerance for it. It is highly likely that some of your pain and other problems are being caused because your body is crying out for more and more of the drug and that you are basically in a constant state of suffering with withdrawal symptoms of increased pain, terrible sweating, insomnia, and other problems.

Keep Smiling or in my case Keep Twinkling

Love and Hugs from Twinkling Star Xxxxx

[jamel in reply to TwinklingStar]

Hi thank you for the caring reply.thank you very much

[TwinklingStar]

I know my posts are long and often very repetitive. However, if you read it you would have seen that I SPECIFICALLY pointed out that as the original post was from a Driver he should NOT carry out this routine whilst working/driving or operating any machinery. I believe I made that clear. I am sorry maybe I did not make it clear enough for everyone.

Although, after reading your post a second time I am not sure whether you meant to post what you said, Dan. Did you mean it is LEGAL to drive on strong Opioids, or did you mean to say it was illegal. I am sorry but I found the wording a little confusing. I always have this problem when a sentence includes double negatives - not your fault just my brain never can work out which way round it is meant to mean.

Also I stated that I am not a Doctor and that this is something I have personally done to enable me to continue with a drug that suits my condition. There is nothing worse than finding a drug that suits your condition and then to find that it no longer works because you have built up a tolerance for it. All opioids are addictive so this would certainly happen with all opioids and with many other groups of drugs too. It is very sensible to try to re-assess your levels of pain if you are able to do it. I did stress that you SHOULD NOT do it if you cannot cope with it.

In my case I need one of the ONLY drugs I can use to continue to relieve my pain for the rest of my life as I cannot cope without an appropriate pain medication. I don't like to be continuously trying new drugs which often cause me to have life threatening or at least extremely severe adverse reactions. If you just keep on and on taking medications of this category without ever changing them it is just common sense to know that your body will gradually build up a tolerance for them and they will no longer work. If you ask any knowledgeable Physician they will be eager to explain to you the ramifications of becoming tolerant and or addicted to medications. I personally don't require a Doctor to inform me, or a text book, to prove to me what is just plain common sense.

When talking about the strength of drugs it is all really a matter of relativity. Dihydrocodeine being a Class 2 Schedule drug in my opinion is a strong drug when prescribed for Fibromyalgia. Saying that it may not work well for that specific condition as it could very well be the completely wrong type of Analgesic for Fibromyalgia.

Stronger drugs such as Morphine are supposed to only be prescribed for Severe Pain and the majority of GP's prefer to limit the use to Cancer patients or to those with Terminal conditions. For someone dying of Cancer then I agree Dihydrocodeine would not be classed as a very strong drug. Saying that Morphine does not work at all for my condition even though it is supposed to be equivalent to 20/20 ths compared to the dose I take of Dihydrocodeine which is only 8/20's.

Each person is different and has different types of pain to cope with so one drug which may work very well for a Cancer does not do anything at for my pain. I would also think that the drug I take would not do a lot to help someone suffering with Fibromyalgia.

However Dihydrocodeine is still classed as a drug for Moderate to Severe pain and is a Class 2 Schedule Drug so it is my opinion that it is a strong analgesic to be using for long term use.

Tramadol dose of 50 mg is only equivalent 1/20 when compared to 10 mg of Oral Morphine. Or at a dose of 100 mg it would = 2/20 compared to 10 mg of Oral Morphine.

Dihydrocodeine is not a weak opioid although everything is obviously dose dependant and also bioavailabilty also has to be taken into account. Also every drug works in a different way for each individual and for each condition. It is very dependent on what condition you are suffering from, what type of pain you have, and how your body reacts to any drugs which you try.

Dihydrocodeine Indications: Moderate to Severe Pain -

evidence.nhs.uk/formulary/b...

Dihydrocodeine dose of 50 mg is only equivalent to 4/20's when compared to 10 mg of Oral Morphine. Morphine is usually regarded as being prescribed for severe pain. A 90 mg dose of Dihydrocodeine is equal to approx. 8/20's when compared to Oral Morphine.

(All the above fractions converted to 20th's for the ease of comparison.)

There are not many Equianalgesia Charts which include all three of the above mentioned drugs. This chart is widely accepted as being as accurate as any but I must stress that some charts state both Dihydrocodeine and Codeine as even stronger when compared to Morphine.

en.wikipedia.org/wiki/Equia...

According to "The Misuse of Drugs Act 1971 (Amendment) Order 2014" inserts Tramadol as a Class C Schedule 3 drug:

legislation.gov.uk/ukdsi/20...

According to "Controlled Drugs Regulations (Misuse of Drugs Regulations 2001)" Dihydrocodeine is included as a Schedule 2 Drug (higher control category than Tramadol) under paragraph 6. See page 19 & 20 of the following link:

legislation.gov.uk/uksi/200...

Don't be surprised if your GP tells you differently. This is because Tramadol has only recently been added as a Schedule 3 drug so they are more aware of the current classification having only recently received the update circular. Dihydrocodeine has remained in a higher Control Group but most GP's are not aware of this as it has remained as a Schedule 2 drug for many years.

The following explains how Controlled Drugs are classified - here is the original link:

gov.uk/government/publicati...

"Controlled drugs regulations (Misuse of Drugs Regulations 2001)

Drugs controlled under the 1971 Act are placed in 1 of 5 schedules to the Misuse of Drugs Regulations 2001 based on:

•an assessment of their medicinal or therapeutic usefulness and the need for legitimate access

•their potential harms when misused

The more harmful a drug can be when misused, the higher the schedule and the stronger the regime around its availability.

Schedule 1 to the 2001 regulations covers drugs that have no therapeutic value and are usually used mainly in research under a Home Office licence. Examples include cannabis, MDMA (‘ecstasy’) and lysergamide.

Schedule 2 to the 2001 regulations covers drugs that have therapeutic value, but are highly addictive. These are strictly controlled and subject to special requirements relating to their prescription, dispensing, recording and safe custody. Examples include potent opiods, such as diamorphine and morphine.

Schedule 3 covers drugs that have therapeutic value, but have slightly lighter control, special requirements relating to their prescription, dispensing, recording and safe custody (where applicable). Examples include temazepam, midazolam and buprenorphine, and methylphenobarbitone.

Schedule 4 is divided in two parts. Part 1- benzodiazepines (examples include bromazepam, diazepam (‘Valium’) and triazolam) and Part 2 anabolic and androgenic steroids (examples include prasterone, testosterone, nandrolone and bolandiol), which is subject to lighter regulation with no possession offence.

Schedule 5 covers weaker preparations of Schedule 2 drugs that present little risk of misuse and can be sold over the counter as a pharmacy medicine (without prescription). Examples include codeine, medicinal opium or morphine (in less than 0.2% concentration)."

If anyone finds any more accurate information I would very much appreciate if you would post the links. The above classifications were the latest classifications I could find on the Government UK web site.

Personally I would not recommend a drug such as Dihydrocodeine for Fibromyalgia type pain. In my opinion I don't really consider it as the correct type of pain killer to treat that type of pain. I am sure people who suffer with the condition could come forward and say which drugs helps them the most.

I hope this clarifies my previous post. I strongly appreciate any corrections to the above information.

Love and Hugs to you all.

from Twinkling Star Xxxx

[TwinklingStar]

The only reason GP's are reluctant to let people do this is when they are not fully knowledgeable regarding the strengths of different medications. They are not Specialists and do not understand the importance of the "Opioid Rotation Programme". This was something that all people on opioids were advised to do years ago. The current generation of GP's do not seem to have been trained to understand the importance of this which is why we have so many people who are unable to control their pain levels. It is a very sad unfortunate situation when people are taking medications which, not only don't control their pain, but are causing even more pain/side effects/withdrawal pains on top of the pain that their original condition caused.

Thank you for your comments Dan. All opinions are greatly appreciated.

Hugs and Love to you.

from Twinkling Star

Xxxx

[TwinklingStar]

Sorry my post is as usual long and very repetitive due to my Dyspraxia. I hope it is clear for people to understand.

oops! I forgot to include the link to the medical research papers relating to Opioid Rotation Programmes:

Short version/Abstract only:

ncbi.nlm.nih.gov/pubmed/197...

Long version:

ncbi.nlm.nih.gov/pmc/articl...

Love and Hugs

from Twinkling Star Xxxx

[jamel]

Dan9878. I am seeking help .if u can help please do.no more then that

[jamel]

Thank you for the theory.i will try when i get a chance doc

[TwinklingStar]

Yes Dan I also saw information that showed the drugs as being far stronger than the information in my post. I think I mentioned that there.

The problem is there is a lot of contradictory information out there. This is why I got the information from the Gov.UK web site.

Dihydrocodeine is not just a Schedule 2 drug in injection form. It is all drugs which are 100% Dihydrocodeine. In fact I cannot really be bothered to look it up again but there is a clause that states that anything that has less than a certain percentage of Dihydrocodeine (you know when it is mixed with another drug) like when the main ingredient is another drug and there is just a tiny amount of Dihydrocodeine.

However, if you have information from a reliable source proving to me that my information is inaccurate, of course, I would be extremely interested to have reference to it. I did my research on it for a specific reason but I can't research it forever. The above reliable sources showed it as a Schedule 2 drug and if you are saying it is only in injection form then that would normally be stated on the Gov.UK site. The links and information I have provided, except the Equianalgesia Chart, are specific copies of legislation.

I also looked on the BNF. The information they have seems to be way out of date but I am not sure. I look forward to your response. Like I said always happy to be shown accurate information and stand corrected if I am wrong.

Thanks Dan.

Hugs to you.

from Twinkling Star

PS In my own case they tried to make me change to Oral Morphine but knowing the drug does not do a thing and in fact makes my pain far worse I refused to change. I would not really want Morphine even if it did work for me as it is completely the wrong type of Drug for my genetic Disorder and it causes me massive problems which I why it causes increased pain. I would be tired ALL the time. I want a life. I need to be alert not sleepy all day - I am already fatigued and weak enough. That is what I like about Dihydrocodeine it has stimulant properties so it doesn't make me go blind, stop all my muscles from functioning, etc. and I am not forever having injuries caused by having drugs which relax my already too relaxed body! Every person is different but Morphine is of no use to be at all.