Hi everyone, I just needed to share what has been happening, any ideas are appreciated at this point.
To cut a long story short I have endo but also chronic pelvic pain and neuropathic pain affecting my leg and also my mobility. I have been taking tramadol to manage my pain for 18 months, I have a manic 5 year old to look after also!
I was feeling strange last week, palpitations etc so went to GP on Friday, he took my blood pressure and said it was high and caused by tramadol. He told me to reduce to 1 a day over the weekend and go back in on Monday, said I was damaging my body. When I asked what to do for the pain in the meantime he said "do you want to have a stroke?" Obviously this scared me to death! I knew I would be in agony as I take them for a reason not just because I fancy it! I rang the surgery back and asked to speak to my usual GP and explained that I didn't know how I would manage with virtually no pain meds. I was told he was not available.
So I dropped them right down, obviously ended up in lots of pain and very anxious and ended up ringing the out of hours GP. He said I had no choice but to take them, just take absolute minimum and relax, the stress is doing more harm!
So here in am in bed, taking the bare minimum but can't leave the house, wondering how the hell I am going to do the school run in the morning and half term starts on Thursday.
Some gp's seem to have no concept of dealing with chronic pain. I am going to the pain clinic who prescribed pregablin but I had to stop because of migraines. I resent being treated like some kind of junkie because I knew I couldn't manage the pain without taking the tramadol this is different to not being able to manage without something when there is no reason for taking it.
I am really stressed after also last Monday seeing a gynae and deciding on a hysterectomy because my specialist endo gynae is off sick for the foreseeable future and I am in the midlands with no endo centre anywhere near.
i really need a pain specialist who knows about chronic pelvic pain. I now have 2 problems to deal with, the endo and the chronic pain. The endo is under control with prostap, thank god.
People see me walking down the street and think I must be fine, if only they knew I am only walking because of large amounts of meds!
It takes all of our strength just to get through the day sometimes I think we deserve a pat on the back for not falling apart, people do over far less,
Hope you are all having a pain free day xx
Does anyone have any experience of neuropathic pain?
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Eggcustard
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i know excactly wat your saying bout meds...i dont have a prob with blood pressure...but i have endo and chronic pelvic pain..and i have 3 kids so i know how you must be feeling..like theyve taken your life line...i have just met my pain consultant and he was amazing..i start accupuncture in march..if that doesnt help the im on either pregablin or gabapentin..wat about replacing meds with codeine...do u take anatriptalin?..there is a few other pain meds that should of been given to u..i also suffer with migraines..thought i was going to die on friday...i never take tramadol wen a migraine comes..it makes them angry..lol..and with the junkie thing its not my gp i have problems with its the recepcionist...i have to fight them for my meds...lol...my new consultant is dr fahrid...at parkhill hospital ,doncaster...i think i love him...lol...keep your chin as you said we cant do owt else....xxxxxxx
Thanks for the reply, I have been back to my usual GP today who says it is anxiety rather than blood pressure so all a big panic over nothing. Needless to say I won't be going to that GP again. I am starting amatriptaline (Sorry about the spelling) tonight and then will taper off tramadol if it works.
Doesn't sound like the GP gave you any practical or helpful advise - could be the pain causing your blood pressure to be high, I wouldn't go and see them again! Go and see someone else, explain everything as you have done on here. Be strong, be persistent and look after yourself x
Thanks for the reply, I have been back to my usual GP today who says it is anxiety rather than blood pressure so all a big panic over nothing. Needless to say I won't be going to that GP again. I am starting amatriptaline (Sorry about the spelling) tonight and then will taper off tramadol if it works x
Try Amytriptilyne.. but does not agree with everyone and can have a sedative affect..i am on Duloxetine or treatment neuralgic pain ...so keep in mind ! Also other painkilling meds you can use and things like propanalol in small doses for anxiety...stick to that GP! jj
Hi, I don't know about pain meds causing an increase in blood pressure but I do know that when I was in severe pain from my rheumatoid arthritis (rather than endo pain) my blood pressure shot up. And my rheumy consultant got rather cross with my GP and the various nurses who were worried about the blood pressure and were faffing around with endless repeat tests - he just said the pain I was in would increase my blood pressure and not to worry in the short term. Take care.
Hi, I can believe that as pain causes stress and stress makes pain feel worse. The our of hours GP said the same about my blood pressure being higher due to pain. I have been back to my usual GP today who says it is anxiety rather than blood pressure so all a big panic over nothing. Needless to say I won't be going to that GP again. I am starting amatriptaline (Sorry about the spelling) tonight and then will taper off tramadol if it works.Wish me luck X
I feel for you. It is so hard to try and manage the awful pain of this condition. Mine is now thought to be adhesions, relating to endo and it fluctuates from always having some level of pain to absolute agony. I sit at night, holding my right side which pinches and pulls and makes my whole body ache and down my leg, also affecting my bowels and bladder every night when they fill up during the night causes nerve pain and poor sleep. I take Co Drydamol and stool softeners together as they can constipate badly. Codeine only takes the edge off but better than nothing. I have tried taking half an Amitryptaline with half a sleep tab to get through the night, which again doesn't eliminate the pain completely but might give me an extra hour of sleep (much needed). I haven't yet tried Tramadol as I was worried it might affect my driving the next day. My Gp suggested trying 4/5 hours on a couple of different pain meds so overall you get some benefits from each but not of course at the same time. Occasionally, I take an Ibrofen 400mg but not too often as they can cause stomach ulcers and I also have Diverculitis and a Hiatus Hernia. I have yet to find anything that removes the pain completely it is that bad!
I understand being in constant pain as I've been in that situation myself for at least the last 7 years, maybe more. I'm on a very high dose of morphine as its crept up over the years - no painkiller completely takes the pain away but it is possible to make it more bearable.
With drugs like tramadol, they can make you drowsy but your body does adjust fairly quickly to them. If you need to drive to work, is there someone who could drive you for a week or two while you adjust.
I've been under some amazing pain specialists and through lots of pain management courses etc but I've never heard of taking a different painkiller every 4/5 hours. However, there are painkillers you can take together.
You can take paracetamol and an anti-inflammatory together - if your stomach needs protection, there is a drug you can get called arthrotec which is a stronger anti-inflammatory called diclofenac (aka voltarol) plus another drug which protects your stomach. However, it must not be taken of you're pregnant or trying to get pregnant - you have to use contraception.
On top of this, you can also take an opiod - you're currently taking dihydracodeine as part of your co-dydramol. The alternatives are tramadol, morphine, then there's rarer ones like fentanyl and OxyContin.
Lots of doctors seem to prescribe opioids in the four hourly version but the most effective way to take them is to take a slow release version of something like tramadol or morphine, then take the fast acting version as needed for breakthrough pain. This causes less drowsiness and more consistent pain relief - if you keep on top of the pain in this way, often you end up needing a lower dose overall to manage the pain.
On top of that, there's anti-depressants like amitryptilene and epilepsy treatments like gabapentin and pregabalin that all are prescribed for neuropathic pain. They can cause quite a few side effects like fatigue etc but for many people, these improve dramatically once you adjust to them.
I would speak to your doctor about this and see if you can get a better drug regimen in place - there's lots you can try and I'm sure something will work for you.
I forgot to mention this as it was the most evil drug I've ever tried - I felt so terrible whilst I was taking it that I cried most of the time. I had migraines, vomiting, sedation, dizziness - it was hideous for me. Obviously not everyone reacts that way so it's worth a go - i think I'd tried to block it out!
Hi, thanks for the reply and I'm sorry you are suffering badly too. There's some good advice on this page and I'm sure others who have been dealing with it for longer are better placed to give advice. I have been back to my usual GP today who says it is anxiety rather than blood pressure so all a big panic over nothing. I am starting amatriptaline (Sorry about the spelling) tonight and then will taper off tramadol if it works. It seems to be trial and error, just a shame some GP's panic people for no reason x
Like Pands my blood pressure shot up whilst I was experiencing the headache from h*ll two years ago which <with other symptoms> led to me being admitted to hospital. The BP continued to be high despite me having pain relief on the ward. When I discharged I was started on BP meds and have continued ever since, alongside painkillers for endo. If yours continues to be high it will mean taking another tablet but its not so bad if it helps reduce your readings and risk of other health issues.
Have you considred taking amitriptyline for neuropathic pain? This is one of the tablets I take and have found it the best at keeping my pain at bay. And believe me I have tried a lot
Hope you're feeling better today and your regular GP has put your mind at rest as you must have had an awful weekend with not knowing what meds would be safest to take to see you through until today.
I was also going to suggest amitriptylene if you haven't already tried it - it's an anti depressant, and there's a similar drug called Duloxetine you could also try. I can't take either as I have ME and they made it much worse, but they can really help people.
I'm in a similar situation to you - I've been on morphine for 9 years and the dose became extremely high (over 1,000mg a day). I was under an excellent pain specialist in London and she helped me to reduce - I'm now on 600mg a day. I then had to move and my current GP and clueless pain consultant want to me to reduce and stop the morphine within 6 months. My London pain specialist said it would take me years to get down to a low dose and I'd probably never be able to stop completely. The new consultant has put me back on pregabalin which I stopped before because it made my fatigue worse - but instead of 25mg, he started me on 75mg and increasing each day up to 300mg in 4 days. I'm now on 150mg and feel like a zombie. I seem drunk all the time and getting awful headaches. My current GP told me to reduce my morphine dose by a quarter straight away - i would be in hospital. So I know what it's like when doctors who dont understand chronic pain or the meds required try to mess around with things.
Having said that, longterm tramadol use does have some difficult side effects - it caused me to develop gallstones which led to a badly infected gallbladder and I was very sick. I also had similar issues to what you described. They've put me back on a low dose to help me reduce the morphine and I'm pretty reluctant to take it.
If you're having problems with it, I think they should try you on morphine or something like fentanyl instead. In my experience, morphine has less of these side effects as although they are similar drugs, they are created differently. They could give you slow release morphine every 12 hours and oramorph through breakthrough pain - this is a lot more effective than just taking short acting pain relief every 4 hours which I assume is what you're doing now. Overall this can mean you need less pain relief, and you can adjust the oramorph dose in tiny increments rather than having to take 50mg or 100mg.
If your current GP won't prescribe this to you or is happy to leave you without any pain relief, is there someone else in the practice you can see? Is the doctor who saw you out of hours from your practice? If not, I would suggest finding another practice but you'd need to make sure you can be seen ASAP with whoever you register with. Also make sure you have proof of your current meds like a repeat prescription slip or similar otherwise they may not believe you.
Finally, I'm not sure whereabouts you are in the midlands but there are amazing endo specialists at the John Radcliffe in Oxford which you could see - they also have a lady called Jane Moore who is a gynae but specialists in chronic pelvic pain rather than surgical treatment. I'm sure I've also heard ladies talking about a specialist in Birmingham but I'm not sure who - maybe you could post here and ask if anyone has a specialist in your area?
Take care and kept pushing to get the pain relief you need.
I did a very quick Google search on Tramadol and its effects on blood pressure. It mostly came up that it was more likely to cause low blood pressure than high blood pressure, but high blood pressure has been reported in some cases. I had a similar problem with Zoladex; my blood pressure shot up when I was last taking it but because it wasn't listed as a side effect the doctor didn't think it could be that causing the problem. As soon as I stopped it, my blood pressure came back down.
Obviously I'm not a doctor, but I would have thought it was more dangerous to tell you to stop taking them just like that. And if they work for you - and again I'm not a doctor - surely it would be better for them to find a way to regulate your blood pressure that works alongside the Tramadol rather than consign you to a life of pain...
I know what you mean about being treated like a junkie. The only thing that touches my pain is pethidine and my GP hated prescribing it to me because of the tolerance/dependance issues. I was fed up with fighting with her so said I'd try something else instead and she prescribed Tramadol, despite the fact I'd had it before and it had made me really ill. But what really shocked me was that she told me to take it four times a day, whether I was in pain or not, as this would keep the pain at bay all of the time. So she wasn't happy for me to take pethidine as and when, but quite happy to pump me full of Tramadol even when I didn't need it. I took it, it made me really ill, and we went back to pethidine...
I know they have a massive responsibility on their shoulders but I do wish they would sometimes just accept that living with our bodies teaches us so much more than any amount of book learning can teach them
There are some really unhelpful GP's out there..im about to move practice as moved house and really worried about getting a good GP again. Like your idea of repeat prescription but even better get a letter. Pain is your experience so you know how much you need..i vary painkillers(Tramadol 1 or 2 /day and/co -deine depending on pain...like the idea of slow release..will ask GP jj
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jj
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