Antidepressants Safe To Use With Pots?

[Troy]

I have been refusing to take the antidepressant Amitriptyline which was prescribed to me by a doctor at the pain managment clinic for my detereorating joint problems as he belived that particular antidepressant also had pain relieveing properties.

I initially developed POTS due to a chemical exposure to recreational drugs in the first place and ironically I now have this severe chemical sensitivity and have not been able to tolerate any of the POTS medications and Ive been unable to take any painkiller due to the adverse reactions. I hear about others with POTS drinking cofee or alcohol and it amazes me that they are capable of that as I cant tolerate any sort of stimulant, smells, fumes, smoke, food additives, and many medications.

The last time I took an antidepressant since I developed POTS it totally ruined my sleep and further distrupted my symptoms causing me to overheat more so than usual. I even have adverse reactions to the changes in my bodies own brain chemicals and hormones that are released through out the day which are also responsible in inducing wake and sleep modes, digestion and temperature regulation.

So to someone who is alreday constantly severely overheating regardless of how cold it is outside and has issues with an unbalanced autonomic nervous system it makes no sense for me to use antidepressant that have the potential to further mess around with my seretonin, sleep, temperature, apetite and etc. when those factors are already distrupted and unbalanced enogh as they are.

I had an argument with the doctor who prescribed me the antidepressants trying to explain to him that ive already had bad responses to them in the past and why I couldnt take it but he refused to accept my reason and wanted me to try it.

Can anyone else tell me am I wrong to think that antidepressants can further distrupt and worsen my symptoms when I already have such a severe chemical sensitivity, overheating and experience adverse symptoms due to the chemicals changes in my brain?

[mrsdavidson8605]

Hi,

to a certain extent I can understand your frustration. I was pushed antidepressents for a long time, but for different reasons (doc thought I was depressed, didn't think I had POTS). I was totally against taking them for my own reasons that I won't go into. I ended up taking Effexor for a while, just to say "Okay I took it". It didn't help and I couldn't sleep for days on it.. now that's not to say that antidepressants don't help people with POTS.. i'm sure they do for some.. just not for me. If you feel that strongly against taking it, I would say get a second opinion before you do. It's ulitmately your choice if you want to take the drug or not. You're not going to know how it affects you until you take it. But it's okay to have different opinions than the doctor!!! they'll live through it.. haha just remember to always weigh the risks/benefits.. good luck

[MomtoGiuliana]

SSRI's (low dose) are believed to help about 50% of POTS patients with reduction in symptoms. You won't know until you try it if it will work for you. SSRI's do not work immediately and an early side-effect is autonomic dysfunction--so it can make your symptoms worse for a few weeks until it improves them. So if you try it you have to be patient! It was a miracle drug for me!

[flop]

Catherine is right - SSRIs do help POTS symptoms for a lot of us.

However Amitriptyline is not an SSRI, it is a tricyclic antidepressant. It is commonly used to treat pain, neuropathic pain and pain that disturbs sleep. It has a sedating effect.

My cardiologist wanted me to take an SSRI (I do and find it helpful) but wanted me to avoid tricyclic antidepressants as they can cause tachycardia and arrhythmias - I was told this before I developed full blown POTS (I had standing tachycardia but no real symptoms) so I'mnot sure if the avoid tricyclics was because of sinus tachycardia or more likely to be specific to me as I was being investigated for possible ventricular tachycardia?

SSRIs can also be useful in treating chronic pain - it may be worth asking your doctor if you could try an SSRI first and see what he says?

Flop

[Megan]

I'd suggest getting a second opinion, and maybe considering giving it a try, because the way most POTS people's bodies work, you never know what might actually help. By the way, one of the POTS things in general can be sensitivity to hormones, meds, chemicals, etc., so I'm sorry that your past experiences make this worse and that it is so frustrating.

Meg

[lloppyllama]

As Flop said: "However Amitriptyline is not an SSRI, it is a tricyclic antidepressant. It is commonly used to treat pain, neuropathic pain and pain that disturbs sleep. It has a sedating effect."

I take Nortriptyline...I dont know if it is different that amitriptyline or not...but I do know its a tricyclic antidepressant. I was put on it by the pain clinic here at Mayo, because at the time they thought that I had peripheral neuropathy...I dont though, we now know its POTS. They also gave it to me because I had pain disturbing my sleep. I was put on it about 2 years ago, and I still take it today. I have found it to be very helpful, not only with my pain but it does help sedate me to go to sleep. I also take Melatonin which is a chemical naturally in your body that helps make you fall asleep. It doesnt work for the majority of POTS patients, however it might be worth trying if you have a lot of sleep problems.

So I guess for you I would be nervous about trying a new drug, however considering Nortriptyline is NOT an SSRI, perhaps it would not have the same effect they have had on you in the past.

Good luck,

Mary

[Troy]

Thank you to everyone for sharing their experiences, it has helped me decide for now I would rather not take this particular antidepressant, its correct that Amitrypline is a tricylic not an SSRI and as Flop mentioned it has the potential to cause tachycardia and arrhythmias in some people (which I didnt know untill now).

Personally for me iregular heart beats and tachycardia was one of the primary reasons that made me avoid driving a car by myself and going places alone, I have now improved slightly that I can do those tasks again, so if i was to start experiencing heart symptoms again as a result of the tricylic antidepressant it would ruin every progress Ive made.

I think for now I will leave this medication as my last resort. Although I have had adverse reactions to all the different types of painkillers ive used so far such as oxycodone, codene, morphine, darvocet and tramadol, apparently during my knee surgery the anestheitist was able to use a painkiller called fentanly with me without any incedence, so ive been trying to convince doctors to try fentanyl on me but they keep refusing stating to me that its more suitable for severe pain in cancer patients. If I was allowed to use this I would only take a smaller amount enough to help with the pain. but it frustrates me that im being denied medication that has the potential to help without the adverse reactions.

[Sunfish]

hi endure -

i just thought i'd chime in with a bit of info on fentanyl to help you understand it's use/ indications a bit better. fentanyl is used intravenously, as you have already experienced, by anesthesiologists for both its sedative & pain-relieving properties, generally in combination with other meds. outside of the hospital/ OR setting, it is only used in patch form, and the patch is something that must be used continuously. b/c of the properties of the med, the way it's dosed/ administered, etc., it actually can't be used in someone as a "start-up" narcotic. in other words, the patch can only be prescribed/ started on someone who is already considered opiate tolerant; to be considered opiate tolerant you have to already be using a certain amount of another opiate medication on a regular basis (generally oxycodone, morphine, or dilaudid). so, while i understand your frustration at your lack of options for pain control and while it seems that your doctors did a pretty rotten job at explaining to you why fentanyl isn't an option, it actually isn't (at least based on what you've shared here). using it incorrectly, i.e. in someone such as yourself who isn't "opiate tolerant", can be very dangerous...even to the point of causing death (usually due to respiratory depression).

so...while your docs' explanation of fentanyl being used for severe pain in cancer patients isn't the whole story, the bottom line is the same. because of it's half-life (time it stays/ works in your body) & other properties, it's simply not a med that's can really be used outside of the hospital/ OR setting except for in the patch that is, in fact, designed for pretty severe/ constant pain that requires round-the-clock opiate meds (aka narcotics). while this obviously isn't "just" cancer patients, people with cancer are likely the population that fill this criteria most often. since i'm already rambling on far more than needed, i'll round out my "fentanyl 101" course by letting you know that the patches are usually changed every 72 hours (3 days). the first patch takes about 24 hours to reach its maximum effectiveness, wherein other meds are still needed, in decreasing amounts, during that time.

i was actually just started on the fentanyl patch myself a few weeks ago due to severe pain that we could no longer keep a handle on with "oral" meds (for me "oral" = via my J tube). i'm far from the typical dysautonomia patient though, so my pain issues are different than many & my docs likely have a different approach to treating me. when it comes to pain control/ management, i'm generally managed very much like a cancer patient might be. after several weeks of my GI pain keeping me from more than 2-3 hours of sleep at a time on a "good night" (b/c that's how long my current pain meds would take enough of the edge off for) my doc encouraged me to start the fentanyl patch. i knew it was a pretty high level pain med so was hesitant, but i trust my doc immensely & was pretty desparate for some pain relief, not to mention sleep, and b/c all of my "oral" meds need to be liquid or crushable (so that they can go into my tube), the fentanyl patch was literally my only option for a longer acting pain med.

for me the fentanyl patch has been great in that it definitely provides me more constant & consistant pain relief than i was otherwise getting, most notably during the night/ while i'm sleeping, but at other times as well. it does not eliminate my pain, nor did i ever expect it (or any other med) to do so, but it has made it manageable most of the time. i still have to take additional meds at times for breakthrough pain, but all in all i am functioning MUCH better.

so...the fentanyl patch definitely has a use & can be a great tool in pain management, but for the many reasons i described above it wouldn't be a safe option for you, at least not at this point in time. i obviously can't say a thing about any other aspect of your docs or the quality of their care/ communication, but regardless of any other issues, their refusal to give you fentanyl may be as simple as the fact that giving it to you would be downright dangerous.

hope this helps explain fentanyl a bit but feel free to let me know if you have any questions.

i do hope that you're able to find a better solution for some relief soon,

melissa

[Troy]

Hi Sunfish, I am very glad you have responded to me about fentanyl, because I do have some questions and I do not know anyone else whos tried it.

First of all I should mention that I am very cautious nowdays trialing new medications and I dread the effects of having another adverse reaction, I always take a fraction of the dose of any new medication my Dr prescribes just to be on the safe side, so with fentanyl if i was prescribed it I would not put myself in any risk as I would try it only in very small doses.

I am aware fentanyl comes in patches and it takes up to 12 hours for a patch to be absorbed so this is why I would never use patches because if I was to have an adverse reaction it would be difficult for my body to overcome the efects of something that has been building up in my system for that length of time. This is why the only fentanyl I would be willing to take is the 'Fentanyl Oral Lozenges".

The Fentanyl oral Lozenges are said to be absorbed very quickly last only 2 hours which is perfect for me as I would only use it in extreme painful circumstances as Im willing to tolerate the avarage level of chronic daily pain without medications. im also very cautious in the sense that I do not want to be addicted to any meds so i would try and minimise my use and take breaks in between using an addictive medication.

The question I wanted to ask you was... I have also read many times from various sources and as you have mentioned that fentanyl is only suitable for patients with an opiod tolerance, but I have not been able to understand why this is, so if I was to break a fentanyl lozenge into 10 parts and only consume 1/10 because I do not have an opiod tolerance and due to my cautious nature, then would that still be a problem for me to use in very small doses despite the lack of tolerance to opiods?

[deucykub]

Hi, Endure:

I also had an aversion to trying any (more) anti-depressants. Since being diagnosed with Fibromyalgia (before POTS) in 1992, my doctors had put me on all kinds of anti-depressants for pain control. The first one I tried was Elavil (Amitriptyline), and it didn't work well for me. A long list of tricylics and SSRIs followed with little to no success with the side-effects outweighing any benefits.

After experiencing severe withdrawal from Effexor (SNRI - selective seratonin reuptake inhibitor), I swore that I would never try an anti-depressant again.

I got really sick in 2005 and sought a new specialist, and he recommended Cymbalta (another SNRI) for the debilitating pain. I refused. After a month of the pain getting worse, I saw the doctor again, and he again recommended Cymbalta. The pain was so bad that it became worth the risk, so I gave it a shot.

Long story short, it worked! I am nearly pain free after 13 years of almost constant pain. The SNRI seems to help my POTS, too. When I am off it (e.g. for research), all of my symptoms are worse.

Rather than discount all anti-depressants, you might try negotiating a different option with your doctor if you are not comfortable with Amitriptyline...

Take care!

[flop]

Sorry, I'm going to chime in on the fentanyl subject too.

When a patient is started on opiate analgesics they would normally be given Morphine and (if opiate naieve) would start on 5mg twice daily (total 10mg per day).

The lowest dose of fentanyl patch available releases 25micrograms/hour. That is equivalent to 90mg of morphine per day. ie Sunfish is right - give that to someone who was not normally on large doses of opiates and it would most likely cause their breathing to stop.

The 25microgram/hr patch gives 600micrograms per day.

I hadn't heard of fentanyl lozenges so I have just looked them up. The lowest dose lozenge available is 200micrograms - which would be like taking 30mg of quick release morphine (six times the dose usually prescribed for someone new to strong opiates).

I know that we often break up tablets and take tiny doses ourselves but doctors aren't allowed to prescribe anything smaller than half a tablet (and only then if it has a score mark to break it in half). If a doctor wrote a prescription for the lozenges they couldn't put take 1/10 of a lozenge, if they just "had an agreement" with you then they could also get into trouble - if for some reason you accidentally took too much and came to harm that doctor could be prosecuted for manslaughter / murder besides loosing their licence to practice medicine.

Although it seems horribly unfair, it is all based on patient safety.

Looking for other options, can I ask what side-effects you had from the other pain meds that you have tried? I wonder if you tolerated the fentanyl ok because you were under anaesthetic at the time?

I hope you find something that works soon,

Flop

[pat57]

I appreciated the "fentanyl 101" course .

[ajw4790]

Hi!

I have to say I am a little confused... As far as the anti-depressants with POTS it is different with everyone. I think for your case Endure you will find that your response is apt to be even more different than the majority of the people on the board due to the mechanism of your condition and what and how the parts of your body are affected. For most of us amitriptyline would not be the first choice due to that it is a tricyclic and its side effects. I took it once and didn't like it, not to mean your response may not be entirely different. SSRI's and some SNRI's are more often what many patients with dysautonomia use. I take Zoloft (SSRI) and that works relatively well for me.

As for pain, this is where I get confused, what kind of pain is this exactly? How long has it been going on? What have you tried? What does not work for you due to side effects or doesn't help the symptoms? Why is narcotic pain meds the "go to" meds? If it is joint pain due to deteriation (osteoarthritis), why would you not want something that could be an anti-inflammatory etc? Have you tried prescription strength Ibuprofen, Naprosen, anti-seizure meds like Neurontin or Lyrica, or Celebrex? Then, there is many more choices as well in between. It sounds like opiate drugs are just not apt to be anything that you can tolerate, and is probably why they are trying something in a different direction. Is this muscle pain, joint pain, or neuropathic pain? Is it a constant pain or just at times? I am sure they ask you on the 0-10 scale rate your pain- how bad is your average pain? Is it all post-surgical? As in have you been diagnosed with Complex Regional Pain Syndrome etc?

I think that these pain syndromes often take a really good clinic and a lot of hard work and patience as you try a multitude of things and will not be a quick fix.

Have you tried other methods of pain reduction other than medication?

I hope you can find some relief!

[Troy]

Although it seems horribly unfair, it is all based on patient safety.

Looking for other options, can I ask what side-effects you had from the other pain meds that you have tried? I wonder if you tolerated the fentanyl ok because you were under anaesthetic at the time?

I hope you find something that works soon,

Flop

Hi Flop,

You are right, I can see that from the Dr's perspective it is a safety issue but from my perspective I feel like Im being denied a medication that has the potential to make life easier for me and if only I could tolerate the painkillers that were already trialed on me i could be living a much more comfortable life right now but im missing out on this all because it comes down to a matter of trust, understanding and communication between me and the Dr's.

I dont know if I tolerated fentanyl because I was under the anesthesia at the time but how am I supposed to know if fentanyl is an option for me unless im allowed to try it? if i have an adverse reaction to fentanyl then at least I can add that to the list of meds which I'm unable to take, and I belive it should be my right to know what i can and cant take especialy in the case of an emergency.

What if I had a car accident or a serious injury...shouldnt I be allowed to explore avenues on what Im able to take in such a case ? Even worse what if they gave me one of the painkillers thats already caused me adverse reactions while I was unconcious , it could end up being fatal. I feel like im being denied the right to figure out this important information about myself.

The adverse reactions Ive had towards the painkillers so far include difficulty and slowed breathing, feeling like I cant get enough oxygen, difficulty swallowing, feeling itchy all over, my throat feels tight and constricted, I have muscle spasms and involuntary twitching in my jaw, thighs and chest, feelings of confusion and just a miserable sick feeling and severe overheating, so bad that I end up going under a cold shower and need to stay in there for a long time that even when i think its safe to come out the heat sweeps over me again and i have to jump back in there and basically questioning if I will live through it.

[Troy]

Hi!

As for pain, this is where I get confused, what kind of pain is this exactly? How long has it been going on? What have you tried? What does not work for you due to side effects or doesn't help the symptoms? Why is narcotic pain meds the "go to" meds? If it is joint pain due to deteriation (osteoarthritis), why would you not want something that could be an anti-inflammatory etc?

I hope you can find some relief!

Hi Ajw,

Yes I have tried anti-inflammatory medication but every single one has irritated my stomach, even on my good days I already experience issues with my digestion and acid reflux and stomach pain but also regardless none of the anti-inflammatory meds helped with the pain. The pain is constant and severe and its in bothe ankles, both knees, hips, shoulders and neck. Its a solid ball of pain that radiates from the core of my joints outwards, it interrupts my sleep, I find it difficult walking, crouching and moving around and it has limited my activities greatly as if the POTS itself wasnt bad enough. Its aggrivated by physical activity no matter how light weight. There was no evidence of arthritis even though Ive had many tests. It is not post surgery pain as the pain started suddenly in all my joints and is of the same nature and sensation.

I have torn ligaments and cartlige in in all my joints from the waist down but no explanation as to why im experiencing these, the joint problems are still undiagnosed and of an unknown nature even though I have seen rheumatologists, physiotherapists, orthopedic surgeons and neurologists. Ive tried many avenues like hydrotherapy, physio, heat wave ultrasounds, strengthening excersises, massage therapy but none helped , Ive found that painkillers helped the most despite the adverse reaction I felt no pain when I have taken them but instead I was more pre-occupied with dealing with effects of the adverse reaction =)

[stellakitty]

STAY AWAY FROM FENTORA (the fetynal lozenge)....

I tryed it and I am opiod tolerent.... I was on it for headaches from my chiari and cranial cervical instability... I'd only take it when the headaches left me in pain to the point where I was barfing and on the edge of fainting from the intensity of the pain. I ended up addicted. First time EVER! I stole them from my mom's lock box and didn't even remember... It would knock me straight out for several hours (this is someone who goes to the ER and last time I got 3 mg of dilaudid and 75 mg of bendryl due to itchyness from painmeds... I was still coherent).

Then I tried the patch I worked up to 75 mcg/day... It did nothing to my pain. But I don't remember the entire time I was on the patch. I was trying to sleep, I couldn't stay awake... NO matter how much we lowered the dose. Finally my mom said give up the fetynal or I'm going to have to put you in a nursing home because I can't take care of you like this. I handed over the unused patches at my next PM visit...

Now I take roxinal (liquid morphine), 20 mg, prn, typically 3 x a day along with oxycodone and lunesta to try to get some sleep through the pain at night (which obviously isn't working tonight)....

Why are you so sure that you NEED fentora... From my experience it's a NASTY NASTY drug, to only be given out in the most dire of situations. I am not an addictive personality... You have mentioned above that your POTS started after experiementing with drugs (not that I hold that against you), if I can be hooked on fentora with no prior history of drug abuse do you think you can withstand her powers? I became suicidal while on fentora... At 18 I was contemplating ending my life over a STUPID narcotic... Do you want to live your life like that. I remember reading, after I had freed myself from that ****, that Fetynal is 100x more addictive than herion. 100x.

It's up to you and your docs if you want to take that chance for your pain. TO me nothing will ever be worth it agian. And I live with VERY severe pain. My pain levels have not been below a 7/10 in over seven years now.... But I'd rather live my life with that pain then ever take that drug agian.

I think you should exhaust ALL methods of pain managment (TENS unit, accupunctre, pain patches) before turning to opiates... I just don't understand why you want to go that route... I am living that way and I hate having to rely on my meds.... If you can stomach anti inflammitories they now have them in patch form, Flector PAtch, you stick it on the affected area... Also have you tried lidocaine patches.... There's way more out there than pain meds.

[Troy]

I am not an addictive personality... You have mentioned above that your POTS started after experiementing with drugs (not that I hold that against you), if I can be hooked on fentora with no prior history of drug abuse do you think you can withstand her powers?

Thanks for sharing your experience im sorry to hear it was so unfortunate but Im glad to hear that you have overcome your addiction, well done! I dont mean any disrespect but it is more likely for someone with a no abuse history to get addicted on a substance due to inexperience rather than someone like me who has suffered the ultimate consequence besides death as a result of using drugs. I have had first hand experience in the real damage drugs are capable of, it has ruined my life and im reminded of it everyday with the constant overheating and the vast amount of symptoms. I am stuck with a life long illness because of drugs, I have lost my abilty to work, to study, my social life, my friends, my independence, my partner, my goals and most importantly my health, if there is one person on this planet who realises the real danger about abusing and using drugs and addiction..its me! I would have been luckier to die instead of suffer a life long fate because of them.

I appreciate your good intentions but belive me there is no chance I could ever be addicted to any substance after what Ive been through. Even when I was trying out the painkillers the Dr's gave me which I had adverse reactions to, I was only taking 1 recomended dose only once every two weeks just so I avoided addiction, thats how cautious I am nowdays, I am also willing to put up with the daily pain just for the sake that I do not get addicted to painkillers but if I did take it it would strictly be on minimum usage and only when the pain gets unbearable and I trust and have faith in my own judgement that I can do this without gaining any tolerance.

[Megan]

Hi Endure, I don't want to sound disrespectful in any way, but I think that no matter what drug you're considering taking, you should consider that anything could happen, no matter your past history. So even if you and your dr's decide it's a good idea, I feel like going into it convinced you couldn't get addicted would be a bad idea. I've gotten addicted to medications that were supposedly "non-addictive" hallucinated on ones that "couldn't possibly cause that" and I think it's because of the POTS and the medication intolerance, or rather extreme sensitivity, I have. I know every person is different, and I know you've experienced a lot, but I would recommend to anyone that they are open minded that anything could happen...good or bad...on a new med. I've had a lot of crappy meds from dr's before I was diagnosed, and maybe that affected the way I react to meds. Anyway, I just worry that saying you're confident it couldn't happen could lead to a problem, even if you're extremely careful.

Meg

[flop]

Hi Endure,

I'm sorry to hear about the pain that you are having to live with - chronic pain is one of the most debilitating experiences and I can understand why you are desperate to obtain some relief from it. I think that this is something that you need to discuss with a chronic pain specialist - hopefully one of your doctors can refer you to a pain clinic?

how am I supposed to know if fentanyl is an option for me unless im allowed to try it?

I think that you have focused on fentanyl as the anaesthetist used it on you previously. I don't believe that your doctors are trying to deny you an analgesic option - more that they have failed to adequately explain why fentanyl is not an option. Due to its eceedingly fast onset and short duration it simply isn't used "when needed" it is a drug that you have to have in your system all the time. The fentanyl lozenges are only for people already taking fentanyl patches who need an extra dose for "break through pain". Even if you could get a small enough dose on prescription so that your doctor wasn't prosecuted for prescribing it to you, then taking it for 10 minutes pain relief and sedation every other week really doesn't seem to be a logical way of tackling chronic pain. Basically fentanyl was designed as a much stronger version of diamorphine (heroin) to be used in 2 situations 1) long term continuous use for patients already needing large daily quantities of morphine or 2) as a short acting analgesic in patients having surgery under general anaesthetic.

You have experienced it under situation 2) and tolerated it ok, however you do not describe your situation as being in line with situation 1).

I really think that you need to work with a pain specialist to investigate all options rather than expressing anger that a solution that you thought would help is not suitable for your situation. I know how frustrated you must feel, but your doctor is acting within accepted prescribing guidance and would be in serious trouble if he did prescribe fentanyl in such an unusual and unlicenced way.

I hope that you find an option that works for you (believe me there are lots out there, but you should discuss them with a pain clinic where they can give you the latest suggestions)

Flop

[deucykub]

Flop, you are such an insightful poster. I just wanted to second what you said, because I was thinking along similar lines.

Endure, with the severe pain you are experiencing, your best bet is to go to a pain management clinic. They are very familiar with pain management techniques: pharmaceutical, physical, and alternative. You absolutely deserve to live a pain free life!

(and as a former sufferer of chronic pain, you have my utmost empathy and support...)

[stellakitty]

I need to say this...

You can't break up the fetynal tablet... It is a tablet that you stick between your gum and cheek right above your molar and it fizzes away.... IT works in <10 mins... Any crushed tablets (and with the sucky packaging when you try to open the tabs you get alot of crushed tabs) you have to throw out. And once the tab is exposed to air, IT MUST be used....you see, your idea wouldn't work.

Flop... I used Fentora BEFORE i was on the patch. Most docs prescribe oxyodone for breakthrough pain...

BUt I am still having a hard time understanding WHY you want to start off on such a "big gun"... I know that you don't want to be in pain... As a fellower pain sufferer I can understand. Have you tried, Lidoderm? They are lidocaine patches that you stick where they hurt. Have you tried Flector Patches? They are patches and the anti inflamitory meds are absorbed through the skin... You wouldn't have to worry about your tummy. TENS, Inferential stim? Both pain devices that are good for nerve pains... There are so many more options out there other than FETYNAL! Which is a scary drug, trust me... I wish I NEVER took it! I lost out on 6 months of my exsistance... When I say that I mean, I don't remember a thing... I'm already house and bedbound, but I don't remember seeing my friends before they left for college, or my 18th birthday.... I missed out on a lot... Just because you have a hx of drug abuse doesn't make you imune to being addicted to feyt... IT's way more addictive than herion... You can look it up if you don't believ me.

[Troy]

Thank you everyone, I havent tried the above options youve mention stellakitty, mainly cause Ive been so cautious in trying new medications and I was only stuck on the idea of fentanyl because the aneshteitist said it was used in my surgery without complications but I understand that alone isnt enough to validate its use in me and I do belive you that it is more addictive than heroin.

I will consider the other medications you have suggested as long as it gives me the same standard of pain relief I experinced from painkillers which allowed me to get on with my day but hopefully without the adverse reactions.

Flop I also second Deucykub's comment that you are very insightful and most likely right in what your saying so I will try and be patient for other alternatives but in regards to tackling chronic pain I am willing to endure most of it by keeping as busy as I can at home and with activities and if I can find an alternative medication that relives most of the pain then thats a bonus for me but for times in my life where I need to go out to family events and other functions which require me to walk around then I would be quite content with a faster acting and shorter lasting relief like fentanyl but I guess I have to stop thinking that way.

[flop]

I'm glad that you realise why your doctors didn't agree with your ideas (just a pity they didn't explain clearly to you to start with!!). It must be really frustrating feeling that your doctors aren't listening / understanding your pain.

I am fortunate that at the moment chronic pain isn't a huge problem for me - my EDS dose cause a lot of pain but it is musculoskeletal pain and I have weekly sessions with a sports massage therapist. He does work to reduce muscular tension and relieve any areas of spasm, he also does myofascial release and other things to switch off pain trigger points. The other benefit is he has managed through massage, stretches and specific exercises to help me correct my scoliosis.

My experience of very severe relentless pain was many years ago when I was a student. I hurt my knee doing sports and unfortunately didn't get treatment when I should have done. By the time I had waited for it to heal itself then gone through my doctor and 3 different sorts of physiotherapy I was in such a state that I couldn't stand on the bad leg at all. I was taking maximum doses of co-codamol (totalled paracetamol/acetaminophen 4g + Codeine 240mg every day). That would just take the edge off the pain but not make me comfortable. Even after surgery (9 months later) to sort out the torn cartilage in my knee I was still in agony!

The orthopaedic surgeon suggested that the pain was coming from elsewhere (i.e. in my mind) - I got so angry and upset, it was my knee that hurt, I wasn't loopy!! (or so I thought). I saw my own doctor and he put me on Dothiepin (a tricyclic anti depressant) - the effect was amazing, as it had a sedative effect I was suddenly sleeping properly for the first time in nearly a year, having a decent quality of sleep allowed me to function better during the day and my appetite came back, my pain decreased to a level where the painkillers would let me be pain free and within about 6 weeks I had my life back and got rid of my crutches. It still took a lot of physio to get the movement and strength back in my leg but without the Dothiepin I don't think I could have done it.

Looking back afterwards and talking to friends it had apparently been obvious to them that I was depressed. They had noticed the changes in me that I couldn't see for myself. Essentially the injury and pain were the root cause of the problem, leading to lack of sleep and increased perception of pain. It is a vicious cycle that is hard to break without help:

pain -> poor sleep -> increased perception of pain -> worse sleep -> increased pain -> worse sleep -> even more pain!!

For me a tricyclic antidepressant helped to break the cycle, but there are other ways of getting off this downward spiral and getting in control of the pain. That is what pain clinics specialise in - looking at the whole person and tackling all the issues that come with pain. I'm sure you've realised that severe pain ruins lots of aspects of your life so it makes sense that you have to look at sleep patterns, diet and other factors to draw up a pain management program that is tailored to your needs. I hope you manage to get a referral soon, I look forward to hearing what methods are suggested for you.

Take care,

Flop