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Please help and advise - I am desperate
I have been very ill for over 3 years. It started with horrendous dental and TMJ problems and I had to attend the dental hospital for severe pain, which never went away. I then went abroad on holiday and came back and had acute chest and stomach pains. I could not breathe and felt very sick and ill. I was in and out of the emergency dept of the hospital and had to have oxygen and pain killers. They then discovered massive internal bleeding and I had 2 blood transfusions. I was still very ill afterwards with chest and stomach pains. This continued and I kept collpasing and could not breathe. I was in and out of hospital and had lots of tests. I was diagnosed with DVT and emboli in my lungs. I had to take warfarin for over a year. However I also caught flu and lost my sense of taste completely and developed tinnitus. I became extremely tired, my muscles and bones ached and I had chronic migrianes. I have been to many doctors and no one has an explanation as to why I have been riddled with pain. I have a back problem and severe pains in my legs (MRI scan showed degnerative discs and joint facets) and my consultant has diagnosed neuropathic pain being the reason for the severe leg pains. My position now is as follows: I have had a range of problems over 3 years - 2006 and lots of tests and scans. It started with dental pain, TMJ, chest pain and stomach pain, acid reflux. (I have had migraines for over 20 years.) 3 months later, I had internal haamorraging and had 2 blood transfusions. I continued with chest pains, stomach pains, chronic migraines, chronic fatigue. I had root canal treatment in May 2006. I was diagnosed with DVT and emboli in th elung in June 2006 and put on warfarin for 1 year or so. I then got flu in mid 2006, and lost my sense of taste completely (my taste never came back) and developed tinnitus. My migraines got worse and I became extremely tired and ill and could not move. I was diagnosed as having chronic fatigue. In 2007 and 2008, I continued to have chest pains and stomach pains and given various medication but these pains continue intermittently. To date, I am in severe pain - particularly legs and back, I also have chronic fatigue, chronic migraines, stomach pains, acid reflux, no energy, complete loss of taste, tinnitus in right ear, neuropathic pain (that is accordingly to my consultant) and feel very nauceous and sick in general. I have monthly B12 injections (but I do not think these are helping). My medication includes morphine, lyrica/pregablain, omeprazole, ritzatriptan and throxine. I take co10 vitamins but nothing seems to work. Please, please can anyone help and advise me. My life has come to a halt and I need to get better. I used to be a lawyer, working 16 hours a day. I have not worked for 3 years. I am desperate to get better and return to work.
It's tough when a series of problems and events conspire to bring life to a shuddering halt. However, it might be possible to tease out which problems are coincidental and treatable, from those that are more directly connected to each other.
For instance, you mention acid reflux, something which is relatively common in the 40+ age group. Depending upon when it started and what symptoms also began shortly afterwards, there are several possible reasons for it: 1) chronic stress, 2) alcohol consumption being too high too frequently (often this is a reaction to stressful environments), 3) heliobacter pylori infection, which may also mean ulceration of the stomach, 4) peptic ulcer and/or duodenal ulcer, 5) weight, 6) pregnancy, and 7) incompetent sphyncter muscle at top end of stomach - sometimes this is from chronic consumption of alcohol, sometimes it's inherited, sometimes medication, and sometimes from hiatus hernia; 8) everything else that's left over.
The omeprazole is for the acid reflux, and it can really only reduce the acidity of the reflux. Sometimes that is enough. If the reflux is really bad you may have bouts of waking up in order to cough acidic fluid out of the lungs. If it is that bad you may have a wheeze and feel pretty much like death warmed up, partly due to chronic tiredness. Pneumonia is a small but definite risk if you are regularly suffering from this. There are operations that may assist in this case - a Nissan fundoplication is one such example.
Another factor might be the use of pregabalin. I too have used it - several times now, having just resumed on 450mg/day - and in the initial couple of months on the higher doses (around 300mg to 600mg/day) I had bouts of acidic reflux making it to the lungs while asleep. This rather nasty side effect did stop (thankfully). Presumably it is because pregabalin causes some interference with the stomach sphyncter and with that doodad flap that shuts of the lungs when swallowing saliva, food, etc.
Only you will know about your alcohol habits, weight and fitness levels, but a 16 hour day routine wouldn't have left much time for fitness, and certainly wouldn't have helped with regards to thrombosis formation in the legs (too much sitting in a static position). Furthermore, if this work life was causing you significant longterm stress - which you have alluded to - then the crushing chest pain and stomach pains may have been panic attacks. A panic attack in full fury is often described as feeling like a heart attack, and in fact people do end up at the emergency ward thinking it is a heart attack. Ruling out an actual heart attack, or angina as another example, requires expert examination.
Were you ever given an explanation as to where and why you had internal haemorhaging, and whether it was the cause of the chest or stomach pains (or just coincidental in time)?
For instance, you mention acid reflux, something which is relatively common in the 40+ age group. Depending upon when it started and what symptoms also began shortly afterwards, there are several possible reasons for it: 1) chronic stress, 2) alcohol consumption being too high too frequently (often this is a reaction to stressful environments), 3) heliobacter pylori infection, which may also mean ulceration of the stomach, 4) peptic ulcer and/or duodenal ulcer, 5) weight, 6) pregnancy, and 7) incompetent sphyncter muscle at top end of stomach - sometimes this is from chronic consumption of alcohol, sometimes it's inherited, sometimes medication, and sometimes from hiatus hernia; 8) everything else that's left over.
The omeprazole is for the acid reflux, and it can really only reduce the acidity of the reflux. Sometimes that is enough. If the reflux is really bad you may have bouts of waking up in order to cough acidic fluid out of the lungs. If it is that bad you may have a wheeze and feel pretty much like death warmed up, partly due to chronic tiredness. Pneumonia is a small but definite risk if you are regularly suffering from this. There are operations that may assist in this case - a Nissan fundoplication is one such example.
Another factor might be the use of pregabalin. I too have used it - several times now, having just resumed on 450mg/day - and in the initial couple of months on the higher doses (around 300mg to 600mg/day) I had bouts of acidic reflux making it to the lungs while asleep. This rather nasty side effect did stop (thankfully). Presumably it is because pregabalin causes some interference with the stomach sphyncter and with that doodad flap that shuts of the lungs when swallowing saliva, food, etc.
Only you will know about your alcohol habits, weight and fitness levels, but a 16 hour day routine wouldn't have left much time for fitness, and certainly wouldn't have helped with regards to thrombosis formation in the legs (too much sitting in a static position). Furthermore, if this work life was causing you significant longterm stress - which you have alluded to - then the crushing chest pain and stomach pains may have been panic attacks. A panic attack in full fury is often described as feeling like a heart attack, and in fact people do end up at the emergency ward thinking it is a heart attack. Ruling out an actual heart attack, or angina as another example, requires expert examination.
Were you ever given an explanation as to where and why you had internal haemorhaging, and whether it was the cause of the chest or stomach pains (or just coincidental in time)?
Thank you for replying to my email. I wanted to add that I have taken vitamins and mineral pills, plus Q10 enzyme. Am afraid nothing seems to help. I have been on lyrica now for 3 months - the effect is to 'zonk' me out most of the time, I am dizzy, sick and sleepy. Sometimes, the pain eases in my legs a bit but it comes back quickly, when the pills wear off. I just do not know what to do. I am getting so annoyed because it is over 3 years with all these symptoms (see my post - 14 July). I am in the Uk and quite frankly the treatment and care is appalling whether it is NHS (government) or private. All the doctors do here is to grab your money and prescribe pills - if you do not seem to respond they put it down to you either making all your symptoms up(!!!) or off-loading you on to another doctor, or just ignoring you. I am at a complete loss. I know I sound desperate and frustrated - I am. As I said, I have worked an a lawyer in London doing 16 hours a day for over 10 years - the 'over burn' may have been a cause of my health problems but surely there should be some 'remedy' or means to treat the health problems rather than masking them with pills, and more pills. I am grateful for anyone reading this and giving me any advice and support. Thank you all.
I feel your pain and frustration, I too have been in your condition. I think once we get fibro everything else about us becomes sensitive to the extreme. Some of the medications made me feel worse. Especially Cymbalta. I gained 40 pounds, had severe gastric problems, almost lost my mind. Look carefully at your meds and try to switch or aleviate one or some. I still fell bad mostly but, not like I did. And, I lost the extra weight easy when I got off the Cymbalta. I am afraid to take any new fibro meds anymore. What you say is correct they just mask the symptoms some and sometimes make them worse
Sandee1818/Tuck, thank you for replying to me. I appreciate your advice. Yes, there are pain man doctors in the UK but they do not seem to have a good reputation (sorry to say this)! I just do not want to take more and more medication - because it seems to me it is masking the peoblems and not curing! However you are right about fibromyalgia - because in the UK they use this term symonymously with chronic fatigue. I just do not know how to get to the root of the problems and pains. I am sure my various health problems are the result of bad luck (and burn out as I worked 16 hrs a day!) but I feel that after 3 years of pain and agony I need a fresh approach. I have tried alternative meds - eg acupuncuture, herbal medication, spritual healing! Though, nothing helps. Any further suggestions, please. Thank you so much for reading this.
Hello Alexi,
Welcome to the Pain Management Forum. You are young to have so many different causes of pain and I am sorry that life has dealt you such a lousy hand. I am glad that you have found us at MedHelp.
Chronic Fatigue Syndrome is often used interchangeably by some physicians with Fibromyalgia therefore when you add that to your other pain causing conditions I am sure you are in miserable pain.
I apologize for my ignorance but does the United Kingdom have Pain Management Physicians (PMP)? And if they do are you seeing one? I know there are some great PMP that can regulate your medications, some times it requires trial and error, to improve your level of comfort and help you function more normally. Unfortunately sometimes there are no easy fixes for CP and we just have to deal wit it the best we can through lifestyle changes and medications.
You should have less pain than you describe. Possibly you require different opiates or different combinations of medications than the ones you are currently prescribed. I would certainly address this with your current physician. If he or she is not willing to begin some experiments with meds than you might want to consider changing physicians. regardless if you see a PCP or a PMP.
Please keep in touch with us. We are a supportive community and most of our members can relate to one degree or another with your pain and medical conditions. Others will respond with their suggestions. It took me years to find the right PCP that not only diagnosed my painful condition she also treats it. I will look forward to your updates. Please know that you are not in this alone.
Take care,
Tuck
Welcome to the Pain Management Forum. You are young to have so many different causes of pain and I am sorry that life has dealt you such a lousy hand. I am glad that you have found us at MedHelp.
Chronic Fatigue Syndrome is often used interchangeably by some physicians with Fibromyalgia therefore when you add that to your other pain causing conditions I am sure you are in miserable pain.
I apologize for my ignorance but does the United Kingdom have Pain Management Physicians (PMP)? And if they do are you seeing one? I know there are some great PMP that can regulate your medications, some times it requires trial and error, to improve your level of comfort and help you function more normally. Unfortunately sometimes there are no easy fixes for CP and we just have to deal wit it the best we can through lifestyle changes and medications.
You should have less pain than you describe. Possibly you require different opiates or different combinations of medications than the ones you are currently prescribed. I would certainly address this with your current physician. If he or she is not willing to begin some experiments with meds than you might want to consider changing physicians. regardless if you see a PCP or a PMP.
Please keep in touch with us. We are a supportive community and most of our members can relate to one degree or another with your pain and medical conditions. Others will respond with their suggestions. It took me years to find the right PCP that not only diagnosed my painful condition she also treats it. I will look forward to your updates. Please know that you are not in this alone.
Take care,
Tuck
Hi,
I am so sorry you have have had so much pain in your life. I can't say I have any idea what could be the problem. All these symptoms could be unrelated and this may be throwing the doctors off by trying to relate them. have you ever been diagnosed with fibromyalgia. This will cause some of the pain you describe, my doctor once told me that all pains can be directly related to fybro if you have it. When your in so much pain the body tends to try and shut down in a way. I used to have horrible stomach pain and still do when my pain levels are way up there and I was told this is related to the chronic pain. The stress the body is carrying from the pain levels interacts with your stomach.
Now every doctor has their own opinions as to what may or may not cause pain but one thing I have found to be true is that when one is in extreme pain the body just does not work as it should.
I would suggest seeing a pain management doctor as well as a pain phycoligist. I know you may be saying well I am not crazy, I know this but they can help you deal with your pain and it helps just to talk to someone who does not know you personally and it helps stress therefore helping your pain levels. I did not want to go see one but my PM made me and I was so glad he did. I learned alot about myself and my pain levels and how to deal with stress better. It will help if you try.
A pain specialist will be able to offer you more options than a regular MD can. Pain management doctors deal with chronic pain daily and can have a better understanding of whats going on with you.
If you need help locating one ask your doctor to refer you or if you like I will help you try and locate one in your area.
Hang in there there is hope ahead. I know it is frustrating to say the least, your an attorney who has spent a good part of your life learning the law and now are unable to practice. I understand your anger and frustration but there is help out there you just have to be diligent and do not give up.
I do hope you will keep us updated. We would love to have you here as part of our wonderful community. Support is very important.
I am so sorry you have have had so much pain in your life. I can't say I have any idea what could be the problem. All these symptoms could be unrelated and this may be throwing the doctors off by trying to relate them. have you ever been diagnosed with fibromyalgia. This will cause some of the pain you describe, my doctor once told me that all pains can be directly related to fybro if you have it. When your in so much pain the body tends to try and shut down in a way. I used to have horrible stomach pain and still do when my pain levels are way up there and I was told this is related to the chronic pain. The stress the body is carrying from the pain levels interacts with your stomach.
Now every doctor has their own opinions as to what may or may not cause pain but one thing I have found to be true is that when one is in extreme pain the body just does not work as it should.
I would suggest seeing a pain management doctor as well as a pain phycoligist. I know you may be saying well I am not crazy, I know this but they can help you deal with your pain and it helps just to talk to someone who does not know you personally and it helps stress therefore helping your pain levels. I did not want to go see one but my PM made me and I was so glad he did. I learned alot about myself and my pain levels and how to deal with stress better. It will help if you try.
A pain specialist will be able to offer you more options than a regular MD can. Pain management doctors deal with chronic pain daily and can have a better understanding of whats going on with you.
If you need help locating one ask your doctor to refer you or if you like I will help you try and locate one in your area.
Hang in there there is hope ahead. I know it is frustrating to say the least, your an attorney who has spent a good part of your life learning the law and now are unable to practice. I understand your anger and frustration but there is help out there you just have to be diligent and do not give up.
I do hope you will keep us updated. We would love to have you here as part of our wonderful community. Support is very important.
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