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Frustrated with lack of pain management
I am a 49 yr. old single woman who has suffered with chronic pain for 18 yrs. I was diagnosed with Fibromyalgia/Myofascial Pain Disorder in 1995 by a top Dr. in Boston after a car accident. My pain began in my mid-back and cervical spine (C5-6). I also taught aerobic and did some pretty major over-use injuries to my spine. I have also been treated for depression/PTSD through therapy and medication since I was in my early 30's. After seeking help at a pain clinic and getting no relief, I sought a surgical opinion and found that I had a moderate to severe bulging disc at C6 and mild bulging disc at C5. I chose to try every therapy possible and while doing so, I began having problems with my lower back.
Currently my diagnosis on that is a bulging disc at L4-5 and a leaking disc at L5-S1, Degenerative disc disease, some spinal stenosis (that my Dr. doesn't seem to be too worried about) and some bone spurs. I experience leg pain and numbness and have gone to 3 pain clinics over 7 yrs. with very little success. I've had every injection possible, lidacaine drips, magnesium drips, rhizotomies (Radiofrequency ablations), dicograms, MRI's, the problem is that the problem can't be pinpointed.
I've also had migraines for years which I am on daily meds for, but I still get them weekly and my neurologist is out of answers. An excellent surgeon said that I wasn't a good candidate for surgery because he couldn't guarantee me a good outcome and the latest studies show that people with FMS, depression and migraines do WORSE after surgery than if they never had it.
For the past few months I've had some new symptoms, stomach pains, diarrhea with constipation in between, itchy skin that feels like bugs are biting me, dizziness and even a couple of bouts of bad unexplained hives. I've just started seeing a new primary care Dr., my old one retired and wasn't good anyway. But the Dr.s don't seem to even know what to look for! I'm on 2 anti-depressants per day, 2 migraine meds per day and 2 if I feel one coming on, 2 sleep medications per day because I cannot sleep due to pain, a muscle relaxer and Percocet 10mg/325mg as needed (lately 2xdaily, 60 USED to ast me 4 months!)
My latest pain Dr. said that she has no more answers. My new PC Dr. will not prescribe pain medication. I am ready to quit permanently because I cannot live this way. I have pain EVERYWHERE! I am on SSDI, so I don't have money for "extra's" like a chiropractor or massage therapy. And worst of all, I live alone and can't even do housework. My 2 kids (in their 20's) think I'm a "complainer and whiner" when I ask them to help me. Being a burden makes me more depressed. Can anyone relate and offer me advice? Is there something my Dr.s have overlooked? I go to specialists in the Harvard Medical School group of Dr.'s in Boston. I'm like a totally different person than I used to be and hate it!
Currently my diagnosis on that is a bulging disc at L4-5 and a leaking disc at L5-S1, Degenerative disc disease, some spinal stenosis (that my Dr. doesn't seem to be too worried about) and some bone spurs. I experience leg pain and numbness and have gone to 3 pain clinics over 7 yrs. with very little success. I've had every injection possible, lidacaine drips, magnesium drips, rhizotomies (Radiofrequency ablations), dicograms, MRI's, the problem is that the problem can't be pinpointed.
I've also had migraines for years which I am on daily meds for, but I still get them weekly and my neurologist is out of answers. An excellent surgeon said that I wasn't a good candidate for surgery because he couldn't guarantee me a good outcome and the latest studies show that people with FMS, depression and migraines do WORSE after surgery than if they never had it.
For the past few months I've had some new symptoms, stomach pains, diarrhea with constipation in between, itchy skin that feels like bugs are biting me, dizziness and even a couple of bouts of bad unexplained hives. I've just started seeing a new primary care Dr., my old one retired and wasn't good anyway. But the Dr.s don't seem to even know what to look for! I'm on 2 anti-depressants per day, 2 migraine meds per day and 2 if I feel one coming on, 2 sleep medications per day because I cannot sleep due to pain, a muscle relaxer and Percocet 10mg/325mg as needed (lately 2xdaily, 60 USED to ast me 4 months!)
My latest pain Dr. said that she has no more answers. My new PC Dr. will not prescribe pain medication. I am ready to quit permanently because I cannot live this way. I have pain EVERYWHERE! I am on SSDI, so I don't have money for "extra's" like a chiropractor or massage therapy. And worst of all, I live alone and can't even do housework. My 2 kids (in their 20's) think I'm a "complainer and whiner" when I ask them to help me. Being a burden makes me more depressed. Can anyone relate and offer me advice? Is there something my Dr.s have overlooked? I go to specialists in the Harvard Medical School group of Dr.'s in Boston. I'm like a totally different person than I used to be and hate it!
This is an old thread. There has been no activity on this thread since November 08. I have not seen this poster recently. You may want to try to contact Beki directly.
Peace,
Tuck
Peace,
Tuck
Just another thought: You say you're itching, etc. The moment I got off certain medications, my rash went away and I stopped itching. I had had both symptoms for years before I discovered that a change of meds solved the situation. Hope this helps.
I can certainly relate to your pain and also your disappointment in your children. The thing that helped me with a husband who didn't understand or support me was this: I went to the doctor and set up an appointment where my husband would accompany me. I primed the doctor on what he should say to my husband .. tell him that I was indeed in severe pain and suffered from dibilitating anxiety regarding the pain; that housework was a huge effort for me and arrangements must be made for him to help around the house; that I could take care of the household paperwork and small jobs which didn't require too much effort; and above all, that I was indeed very ill, and he should support me emotionally as well as physically.
The doctor agreed to all of the above, and added a few other pertinent thoughts when my husband and I showed up for the meeting. He also gave us a video to watch together about the effects of fibromyalgia and, in my case, the last stages of rheumatoid arthritis. When we watched it that night, it scared the bejeezzus out of both of us, and hubby finally realized how bad the situation was. He became supportive and helpful over the short term, but had to be reminded of the doctor's visit and video occasionally.
You can get videos on your disease from your local library, and if you have a supoortive doctor, you can arrange for an appointment with your children. I do hope you can do these things, because depression over being alone and unsupported just adds to the physical pain ... I know. I've been there.
Please let us know how you're faring. We'll be thinking of you.
R.
The doctor agreed to all of the above, and added a few other pertinent thoughts when my husband and I showed up for the meeting. He also gave us a video to watch together about the effects of fibromyalgia and, in my case, the last stages of rheumatoid arthritis. When we watched it that night, it scared the bejeezzus out of both of us, and hubby finally realized how bad the situation was. He became supportive and helpful over the short term, but had to be reminded of the doctor's visit and video occasionally.
You can get videos on your disease from your local library, and if you have a supoortive doctor, you can arrange for an appointment with your children. I do hope you can do these things, because depression over being alone and unsupported just adds to the physical pain ... I know. I've been there.
Please let us know how you're faring. We'll be thinking of you.
R.
I am going throught the same thing. 5 years of neuropathy and leg pain and cramps. Clonazepam was helping, but now over a year, it is hurting and I can't get off. All tests come back negative. Doctors cannot tell me what it is and lack of sleep is terrible. I can't do thsi much longer.
Woops, one other matter:
The symptoms you indicate, and the fact that you are on multiple medications which interfere with serotonin, makes it possible that you have a mild form of serotonin toxicity. Serotonin is stored by the body in cells along the gut wall - it can lead to intestinal distress, vomiting, and cramping or stomach pain, and sometimes to strong headaches. Just a guess but no harm at all in checking it out:
"www.australianprescriber.com/magazine/26/3/62/3/"
Regards,
OtisDaMan
The symptoms you indicate, and the fact that you are on multiple medications which interfere with serotonin, makes it possible that you have a mild form of serotonin toxicity. Serotonin is stored by the body in cells along the gut wall - it can lead to intestinal distress, vomiting, and cramping or stomach pain, and sometimes to strong headaches. Just a guess but no harm at all in checking it out:
"www.australianprescriber.com/magazine/26/3/62/3/"
Regards,
OtisDaMan
Hi Beki,
As you have probably surmised, many people on this site and forum know from experience the general effects of chronic pain, whatever the cause(s). We can empathise and sympathise with you. Hang in there and try to find a balance of trade-offs in your life so that you have a fighting chance of at least reducing the pain on a day by day basis.
Exercise in any form (even simple walking or hydrotherapy/wading), so long as it is reasonably frequent, is important for the long haul...it may not help the pain itself (in my case often I have more pain immediately after, but once that is over I feel looser through the spinal area which helps with the rest of the day) but it keeps the body in a healthier condition, which reduces the chances of more trouble down the track. Exercise is also good for the brain itself, and as importantly, just suceeding in having some exercise can provide some motivation to tackle other tasks later in the day. Exercise isn't a panacea, and is unlikely to cure depression, but it certainly can be one extra ingredient in lessening the symptoms of depression.
Medicinally there are still a number of pharmaceutical options. Without a complete diagnosis it simply isn't possible to give a list of drugs that will elminate or at least reduce your physical symptoms. When it comes to chronic pain, at least a third of patients have no identifiable cause, and a significant number receive diagnoses (such as fibro) that are best treated as a probability-based diagnosis rather than a definitive diagnosis. Finally in a number of cases there are several separate causes of the chronic pain condition, all of which need treatment in order to significantly reduce the pain. This may lead to pain specialists prescribing several medications that together will better target the causes of pain. Some drug combinations are chosen because of a synergistic effect (that is, they interact and increase the efficacy of the drugs at lower doses than if given individually). As an example, I am currently experimenting with a combination of a tricyclic antidepressant and an anticonvulsant: both of these act on the central nervous system in a complementary fashion (so the theory goes) and reduce pain. The added benefit of this combination is that if you need antidepressants anyway, you might be able to choose one that is good for both depression and is part of a standard drug combination prescribed for chronic pain. I'm taking amitriptyline at 40mg/day and lyrica (aka pregabalin) at 150-300mg/day for pain, as a drug combination. The amitriptyline takes 3-5 weeks to kick in when used for depression, and so a good two-three month trial is needed for assessment of the combination of amitriptyline and lyrica. The good pain specialists should be quite aware of the fact that they need to treat depression, anxiety and chronic pain as a whole, so keep seeking out one until you find one who is able to do that. Since you have mentioned PTSD, there is an extra dimension to your treatment needs: on the medicinal side I would guess that anxiety and hyper-arrousal need appropriate medication too - a specialist is definitely called for here.
Emotionally, having family and/or friends who are either critical or simply lacking in understanding is a great source of ongoing misery for many in the chronic pain club. It is quite important to find a way of minimising that misery without ditching friends and especially without ditching family. Remember that your sons wouldn't be alive now if you hadn't made sacrifices for their wellbeing; in other words, you aren't a burden on them! However, it is you who will need to remind yourself of that every time you feel you are thinking in that way - part of overcoming chronic pain/depression's sapping effects is by nipping such thoughts in the bud. Perhaps providing your sons a book that discusses chronic pain, and its very personal impact upon the unfortunate sufferer, will aid them in realising what you are going through. One of my old friends had no idea of what I was putting up with until he found himself in the same boat; although unspoken, it is obvious that the experience of chronic pain in both of us has repaired our friendship. Sometimes with people it's like that.
All the best,
OtisDaMan
As you have probably surmised, many people on this site and forum know from experience the general effects of chronic pain, whatever the cause(s). We can empathise and sympathise with you. Hang in there and try to find a balance of trade-offs in your life so that you have a fighting chance of at least reducing the pain on a day by day basis.
Exercise in any form (even simple walking or hydrotherapy/wading), so long as it is reasonably frequent, is important for the long haul...it may not help the pain itself (in my case often I have more pain immediately after, but once that is over I feel looser through the spinal area which helps with the rest of the day) but it keeps the body in a healthier condition, which reduces the chances of more trouble down the track. Exercise is also good for the brain itself, and as importantly, just suceeding in having some exercise can provide some motivation to tackle other tasks later in the day. Exercise isn't a panacea, and is unlikely to cure depression, but it certainly can be one extra ingredient in lessening the symptoms of depression.
Medicinally there are still a number of pharmaceutical options. Without a complete diagnosis it simply isn't possible to give a list of drugs that will elminate or at least reduce your physical symptoms. When it comes to chronic pain, at least a third of patients have no identifiable cause, and a significant number receive diagnoses (such as fibro) that are best treated as a probability-based diagnosis rather than a definitive diagnosis. Finally in a number of cases there are several separate causes of the chronic pain condition, all of which need treatment in order to significantly reduce the pain. This may lead to pain specialists prescribing several medications that together will better target the causes of pain. Some drug combinations are chosen because of a synergistic effect (that is, they interact and increase the efficacy of the drugs at lower doses than if given individually). As an example, I am currently experimenting with a combination of a tricyclic antidepressant and an anticonvulsant: both of these act on the central nervous system in a complementary fashion (so the theory goes) and reduce pain. The added benefit of this combination is that if you need antidepressants anyway, you might be able to choose one that is good for both depression and is part of a standard drug combination prescribed for chronic pain. I'm taking amitriptyline at 40mg/day and lyrica (aka pregabalin) at 150-300mg/day for pain, as a drug combination. The amitriptyline takes 3-5 weeks to kick in when used for depression, and so a good two-three month trial is needed for assessment of the combination of amitriptyline and lyrica. The good pain specialists should be quite aware of the fact that they need to treat depression, anxiety and chronic pain as a whole, so keep seeking out one until you find one who is able to do that. Since you have mentioned PTSD, there is an extra dimension to your treatment needs: on the medicinal side I would guess that anxiety and hyper-arrousal need appropriate medication too - a specialist is definitely called for here.
Emotionally, having family and/or friends who are either critical or simply lacking in understanding is a great source of ongoing misery for many in the chronic pain club. It is quite important to find a way of minimising that misery without ditching friends and especially without ditching family. Remember that your sons wouldn't be alive now if you hadn't made sacrifices for their wellbeing; in other words, you aren't a burden on them! However, it is you who will need to remind yourself of that every time you feel you are thinking in that way - part of overcoming chronic pain/depression's sapping effects is by nipping such thoughts in the bud. Perhaps providing your sons a book that discusses chronic pain, and its very personal impact upon the unfortunate sufferer, will aid them in realising what you are going through. One of my old friends had no idea of what I was putting up with until he found himself in the same boat; although unspoken, it is obvious that the experience of chronic pain in both of us has repaired our friendship. Sometimes with people it's like that.
All the best,
OtisDaMan
I ama 50 year old mom who also suffers from myofascial/fibro pain, including back and shoulder pain, and depression & now having hip pain. I wenttot a pain doc for years, and I was just hanging on monthly with injections, but then the doc starting doing less of my medications (the medicine in the injections)and I wondered why it wasn't working. Well after receiving my medical records I knew, plus I stopped going to him, because he was double billing my insurance company. I feel this doc ripped me off, by having me come back more frequently, I was going bi weekly, and with less injection medicine. I was atleast trying to live a normal life with those injection plus oral narcotics, but he was doing less and less for me as time went along. But, you are not alone, I also have 95% of the same problems as you do, now running into stomach pains, and have had that itching like bugs crawling on me, and dizziness, and buldging disks. But no one can find the problem, and no one can help me. I went ot my PC and he said the same thing, muscle relaxers, and pain meds, but the break through pain is real bad,the muscle relaxers do relieve some, but he pain is horrid, and sometimes unbearable. I also am very fustrated, and upset with no answers...BUT...today I have a appt with a new pain management practice, (of coarse out of town) but I will keep you informed with what I find out today. I hope someone can get me some relief...or I may just go out of my mind in this unbearable pain. I will try to let you know today how I make out. I hope I can get some good news...I HOPE !!!
Also fms can cause uncontrolable itchiness on you whole body. IBS is also part of FMS . seek out the largest list for FMS symptoms to see what else can be expained. Many are overlapping syndromes, many are shocking. Good luck
I hear you and know what you are going thru, I've been there too. I have fibro, 5 bulging disks, depression/anxiety and on and on. You need to find a Ra dr. that has a good reputation for being a listening and good bedside mannered doctor. Nobody has time to listen to you and that is worsening your issues. An RA dr. will need to find the right cocktail of medicines to treat your health issues and that may take time but it can be worth it. It may take a few months because each medicine needs about 4 to 6 weeks to take full effect. Also a bulging disk doesn't always cause pain, it has to be bulging enought o touch the nerves tha are surrounded by a protective sac. The leaking disk you mentioned is probably causing the pain you have because the liquid will cause pain when touching certain areas near your spine. Have you seen a nerosurgeon or a nerologist for the leaking area? Yes many dr. won't touch you because of the FMS and Migraines-things can get worse if they mess with your spine and spinal fluid. Have you had a milagram yet? That does mess with spinal fluid but it also will show causes for pain that other tests don't show. It will also cause migraines, I had one done and was moved the wrong way in 1985-had a steady migraine for 2 weeks until my surgery was done on S1L5. I hope that you find some relief soon and keep us updated please. Sharon
Hi, I'm not sure I have much more to add to the comments, but to say again-You are not alone. I also have an ongoing struggle with chronic pain due to degenerative disc disease and stenosis in my lumbar spine as well as degenerative joint disease in my right hip which I suffer sciatic pain down my leg from and just 7 weeks ago I fell down 17 concrete stairs. So currently, I'm dealing with acute and chronic pain. I take pain meds and muscle relaxers, but they don't always take away the pain and after taking them regularly for about 2-3 weeks, I have to skip a week so the meds will work again. Such a viscious cycle. I also suffer from clinical depression and anxiety and irritable bowel syndrome. And like you do not currently have medical insurance.
I have much empathy for you. One thing I can say is that I have a good pcp who is willing to give me norco and soma, but it is up to me to take it properly and to also do other nonmed measures to help my pain. Are you able to stretch or do light exercise?? Also, sometimes I use ice packs or a heating pad, which ever feels better at the time.
Getting your depression under control is crucial. It has been proven that patients who suffer from depression or anxiety usually rate their pain higher!!!
I know it may sound corny, but even slow cleansing breathing and guided imagery can help. Resources on internet or library could held you with the preceding.
Don't give up. Their has to be an answer out there for you. Keep communicating with those who can have empathy for your situation.
I'm sorry your having such a hard time, but your doing the smart thing to talk to the people on medhelp. They are a wealth of info and support. Good luck........
I have much empathy for you. One thing I can say is that I have a good pcp who is willing to give me norco and soma, but it is up to me to take it properly and to also do other nonmed measures to help my pain. Are you able to stretch or do light exercise?? Also, sometimes I use ice packs or a heating pad, which ever feels better at the time.
Getting your depression under control is crucial. It has been proven that patients who suffer from depression or anxiety usually rate their pain higher!!!
I know it may sound corny, but even slow cleansing breathing and guided imagery can help. Resources on internet or library could held you with the preceding.
Don't give up. Their has to be an answer out there for you. Keep communicating with those who can have empathy for your situation.
I'm sorry your having such a hard time, but your doing the smart thing to talk to the people on medhelp. They are a wealth of info and support. Good luck........
Hi, I am sorry for how you are feeling. I can relate, as I have many of your symptoms. I have fibro, cervical spine problems, lower back and buttock pain, knee arthritis, hand arthritis, carpal tunnel. It's a nightmare. I am 52 and I used to be very active and happy, now I am miserable and stay home all the time because of the pain.
I am sorry your children are not supportive. I have a husband who is not very sympathetic or understanding, and one son who cares but he has his life. It's very lonely, I know.
The doctor routine and trying to get someone to help gets exhausting. I hope you find someone/something that helps you. I'm still looking myself.
I am sorry your children are not supportive. I have a husband who is not very sympathetic or understanding, and one son who cares but he has his life. It's very lonely, I know.
The doctor routine and trying to get someone to help gets exhausting. I hope you find someone/something that helps you. I'm still looking myself.
Hello Beki,
Welcome to the Pain Management Forum. I am glad you found us at MedHelp. I am very sorry you are having such horrid pain. I,m sure being alone and having no support makes it worse.
It sounds like you have had some good diagnostic procedures but not the answers you are seeking. It maybe possible that the pain is due to the diagnoses they have given you. Fibromyalgia/Myofascial Pain Disorder causes most ppl significant pain. And the skin and gastrointestinal issues could be related to the interaction of the medications along with all the stress you must be experiencing. But I am not a physician and I would not want to guess about your physical problems.
What I can suggest is that you locate another PCP. I don't know what state you live in and that makes a difference as to which physician can prescribe what for you. If your PCP is not doing the job that you hired him to do you need to find one that will. If you hired a plumber to fix your leaking facet and after you paid him it still leaked what would you do? I hope your response is fire him. Physicians are really no different than plumbers. They are not Gods.
And it appears that your pain is not sufficiently controlled. You have multiple reasons to have pain. You just know need it controlled. If your PMP is not willing to prescribe medications that will ease your pain than it sounds to me as if you also need a new PMP.
Hang in there. We are here for you. Will will support you in any way we can. You may also PM me if you would like. Please keep in touch and let us know how you are doing. I hope you will be able to obtain some pain relief soon. Please take care and I will look forward to your next update. Tuck
Welcome to the Pain Management Forum. I am glad you found us at MedHelp. I am very sorry you are having such horrid pain. I,m sure being alone and having no support makes it worse.
It sounds like you have had some good diagnostic procedures but not the answers you are seeking. It maybe possible that the pain is due to the diagnoses they have given you. Fibromyalgia/Myofascial Pain Disorder causes most ppl significant pain. And the skin and gastrointestinal issues could be related to the interaction of the medications along with all the stress you must be experiencing. But I am not a physician and I would not want to guess about your physical problems.
What I can suggest is that you locate another PCP. I don't know what state you live in and that makes a difference as to which physician can prescribe what for you. If your PCP is not doing the job that you hired him to do you need to find one that will. If you hired a plumber to fix your leaking facet and after you paid him it still leaked what would you do? I hope your response is fire him. Physicians are really no different than plumbers. They are not Gods.
And it appears that your pain is not sufficiently controlled. You have multiple reasons to have pain. You just know need it controlled. If your PMP is not willing to prescribe medications that will ease your pain than it sounds to me as if you also need a new PMP.
Hang in there. We are here for you. Will will support you in any way we can. You may also PM me if you would like. Please keep in touch and let us know how you are doing. I hope you will be able to obtain some pain relief soon. Please take care and I will look forward to your next update. Tuck
i am so sorry for the pain you are going through.. it took me about 12 yrs to find a pain specialist who could find a way to control my pain, i have had one back surgery in 93 on L5_S1...and after that because of renal failure my other disc hernaited.. so i finally found the pain spec. i go to now and i take a timed released morphine 30 mg. and up to 4 percs 10/325 a day fro breakthrough pain, and every 6 months i get a series of 3 shots in my spine.. my pain is never completley gonw but it is controled.. i dont know if this wiull help you i hope maybe something in there will good luck nd may god bles you.. please keep us informed how you are doing anf if you need to talk or have questions feel free to pm me, and there will be sevel others that will answee and many of them are more knowageable then me..brian
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