- This topic has 13 replies, 3 voices, and was last updated 9 years, 11 months ago by
.
-
Posts
-
Who is on pain management? Does it help you? I started it over a year ago, but it only takes the edge of my pain. I just recently was clinical diagnosed with EDS, and I think I am type 3. I will find out in a few months for sure. I have overlapping symptoms with other types. Anyways, if you were diagnosed with EDS after starting pain management, did your doctor change your therapy? Every day for me is worst than the day before. I rarely have a decent day, and I can barely function. What are treatment that help? Thanks.
Hi, Although pain hasn’t been a huge issue for me until my shoulders “went”, I know that a lot of us are on Cymbalta. Dr.McDonnell will often go up to 120mg/day for EDS — twice the recommended dose. It has a bit of a mood-lifter, too, which can’t be all bad! I have a TENS machine, but I ended up using it more as a distraction for the kids’ “growing pains” than anything else! I’ve never gone to narcotics (I hate the way they make me feel), but know plenty of folks who swear by them. I know of a piano player who wore a gazillion morphine patches on his body and continued to play the piano professionally until the day he died. Amazing! I tried Normast (it hits the same receptors as marijuana, but without the “high”. I never noticed a difference! Massage helps me more than most anything, I think (that and distraction with music — as you likely know!). 😉
Hi, Although pain hasn’t been a huge issue for me until my shoulders “went”, I know that a lot of us are on Cymbalta. Dr.McDonnell will often go up to 120mg/day for EDS — twice the recommended dose. It has a bit of a mood-lifter, too, which can’t be all bad! I have a TENS machine, but I ended up using it more as a distraction for the kids’ “growing pains” than anything else! I’ve never gone to narcotics (I hate the way they make me feel), but know plenty of folks who swear by them. I know of a piano player who wore a gazillion morphine patches on his body and continued to play the piano professionally until the day he died. Amazing! I tried Normast (it hits the same receptors as marijuana, but without the “high”. I never noticed a difference! Massage helps me more than most anything, I think (that and distraction with music — as you likely know!). 😉
Thanks Dr. Diana,
I tried Cybalta, but it did nothing for me. It did not even help my depression. I am currently on Zoloft 150mg. It helps my mood but not the pain. I have tried PT, TENS, injections, surgery, braces, anti-depressants, Neurotin, anti-inflamatories, and currently I am on hydrocodone and a Fentanyl patch. They really do not help much. It is frustrating! It is hard to find a good pain management doctor as well. The older I get the more my body falls apart, and I am only 37.
I think most hypermobile types of EDS folks will share in your frustration. Perhaps others will have more to add? Have you asked your doctor about morphine patches? Hang in, my friend…
Dr. Diana,
I have not asked my pain management doctor yet for more pain control, but I may have to soon. I think he worried that I am only 37 and I will be on pain management for life. I actually saw him today and I told him about having been clinically diagnosed with EDS. He knew what it is and said he has several patients with it. He did suggest I go to a group counseling session for pain distraction. He thought it might help so I don’t feel so alone. Have you done this? I already try to distract myself, but there are times when I am totally miserable. Those times are more frequent than not.
additionally, here’s a general pain thing I wrote earlier . . .
Have your Vitamin D checked, as several on here are either housebound, or photophobic (or stay in the shade when the sun is out) therefore never actually get a proper top-up of Vitamin D, and so this essential vitamin can deplete and believe me, this can cause a lot of PAIN.
If appropriate, get your estrogen levels checked, as this may need supplementing too. HRT relieves some of the pain for me.
If you have muscle fatigue issues, DON’T push yourself to do more than you can, as the bi-product of this is lactic acid in the muscles = more PAIN!
Get a massage whenever you can, as this helps the lymphatic system drain away toxins, inflammation and therefore PAIN.
Those with leg pain – try a nice salty bacon sandwich – yes it does work! (especially for the ‘purple leg’ or ‘white leg’ pain) it may be the salt (or, according to my friend, it may just be the growth hormone they are sometimes pumped with! lol).
Let me know how you get on.
Barbara
(UK)Thanks Barbara,
I do take vitamin D3 for that very reason. How much do you take? I also crave salt and so does my mom. We also rely heavily on caffeine. My mom drinks coffee all day long. I tell my husband all the time that I don’t feel well and I need salt. I love pickles and just about any thing with salt. It is funny how our bodies compensate with cravings to get what it needs. I have had orthostatic intolerance ever since I was a teenager. I mentioned it to one doctor when I was a kid and he blew me off. So I have just dealt with it and never mentioned it to any current doctor. It is sad how many things I have just ” dealt with”. About a month ago is when I sat down and listed out all my symptoms and those of my mom and kids. That is when I realized, FINALLY, that I have EDS. I have been clinical diagnosed, but I am waiting on a geneticist to tell me my type. I assume type III, but I have skin and vascular involvement too. I even had a brain bleed in 2007. I can’t tell you how many times I wished I had just died with it. I even delayed going to the ED, because I did not have anyone to watch my child, so I guess it is amazing that I did not die. I was left debilitated for 9 months and with a headache I never thought would go away. I can’t believe how many doctors will say “I know something is wrong”, but they did not want to take the time to figure it out. This year I have had bilateral total knee replacements and abdominal surgery. They were not successful for helping my pain. Now that I know that I have EDS it explains so much. I am very new to this and I am overwhelmed. I am not entirely sure of what I need to do next. I have been pretty ill for a long time, and I have just dealt with it. Unfortunately it is beyond the just live with it stage. My mobility and pain issues are debilitating. I kept thinking I would be able to go back to work, but I realize at this point I am unable. In the last seven plus years I have gone from being a fun, active, productive member of society in to a person that relies on others for help. I still want to do things, but my body won’t let me. It is hard to accept my new normal.I take Adcal D3 (effervescent) night and morning and, although over these last few years my level has improved and it’s a while since it was tested, I guess it is still at the low end of normal, as I still have stinging bone pain.
Yes it’s so sad you’ve had to suffer all these years, you do get to a stage where you think, ‘what’s the point?’ as far as doctors are concerned. I don’t get it, to become a doctor you need a higher level of intelligence and a certain level of ‘staying power’ to undergo such lengthy training in the first place, yet having achieved this accolade of worthiness, when faced with a complex case, difficult to unravel, many of them just can’t be bothered – have they used up all of their conscientiousness during their training, or is there just no incentive for them to deal with it ? They get paid anyway and they get paid well enough, it’s a pity their pay is not performance related, now that would sort out the real wheat from the chaff. What happened to all the ‘House MD’s’ of this world ?
For now, we have to be our own advocates and Look, Listen and Learn, as they used to say at school. No doubt you will have developed coping mechanisms along the way, like many of us, that have helped you get by, we all need to share these and read, as others publicise theirs and make the necessary adjustments to lifestyle for maximum comfort.
I know it’s so difficult when you’ve children to look after and my heart goes out to all of you in this position. So, if this is you, try and get your children involved, look for little ways to make chores fun, like see who can pair the most socks and silly stuff like that, or something they may be curious about or like doing, like ‘weighing’ out the ingredients for a cake, or rewarding, like once they’ve changed their bedding they can make a fancy ice-cream sundae, etc. If you can ‘offload’ some of the menial energy consuming tasks, so all you are doing is supervising, hey your kids are learning to look after themselves and you are getting (a little more) rest.
Barbara
(UK)I take Adcal D3 (effervescent) night and morning and, although over these last few years my level has improved and it’s a while since it was tested, I guess it is still at the low end of normal, as I still have stinging bone pain.
Yes it’s so sad you’ve had to suffer all these years, you do get to a stage where you think, ‘what’s the point?’ as far as doctors are concerned. I don’t get it, to become a doctor you need a higher level of intelligence and a certain level of ‘staying power’ to undergo such lengthy training in the first place, yet having achieved this accolade of worthiness, when faced with a complex case, difficult to unravel, many of them just can’t be bothered – have they used up all of their conscientiousness during their training, or is there just no incentive for them to deal with it ? They get paid anyway and they get paid well enough, it’s a pity their pay is not performance related, now that would sort out the real wheat from the chaff. What happened to all the ‘House MD’s’ of this world ?
For now, we have to be our own advocates and Look, Listen and Learn, as they used to say at school. No doubt you will have developed coping mechanisms along the way, like many of us, that have helped you get by, we all need to share these and read, as others publicise theirs and make the necessary adjustments to lifestyle for maximum comfort.
I know it’s so difficult when you’ve children to look after and my heart goes out to all of you in this position. So, if this is you, try and get your children involved, look for little ways to make chores fun, like see who can pair the most socks and silly stuff like that, or something they may be curious about or like doing, like ‘weighing’ out the ingredients for a cake, or rewarding, like once they’ve changed their bedding they can make a fancy ice-cream sundae, etc. If you can ‘offload’ some of the menial energy consuming tasks, so all you are doing is supervising, hey your kids are learning to look after themselves and you are getting (a little more) rest.
Barbara
(UK)Thanks again Barbara. I appreciate your help. It has to be the middle of the night in the UK. It is so cool to be able to talk with others in far off places. I work in the medical profession and for years taught medical students, residents, fellows, and medical technology students. It is said to say that the next generation of doctors do just what they need to get by. Very few go the extra mile. Probably close to 85 per cent could care less about being a good a doctor but more about the status and the money. The sad thing is a good doctor does not make a lot of money for the amount of work involved. As it is said what do you call a doctor that finished last in medical school? Doctor! Whether you are first or last you graduate. It does not look good for the school if their pass rate is low. I have gotten better at picking good doctors, but even if you have a good eager doctor in the beginning the real trick is if they stay that way. I just went back to my rheumatologist last week and it was a 180. She was a great doctor the first time I saw her and this time she was awful. A complete waste of time and money. I left in tears.
I think in some ways I am to blame for doctors not diagnosing me. I can’t possibly bring up all my symptoms in one visit. Because of my age and my lax ligaments I went to a dozen orthopedic doctors before I found one who wanted to help me. The rest saw me a huge liability and a risk. After all they don’t want to be sued and they could tell I was not an easy case. I started eliminating things from my medical history so I could get seen. For example I never mentioned my orthostatic intolerance, my heart murmur, irregular heart beat, chest pain, or that I had extensive orthodontic and periodontal surgery. I never knew that my flexibility was abnormal. I did show my orthopedic some tricks after he mentioned how lose I was. His mouth almost dropped to the floor. However, no one has looked at my abnormal scaring or lose skin along with all the other signs. The biggest problem I think is you go to one doctor for dermatology, one for pain, one for orthopedic, etc. Therefore, no one doctor looks at the big picture of your overalls health. Doctor are always running late always overbooked, so therefore pass you one to the next doctor. No one doctor stops and says “hey! let me be the one to help this patient “. They assume the next doctor will do that instead.
I do put my kids to work. Although my son is the only one that helps much. My other kids are 1 & 2. Their helping is different! 🙂 and not always helpful. They keep me going. I have to be here for them. Even though it is in a quite limited state.
How long have you been disabled? Do you have kids? Do they have EDS too? I am sure my kids do. I meet with a genentist in August so I hope she can help me and my family decide what type(s) we have, and what other defects we have.
I have EDS, orthostatic intolerance, asthma, severe degenerative joint and bone disease, depression, heart murmur, gall bladder disease and removal, hernias and hernia repair, had a brain bleed and other bleeding problems/ brusing, TMJ and other orthodontic and periodontal problems, arthritis, GERD, poly cystic ovarian disease. So maybe what you mentiond about HRT would help. The PCOD affects my hormones and I have had problems since I was a teen. Most symptoms became worst as a teen. As you see the list is long and there is even more. It is overwhelming to say the least.
Oh, I also found that B12 helps with pain! Some pain doctors inject B12 into the joint (ouch). I prefer to keep my levels up systemically. 😉 This is expensive and not yet in the EDS literature (but it is in the fibromyalgia literature). Human growth hormone helps me. I started it 10 years ago as sort of an experiment to see if I could keep from falling apart at menopause, as I heard so many of us did. I kept my levels at the upper end of normal. I didn’t realize it was doing anything until I went on a trip for 12 days and didn’t pack it. OMG. After about a week, the pain in my back was horrible. Ironically, I was at the EDS conference and couldn’t even sit still. Needless to say, I went back on it as soon as I got home! You may want to have your levels checked. Thanks and hang in!
Oh, I also found that B12 helps with pain! Some pain doctors inject B12 into the joint (ouch). I prefer to keep my levels up systemically. 😉 This is expensive and not yet in the EDS literature (but it is in the fibromyalgia literature). Human growth hormone helps me. I started it 10 years ago as sort of an experiment to see if I could keep from falling apart at menopause, as I heard so many of us did. I kept my levels at the upper end of normal. I didn’t realize it was doing anything until I went on a trip for 12 days and didn’t pack it. OMG. After about a week, the pain in my back was horrible. Ironically, I was at the EDS conference and couldn’t even sit still. Needless to say, I went back on it as soon as I got home! You may want to have your levels checked. Thanks and hang in!
Dr. Diana,
Which level do I need to get checked? I take B12 and B complex and I do notice they help some. I started taking them because I take Metformin for poly cystic ovarian disease. Metformin raises homocysteine levels and lower B vitamins absorption. Plus I take Nexium, Zantac, and tums because I have severe GERD. They interfere with absorption too. Therefore, I have no idea if my levels are still normal or not. At one time my doctor checked and my B12 levels were too high. At least according to her. Can you have too high of a level when you are suppose to excrete the excess in your urine? With the HGH how to you take it? A long time ago I had my levels checked and they were at the low end of normal. I don’t know much about it? What does it do to help and how do I take it? How much is it? Which one did you forget to take on your trip? On I side note I have always had hormone problems. I get migraines and my pain is always worst right before my cycle. For example I felt better while pregnant in someways. Especially with my moods. I still take a lose dose progesterone only BCP to regulate my cycle and help with the homonal drop before my period. It does not help as much as I would like, but it helps with the migraines.Please check with your doc, but I looked at my serum B12 levels to start. Now I just inject some once in a while, and take a lozenge under my tongue a couple times a week. Although I’ve never heard of someone’s level being too high, I did research to be sure I could be a bit sloppy with it, and found that it is almost impossible to overdose on it (lucky for me!). As far as HGH goes, I’ve taken a lot of different forms — I’m on Omnitrope right now. They are all very pricey — about $400/month and you inject it subQ. Research is scanty, but at least one study showed that it helped pain of fibromyalgia. I initially started it just to try to maintain some muscle mass during menopause (which didn’t happen, BTW!). Now I see that it does seem to help with pain, and that was one reason I never had pain before! I thought I was just lucky. ha. Your doctor will help you figure out your initial dose, then retest. I inject it 5-6 days/week. They still think it is a good idea to take a day off during the week to maintain the feedback loop (so your body doesn’t stop making its own). I really can’t tell you if it is worth the cost, though, honestly. All of us seem to have “endocrinology gone wild” and it is TOUGH to get things stable. FOR SURE!
Please check with your doc, but I looked at my serum B12 levels to start. Now I just inject some once in a while, and take a lozenge under my tongue a couple times a week. Although I’ve never heard of someone’s level being too high, I did research to be sure I could be a bit sloppy with it, and found that it is almost impossible to overdose on it (lucky for me!). As far as HGH goes, I’ve taken a lot of different forms — I’m on Omnitrope right now. They are all very pricey — about $400/month and you inject it subQ. Research is scanty, but at least one study showed that it helped pain of fibromyalgia. I initially started it just to try to maintain some muscle mass during menopause (which didn’t happen, BTW!). Now I see that it does seem to help with pain, and that was one reason I never had pain before! I thought I was just lucky. ha. Your doctor will help you figure out your initial dose, then retest. I inject it 5-6 days/week. They still think it is a good idea to take a day off during the week to maintain the feedback loop (so your body doesn’t stop making its own). I really can’t tell you if it is worth the cost, though, honestly. All of us seem to have “endocrinology gone wild” and it is TOUGH to get things stable. FOR SURE!
I am completely overwhelm for sure, and not being able to work makes everything worst.
I think everyone of us can relate to that feeling… I got to the point that I just needed to deal with one layer of the condition at a time. And my kids’ health had to come first, but I used my body as their testing guinea pig. It can be terribly overwhelming if we look at every symptom we have, FOR SURE! Hang in, my friend.
- You must be logged in to reply to this topic.