pain so bad in the morning when i first wake up that i cant even walk???

I been newly diagnosed with eds and im in so much pain and im very stiff when I frost wake up. does this happen to anybody else??? im going crazy feeling like this and I don't know what to do anymore. I can't take alot of pain meds as they make me so sick. my husband thinks maybe medical marijuana is something I should try but it scares me to even bring that up. does anyone else use it and if so has/does it work for pain management???? im really needing advice. plz anyone with eds comment

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I have the morning stiffness in my hands and feet. I always chalked it up to being tense in my sleep because of bad dreams. Now with this new info, I guess it's due to the EDS. I also get the same stiffness after sitting too long, which is hard because I have an office job. An aside.. @ Dessert1st, your line "it doesn't feel smart to even try to move quickly" describes my whole life!!

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One of the reasons I moved from the Central CA coast - which is absolutely gorgeous (that part I miss but AZ is cool too) was because I was on the ocean and it was damp and foggy all summer long. The avg. daily temp year round was only 60 to 65 with little variation at all - but the 'marine layer' and the summer had my little town foggy all summer long.... noted though was that I could drive a short ten minutes away and be in sunshine year round. Lots of micro-climates on the coast. So now I'm in AZ - and after I got used to my first summer which was quite shocking when the worst of summer set in - I think it's the best climate for me.

This summer is milder than last - the monsoons have brought humidity - but temps below a hundred - which is heavenly for me. I can even keep my screen door open and the blast of hot rather moist air feels so so good. Most of the time in summer it also feels good with the hot hot dry air - for some reason it's kinda healing to feel that nice warmth. Over 110 though I'm thinking of the Fall and can't wait till normal temps begin again. This summer - knock on wood - we haven't had as many 'extreme heat warnings'...

Some with dysautonomia swear the heat is the worst thing ever for their body's symptoms - but for some reason I don't find it bad. I do have a new "sweating" issue that is dumbfounding - so looking into the Clonidine perhaps as a cause - dunno - maybe hormones, blood sugar - who knows - but I've not been a sweat'er before so it's unusual - all over my face - so silly looking and the damp clothes - yuck. Still though I think getting away from the ocean is much better for this bag of bones and joint replacements!

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I know this is probably going to sound crazy, but what's helped me in the mornings with the pain and stiffness in EVERY joint is this: when i wake, before i try to get out of bed, i lay on my back and SLOWLY move each joint. I'll start with my ankles and very slowly and careful rotate them clockwise, then counter clockwise about 5 times each way. Then I move up to the knees, bending them 5 times or so, slowly. Then on the the hips, etc. After working all my joints, I roll to the end of the bed, swing my legs down first, feet on the floor, then slowly bring up my torso until I'm standing. It sucks to have to do this every morning but I find that by moving my joints first while still laying down helps "warm them up" instead of just getting out of bed immediately. Its much better to move the joints without the weight bearing aspect. I even do each finger and all 3 joints of each digit. Of course this doesn't feel good and there's pain involved, but I've found its better and less painful than just getting up right away and walking. Good luck!

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Is your pain all over, or is it primarily in your feet? If it's plantar fascitis, which is worse in the mornings, PT can make a huge difference. Low back pain can also be greatly alleviated by PT. I hope you find answers.

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@Feather3, I live in San Francisco. My joint pain does bother me a lot during the winter, but it's not nearly as bad as when I lived in Maine! My plan is to move to L.A. if it continues to get worse. It would be a good thing in a way because there are plenty of jobs in my field there. However, SF is my home and I'd rather not move unless I really have to.

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I feel the same way about the Mendocino coast; I wouldn't want to leave here; it's so beautiful here and a lot of my good friends are here... am thinking that the Central Coast might hold something for me, should the pain get too intense to cope.... I wouldn't be able to handle LA with all the smog (lived there as a kid for about nine months and was sick for six out of those nine months)... so I am thinking Central Coast unless we are in for some strange weather changes and the fog decides to burn off *lol*

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One thing I really like about the Bay Area is that we have a lot of "microclimates". If San Francisco gets to be too cold, there's the option of moving to a suburb to the south or inland. LA would be a last resort.

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Hi newmama, I can totally relate. I started getting the morning stiffness and severe pain in my late 20's and am now 62...so have I had this problem for a very long time now. I went for many years on no pain meds at all, but as my back and neck deteriorated badly over the years, and i also developed other painful conditions, I finally had to go on strong pain meds to preserve the most quality of life I can... However, I still dread the first half hour that I am up and out of bed....because of that awful stiffness and pain in my feet and legs and just about all my joints to one degree or another. As I read all of the posts in this discussion I related the most to what dessert1st and keepingittogether had to say. It does seem that if I take the time to do some muscle stretching in bed before i get up and start walking, I can reduce both the intensity of the pain and how long it is really bad. I especially find it helpful to stretch my feet and ankles quite a bit before getting up. I have never been a morning person so it certainly doesn't help to know that my first half hour or so is going to be very painful because of the morning stiffness/pain thing. I believe this morning phenomenon has to do with our overly lax joints moving around too much all day long the day before...resulting in inflammation that causes the pain and stiffness the next morning. I tend to associate the "gelling" thing (stiffness occurring after a period of inactivity) with the various kinds of arthritis ....at one period in my 50's I went thru a period where whenever I simply sat and rested for a few minutes I would have to go thru another period of stiffness and increased pain that I went thru every morning! Turned out that this was because I had developed an inflammatory arthritis called CPPD disease, which is an abnormal accumulation of calcium in the joints. The good news is that after about a year of really bad knee pain due to this arthritis, plus all the 'gelling" periods all day long, this cppd thing did appear to go into a sort of remission, which might be due to my getting my magnesium level up. My rheumatologist told me that the cause of CPPD isn't known, but it has been noted that it tends to occur in some people with magnesium levels on the low side, which mine was. I also read somewhere that it is not uncommon for EDSers to have somewhat low magnesium levels. Which is where the muscle spasms come in, at least for me. When I start getting lots of muscle spasms I start taking an over the counter magnesium supplement for a few days and the spasms go away. The reason I don't just routinely take magnesium supplements every day is that they really do tend to upset my stomach. I think it is probably better to take magnesium supplements in oral form rather than in a cream, because of what someone was mentioning about the difficulty in knowing how much is going to be absorbed via the skin. Magnesium is also said by a lot of sources to be very important for cardiovascular health, so I think oral tabs are the best way to take this mineral.
As we get older, just about everyone develops some degree of osteoarthritis, and people with EDS are very prone to having this happen at an earlier age than normal...sometimes at a very early age. While osteoarthritis does involve some inflammation, rheumatoid and other so-called "inflammatory arthritises" involve a much greater degree of inflammation. The general rule taught to me in nursing school is that if someone has morning pain and stiffness lasting about 30 minutes and then improving, then osteoarthritis might be the problem. Whereas if the pain/stiffness lasts more like an hour, this is said to more likely be rheumatoid arthritis or another one of the "inflammatory" types of arthritis, like the CPPD deposition disease. However, this is just a possibility to consider when looking at someone's pattern of symptoms and thinking about what the possible causes are. With EDS we seem to have the morning pain/stiffness way before arthritis has set in, even if we get it early.
Another thing I have found helpful over the years for my more painful joints are those microwaveable heating pads...I have quite a collection of all different sizes and shapes, and find them very helpful when some joint or other is hurting me a lot when I need to get up and get going somewhere...wrapping one of these hot pads around a joint or my neck really helps me keep moving with less pain when I need to keep to a certain schedule to get to an appointment or something like that. Corded heating pads are ok, but I like the microwaveable ones when I need to keep moving around while I am "wearing" it.

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We have a few microclimates here as well.... just not as easy to move around to in order to find housing :) I like my front porch; it faces east and in the mornings when the sun is out, it's so warm and toasty.... today we had a battle with the sun, fog and clouds. In the end, the fog won and my hike was cut short; it's when the pain set in.....

I liked the suggestion that Squitz came up with; it's a technique I've tried myself from time to time.... :) Some days it helps, some days it doesn't.

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Kris30, You sound just like me. Mornings have always been bad for me, I am stiff and my feet hurt, it is difficult to walk first thing in the morning and I can't even think straight. I fix everything the night before, and now have a coffee maker upstairs in my bathroom, and keep a little cooler with ice for my coffee milk. My hands hurt bad too and it is difficult to even pick up a glass of water. But, I have my pain meds laid out, fortunately I can take pain meds, thank God, I don't know what I would do without them. I take my meds first thing and turn on my coffee pot and I lay back down with my coffee, and then go downstairs after my meds can take affect. I do have a difficult time taking any kind of anti-inflamatory meds because of my stomach. I can take them a few days and then after that I start having trouble. The most rediculous thing is that my husband wants me to cook breakfast for him, I'm already in the kitchen enough, 7 days a week cooking a full dinner, and clean-up which most of it gets left to the next day. As far as the Marajuanna goes, I used to smoke pot myself yrs ago, and it definitely messed with my, already ADD brain, boy I couldn't tell left from right when I smoked, I really did like it because it helped so much with my creativity, but this is the bad part, at least for me, it actually intensified my pain. I had low back and leg pain and I didn't notice it much until I smoked pot the awareness of my pain really kicked in, and that is why I have never understood it's use for pain, because pot intensifies anything, it also made me extremely tired as it was wearing off, but I really did love it, and it is extremely good for nausea. Everyone is different in how they are affected by drugs, so it may be good for some people, and I couldn't even use it if I wanted to because of my pain contract. From what I have read about P.O.T.s the blood pressure thing it makes mornings difficult, and that explains to me why my mornings use to be so bad. That is when I had the panic attacks and the heaving, extreme dry heaves.

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Ok, now I know why I had the tendency to faint when I smoked pot. I would have severe dizzy spells when I stood up and have fainted several times at any kind of music festival, just drop over, and I could see what you are saying about the Oxygen thing, makes perfect sense with what I experienced. But, if you just lay down at the end of the day, and smoke it, it would probably be alright.

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As far as the hormones go the Testosterone has been the best for me, and I do take a low dose of Estrogen, also. But the Testosterone helps strengthen me.

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definitely have morning stiffness. and, as dessert1st explained, it can come and go throughout the day. arthritis can be involved, and looking up dysautonomia was helpful for me. drinking lots of water can help the low blood volume, if that is an issue. it's worth trying. :) also recommended to me is the stretching everything in the morning. range of motion can help keep everything moving. but, it does 'gel' together throughout the day- a vicous circle. 'keep on moving' works best for me, despite the pain. best of luck!

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amberlilly, I am interested in what you said about having been helped by taking testosterone plus low doses estrogen. How did you come to know this is something that might help? Did you have your T level tested and found it to be low, or did you and/or your md just know it was something that might help? And if you don't mind my asking, what form do you take the T. and estrogen in? (pill, patch?) This is an area I have never explored and am planning to have a discussion with my GYN doc., so am very interested in the experiences of others who have EDS.
What I am particularly wondering is if low dose supplemental hormones might help me with my increasingly severe chronic fatigue symptoms. You mention improved "strength" and I wonder if you are also referring to stamina? That is an area I have so much trouble with...I am constantly having to sit down to "rest for a few minutes" all day long...really gets in the way of getting stuff done.

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The idea of slowly moving your joints before getting up is a great idea.

In reply to Lorriel. Lorriel I was using Estrogen before my hysterectomy, and could not tell that it helped the energy thing because I was having these severe fatigues, just sinking feeling, and could not hold up my head at times. Anyway, after my hyst. I was absolutely obcessed with finding answers because I felt like I was 80 yrs old so thru trial and error and some input from the Gyn's N.P. who was up on all this stuff, and I do mean trial and error. The first doctor though, prescribed the man's prescription in a packet as a jel and she just looked it up in her book and told me to divide it and use half a packet every other day, I think, but that is way too much, and believe me I could tell it in the intimate area. Anyway, it is not good to use too much because it affects all your lipids, and it did show on my blood test at my physical. So I found the right Gyn office and they prescribed the compound for T. and I have changed over the yrs somewhat,but I am on 1ml of 2% every day which I was on just 1% at first and I ask to go up and they did. I have always had trouble maintaining muscle strength and after the hyst. I couldn't even seem to access my muscles, excercise just wouldn't seem to take, very weird, and so that is when I decided to do the T. and I had been researching the hormones anyway and it was suggested after a hyst for several reasons bone density for one, and even though I am very small boned they are still good at age 62 and I had a ring size of 3 1/2, that is small, and i am on the low end almost to Osteopenia, but my doctor is a specialist in this area says they are good, so I do think the T. has played a part in that, and allows me to be stronger in general and just helps all around and I do not have side affects to it, and yes I do have some chin hairs, not much though, but that is a small price to pay for what it does for me. I think I started using it because of the extreme vaginal dryness and pain because the estrogen didn't seem to help much and I have problems if I use too much estrogen so I am on.05 and my pc wants me to try to take more because he says you can have more pain if you are short of estrogen, but I have had every dose you can have, and when I get too much I get the vagina from h---. so I'm staying where I am. I tried the estrogen compound and it did not work well for me, don't know why, but I just use the generic patch. Now, if I learned anything from my searches it is that everybody is different with the hormones so if you start experimenting,with them start small, and individually, at first and build up, so you will know which one is doing what and do it long enough to tell the difference. When I start skipping my synthroid (synthyroid really did help too, low dose)and or, my T, I start having those sublaxions, and I don't think it is coincidence, and it makes perfect sense that it would help, helps the muscles to hold things together. As far as testing goes, yes I was low on everything, when they took out my ovaries they took everything, don't think I make any of this from any other organs. My sister on the other hand always had plenty of T. didn't need any, she got mine, or what I was suppose to have. I think doctors dealing EDS should really consider this in their treatment, my pc was impressed that I had found this on my own, and he uses my information. He is up on everything even though he is an internist with his speciality being Ostoporousis (sp? no that's wrong) anyway, just remember it may have a different affect for you, but I finally think I am where I need to be. I have thought about trying the progesterone again, and I never knew for sure what it did because it was mixed in with the others when I started out and I just didn't get an accurate idea of what it contributed and I didn't try again for expense reasons for one, and I was doing ok with what I had. Feel free to ask anything, all the time I have spent researching this should go to good use. Oh, yeah, I am on Vyvanse which is a stimulant, but I was on the T., and Synthyroid long before Vyvanse, and it did help before I started Vyvanse, and this really helps, that was the extra boost that I needed. I wrote this fast because I suppose to be doing my house work and canning, we have a million vegetables, so please forgive my errors, and if it doesn't make sense just ask any questions you have.

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Amberlilly, thanks so much for taking the time to answer my questions. I have on + off thought that I should look into the possibility that low dose hormones might benefit me. I remember not too long ago reading on this site that someone was helped by the estratest patch which I believe includes testosterone. And also not too long ago I read that one effect of the longterm use of opiates can be low testosterone, and I have been on the fentanyl patch for 9 yrs now. I do happen to be on adderall for narcolepsy, without which I think I would be asleep more than I am awake., but even when I am awake my fatigue and lack of stamina are very limiting.

And to squirtz--I also have used your method of stretching and putting my joints thru range of motion before getting up, and this really does help decrease the pain/stiffness.
LorrieL

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I can relate to the morning pain. I take my meds before getting out of bed. Since you can't take meds, if the marijuana helps it would be worth a try! Anything to get a better quality of life is worth it for me. Tell your doc you've been reading about its benefits to your chronic pain & interested in trying it. Good luck!

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Feather 3, very interesting about the low estrogen and EDS connection; I am peri-menopausal. My GYN suggested using progesterone cream to help my headaches, I wonder if that would also help with pain....

OP, I would suggest you talk to a pain management dr, I know you mentioned that pain meds make you sick, but the dr might also know of some other treatments that may be helpful. Just a thought...

Karen

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I don't know where any of you live, without looking, but was wondering if you live in a state where you can get medical Marijauna. I live in Ga. and I don't think we have it here. The special I saw on the state where it is legal they really had a variety of things to choose from, like the strength, ones that don't make you tired etc. I mean any type you could possibly want. I think it was California.

And Lorrel, I just looked at what I wrote to you, looked like a book, sorry, no wonder I can't get anything done around here. Anyway, I'm sure I don't produce any T. after my hysterectomy or, any other hormones, they were really low when I did have them checked, and I absolutely had no sexual desire at all, I just felt dead in that respect, and actually, it was very irratating to even be touched, so I definitely need it for that if nothing else, but it really does help with my stamina, and it makes my breast pirk up, really strange, how it does that. About 3 hrs after I rub it on I can feel my breast fill out, almost like I am filling up with milk when you are breast feeding. But, I have always had an opposite reaction to things. I was interested in hearing about the estratest patch, and if my insurance would cover it like my estrogen patch, I didn't know there was one. It costs me $20.00 for my patch, and then my compound is $32.00 and it lasts almost 2 months, so that is not bad for the T. because most places it is around $60.00. I've been doing business with this Pharmacy for several yrs and it is a small personal place, but has a huge business, and am really surprised they don't go up on their prices, they just mail it to me, for less than $2.00. But it would be nice to have an 'all in one' if anyone knows anything about the estratest patch. It's probably best to start out with one hormone at a time just to see how you react to it if you have never tried it.

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Decreased estrogen and increased progesterone seem to be implicated in the pain increase of EDSers.... when I can find the article where I read that I will post it.

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