what helps with aching? (I think it's EDS pain but it's linked with my POTS- been dizzy again)

[persephone]

Hi everyone,

I've had a wobbly couple of days. I was sick for absolutely no reason straight after my breakfast yesterday- like my stomach just wouldn't compute or something! I felt really wobbly all day, had the sparkles and stuff. Still, made my class and even rode there! I couldn't ride after it though- I felt dire as the day went on.

Today has been better- I'm eating again but I've been plagued by achy joints all day. My fingers feel like they're about to snap (typing this is causing me pain, but I feel it's important to not stop doing things due to this pain...), my legs, my arms and my neck have been dead stiff- that awful fluey feeling, you know?

I hate the pain- it drains my concentration and I find it SO hard to focus. I'm going to have to work into the night again now to stay on track I know a lot of POTSies get achy pains too, so I was wondering if you guys could give me some pointers about what might help?

I'll tell you what I know about it:

*It is made much worse by cold or damp or both

*It often affects my arms and wrists- so that reading and writing become quite difficult- because the act of holding a book or pen is very sore

*It gets right into my bones

*It stops me from sitting at a desk- I feel like I have to sit on my bed (which is electric, so I can tilt the head up s I'm sort of reclining but sitting at about a 60 degree angle

*It stops me concentrating

*It makes me tired

*It makes me SAD:( because I can't control it.

I have painkillers, but to be honest, they don't really help- they make me feel so tired I get nothing done, which just makes me more stressed than the actual pain does.

Heat helps it sometimes. I would love to be able to have a hot bath, but my crappy college accommodation (yes I am still in the same UPSTAIRS flat, to whover asked the other day...stupid college) only has a shower, which is just a load of nonsense

Any ideas at all? I should say, today I made myself go on my bike to get my notes over to *AMAZING TUTOR* (you all know about her, I told you last term. The one who is the sole reason I am still in Oxford. The one who shows empathy and naus!) Anyway, once I made myself get on the bike, I was aching a lot less. And bythe time I got to the faculty library, I'd stopped aching altogether. Though within a couple of hours it was back. If I thought exercise was a simple answer, I would do it. But sometimes this pain leaves me so exhausted I can't really do anything else, you know?

If you have experienced similar pain, and have found anything at all that helps, please let me know.

Thanks everyone

[Wufflebear]

Hello!!

Yep, I get it too. It is like the flu without the flu. I have put a plug on the shower drain and laid down. A plastic bag strategically placed works... I usually put a big towel down and laid on that too...I did not like the idea of laying down where other peoples feet had been. But I have to keep the air cool so the heat does not bother me...If it isn't one thing it is another...lol

Excersize can help me too sometimes for a little bit, but when I am like that I find it I am even worse off after wards. I take 2 ibuprofin and some licorice root (just discovered it) and it seems take the edge off a little. But I have not had a chance to try it on a really bad day yet...Just bought the stuff a day ago...

Hope it lightens up soon for you...

[MightyMouse]

As someone with EDS, I will share with you all that helps me:

exercise as prescribed by my physical therapist who is familiar with hypermobility

flexeril-a muscle relaxant

oxycontin-a pain medication (I'm allergic to some other pain meds, so this is very strong, but I'm not allergic)

ice or heat

sleep

a warm bath in the am if I'm really sore--but not so long that I'll get really POTSy

Not a long list--I know. I've tried everything else I can think of from accupuncture to herbs. As far as the EDS pain is concerned, only the above items helped me.

Hope you feel better. Nina

[Guest Mary from OH]

What you're describing also sounds VERY MUCH like what we call fibromyalgia here in the States. Any anti-inflammatory would be helpful along with a muscle relaxant like Nina suggested. If you have a "rice sock" you can heat it in the microwave. They make them with and without herbs. If you don't have one, you can eaily make one.

Take a long (white) "tube sock". Fill it with (cheap) rice. Add herbs that you enjoy (ex. lavendar, chamomile). Tie the other end of the tube sock shut in a knot (or you can sew it, rubber band it, etc.). Microwave it about 2 minutes (depending on your microwave). It will hold the heat for quite a while. Put on your aches/pains. Enjoy. Repeat....

My best to you!

[persephone]

What you're describing also sounds VERY MUCH like what we call fibromyalgia here in the States. Any anti-inflammatory would be helpful along with a muscle relaxant like Nina suggested. If you have a "rice sock" you can heat it in the microwave. They make them with and without herbs. If you don't have one, you can eaily make one.

Take a long (white) "tube sock". Fill it with (cheap) rice. Add herbs that you enjoy (ex. lavendar, chamomile). Tie the other end of the tube sock shut in a knot (or you can sew it, rubber band it, etc.). Microwave it about 2 minutes (depending on your microwave). It will hold the heat for quite a while. Put on your aches/pains. Enjoy. Repeat....

My best to you!

THanks! Funnily enough, my mum who also has EDS has just been diagnosed with Fibromyalgia by a rheumatologist after 40 years plus of inexplicable joint pain. I've never been to see anyone who could diagnose it though I'm sure I may have it too- our symptoms are pretty similar. Yeah, mum and I both use rice socks! thanks for the suggestion tho!

Kxx

[MightyMouse]

You can toss some herbs in with the rice--like rosemary or lavendar--and then it's a nice heating pad and smells great too.

I got the dx of CFS and fibro years and years before they finally figured out I had POTS and NCS...and then only a few years later, EDS hypermobility type.

Nina

[persephone]

if i try muscle relaxants (which might be really good, as sometimes my muscles do seem to just seize up- for ages i've been telling people it's as if i'm the tin man in the wizard of oz!) then will they make me dopey or make it harder for me to write/hold a pen and study?

may sound daft, but i need to know. thanks everyone who has replied so far

[MightyMouse]

I only take muscle relaxants at night unless I'm not going to be doing much during the daytime. Yes, some of them can make you feel dopey. I use flexeril, which when it's really terrible, I can take during the day without problems and go to work--I do feel a bit more sluggish, but it can make me functional on an otherwise nonfunctional day. I've also had norflex, which is a newer relative to flexeril. For me, it seems the same.

My suggestion would be to only take it at a point in time when you're not committed to doing much and can follow with a full night of sleep and low demand day the next day in case you have side effects.

Nina

[sally]

Hi

With EDS, personally, I would stay away from the muscle relaxants, ( unless your having spasms at the time) , due to the laxed muscles/tendons that EDSers have a problem with anyway that are located around the joints, you don't want more relaxed muscles on top of already laxed muscles. (lack of support for joints)

What you are describing could it be contributed to joint stiffness rather than muscles?

Most EDSers have chronic multiple joint pain from what I've read and some are more severe than others. Weather can play a part in the pain or make worse for some reason. I believe there are about 50% of the people who have chronic pain with this disorder take a narcotic type drug of some kind to help the pain level but there are also other alternative methods to help make the pain more tolerable as well.

Recommended are finding a good physical therapist who aware of EDS and build up stronger muscle around the joints. (helps the most)

Some use Chiropractors for re-alignment of joints and vertebra....some say it helps some say not. (we found this helpful although very temporary)

Acupuncture - helps with muscles and pain level to relax. (we found this helpful although temporary)

Splinting for different joints for walking or low impact exercise. Also ring splints for aid in writing etc.

Tens Unit - applied for pain

Warm bath or heat pads on joints

Relaxation methods to help focus mind off the pain.

Personally NSAIDs or any other type pain reliever does not touch the pain in our case. Herbal or MSM did not help in our case.

Pain is described like a burning ache within the bone/joint its self - if pain is located in the knee can feel like the knee cap is exploding out EDS does not cause warmth to joints or swelling to joints unless there has been an injury that has occurred.

I think it is a personal choice to take narcotic medication, it can help alot of people but sometimes it can cause a whole host of difficulties itself depending on the medication or dosage. If you choose to take pain medications I would recommend finding a very good pain management doctor that understands longevity and will be practicing with you quite a while because just because one physician agrees to give narcotic medications for pain management doesn't mean another physician will. I have seen people stuck in between the two situations and they end up hurting and very frustrated and then are labeled (which is a shame). Some people also use Neurotin but I'm not sure how well it works plus I believe that the body gets accustom to it and you have to continually up the dosage. Some people take antidepressants that seem to help with the pain as well.

I think it is a varied method of treatments that seem to help people, it differs with each person and no regimen that works for one person is guaranteed to help another.

[MightyMouse]

I have to agree Sally, it's a double edged sword when using muscle relaxants. I have too many trigger point knots to count--all my large muscles and ligaments are too lax, and all the supporting muscles are balled up in knots.

I did forget to mention that my PT's trigger point therapy and neural stretches REALLY helped me. The help is typically shortlived--a day or too--but the break from the pain is pure bliss.

Nina

[Richland acres]

I too have this pain and I have had fibromyalgia for 22 years. I do feel better after a nice warm soak in the tub, but the best relief I get is from my pain medications. I am on ultram/ tramadole for the pain and it does not dope me up or leave me sleepy. I also take Nortriptlyn at night this helps a lot with pain but also knocks me out so i can sleep. Maybe your doctor can find some thing to help you better.

Best of luck,

Brenda

[sally]

Nina just made an excellent point. About breaking the pain cycle. Whether it is through massage therapy/PT or medications or just a hot bath it is important to try to break that pain cycle when possible. I think when the pain is too intense it can completely drain you and then cause lack of sleep which in turn make the pain level rise or stay longer. It is a continual cycle so it's important to find what works best for you to give you relief. A good restful sleep is a big help to restore things as well which seems to be hard to come by for alot of people with dysautonomia and / or EDS. Good luck and well wishes sent your way.

here's a good link for information about chronic pain..

http://www.theacpa.org/index.asp

[Guest CyberPixie]

I have EDS and Fybro REALLY bad! I am in constant severe pain and extremely stiff. I find using pure essential lavender oil, rubbed neat everywhere helps with pain and stiffness. Heating up wheat bags helps. I also use tubigrips on my wrists, gives it just enough support to stop the pain.

I also have chiropractic treatment which gives some relief.

I take Tylex and have done for 10yrs but it doesnt work anymore as my body's too used to it. Just about to ask GP for something else. Though not sure what (cant take NSAIDS) very worried about my breathing getting worse from pain meds. I tried tramadol and absolutely hated it plus it affected my breathing.

I thought about muscle relaxants but again worried they'll affect the breathing.

The slighest stress affects my joints and muscles very badly so it's important to keep stress levels down. I use hypnosis CD's. I also find morning and night some gentle excercise helps, such as shrugging shoulders up and down, gentl;y putting your ear to your shoulder and back again etc.

I also use a Babylis Shiatsu Massager (from argo's for about ?30) that helps loosen tight muscles. In my case stress = tight muscles = subluxing the joints.

I find a firm bed makes things worse and so does those memory foam mattresses. Much better one of those cheap layeeze beds with not many springs in, so it gives a lot, reducing pressure points. I alos have a feather bed mattress topper from Northern Nights (from QVC) absolute bliss! It's like sleeping on a cloud! I also use a big body pillow in the day when in bed. It's not the usual body pillow it's shaped in a huge V (not one of those v shaped pillows for sitting up in bed either).

I use a book chair (looks lke a mini deckchair) to rest books and magazines on in bed so my weak achy arms and hands don't have to hold it.

Hope this helps.

Edited January 21, 2006 by CyberPixie

[Guest dionna]

i eat neurotin and motrin with lots of water and sleep. i am excercise in tolerante.

Edited January 27, 2006 by MightyMouse

[Evie]

Hi, I just found this page and thought it may help people. I realise it may not fit in this thread exactly but it was the best fit i could make. It just discusses some supliments that can help with pain/fibromyalgia:

http://aww.ninemsn.com.au/article.aspx?id=...e=naturalhealth

Fibromyalgia is characterised by fatigue and pain in the tissues of the muscles, ligaments, and tendons. The exact cause isn't known, although contributing factors are thought to include infections, rheumatic diseases, nerve, hormonal or brain abnormalities, and psychological stress or trauma. While there is no cure, there is a lot you can do to help repair tissues and feel better:

Magnesium

Magnesium deficiency has been associated with muscle pain, so supplementation can be useful.

Ginkgo bilboa

According to a study published in The Journal of International Medical Research, taking 200mg of this herbal extract daily reduced pain in over 60 percent of fibromyalgia patients.

Essential fatty acids

Taking fish, flaxseed and/or evening primrose oil boosts production of anti-inflammatory prostaglandins.

Ginger

A study published in Medical Hypotheses found that taking 1000mg of powdered ginger daily reduced muscle pain.

Massage, acupuncture, and regular physical exercise have all been shown to improve the health of patients with fibromyalgia. It is also worth considering the mind-body connection: hypnotherapy and related techniques allow patients to confront past traumas and negative emotions that may have triggered their pain. Visit www.atms.com.au to find a practitioner near you.

[kmpower]

If warmth and exercise helps, what they have in common is to move the lymphatic fluid. You may be dehydrated when it is worse, thickening the lymph. Cold air holds much less moisture and you lose more moisture with the breath.

Can you rebound or bounce at all? Just moving a little on one of those big exercise balls moves the lymph. I can do it even if I am tired and it works out kinks and aches.

Massage also moves lymphatic fluid.

The good supplements have been mentioned.

I hope things improve for you.