Joint/muscle Pain

[Guest CyberPixie]

Now I've always had this of course due to EDS and I know POTS can cause some pain but last 6mths or so it's got much worse. The slightest anxiety or stress and I am in agony all over. To the point where I could throw up, can't eat,c an't sleep and want to scream with the pain.

I've told my Dr and specialist but no one gives a hoot, don't care, don't want to help and basically said I just have to get on with it.

Anyone else with the same?

[laila]

I too have been dx with fibromyalgia, chronic fatigue, and pots, and my rheumatologist has been very helpful with pain and sleep issues...he first tried a muscle relaxant, flexeril, but it gave me weird nightmares and such, so then he gave me tramadol which I take prn for really achy legs. I usually take only one, and not everyday. I am also on xanax so I don't want to be "addicted" to to much but sometimes you gotta have relief. There are no pair of shoes or slippers I can even stand to have on my feet. You should look for a good rheumalogist or pain management doctor. If you have fibromyalgia that is necessary! As well as your other issues. Good Luck!

[Guest CyberPixie]

I had a good rheumatologist but he retired. I've tried tramadol in the past but didnt like the feeling it gave me as if I wasnt here and that I didnt care about anything, it also gave me breathing problems. My Dr says I'm on the strongest painkiller, the next thing is morphine and she doesnt want to give me that, don't really want it either!

I can't take anti-inflammitories as I have gastritis.

I've tried heat packs, cold packs, reflexology, acupuncture, chiropractic, shiatsu massage, magnet therapy, lavender oil, hypnosis. They help somewhat but sometimes the pain is so bad nothing touches it.

[Guest sonotech]

I think that we should take advantage of modern medicine, and that EVERYONE deserves pain relief. Unfortunately, docs are always under the "scope" when it comes to prescribing pain meds, so a good PAIN MANAGEMENT doc can usually help more.

You (and only you) know what kind of pain you are in, so dont listen to those docs who "dismiss" it.

Dont give up until you find a doc who will take your pain SERIOUSLY and help you, cuz there are some out there, and you SHOULD NOT feel ashamed taking whatever you need to help you quality of life!!!

LAURA

[laila]

Oh I guess the Tylex must be the UK version of something like percocet orTylenol with Codeine here in the US. You poor thing. I have a friend with bad back problems and she has been on morphine things that look like lollipops. She is very hyper and it didn't seem to slow her down at all. More energy than me of course!

[Ernie]

Hi,

I have a PT and a massage therapist.

[dizzygirl]

hmm i have sever pain issues.. of an unknown origin.. and ahve had it since i was about 11-12 yrs old.. and I'm 24 now... Um i have tried everything under the sun to help with pain.. and what i have found that helps the most.. is a combo dose of an anti nausea med ( b/c the pain is so severe that you want to puke your guts up at times).. and torodol.. given directly into an IV// the pain med demerol also helps temporarily..

and sometimes these meds help w/ pain.. Um i spoke with somebody recently who experiences exactly that same kind of mind blowing pain that i have.. and she suggested using aspecreme for pain.. and regualr old Motrin...

I have not tried these yet but thought that i would throw them out there and see if they might help you....

i hope that you get some apin relief soon dear

take care

linda

[kmpower]

I would like to recommend a book by Sherry Rogers, Pain Free in Six Weeks. She is an MD who overcame, I think she said, 25 diagnoses. She is a prolific writer and knows a lot. What she says in this book is that we are all, of course, different, but more people are helped by getting off the nightshade foods than any one other thing. So start with that. Many others are helped by fixing the gut (see the other thread mentioning the 4R program), so do that if the nightshade elimination doesn't work.

She gives a list of things to try, in the order of things most likely to help. She says that even serious pain can get better and gives lots of encouragement.

I have given that book to lots and lots of friends and family members. I have seen some real miracles. Different things worked for different people.

Best wishes for improvement.

OLL

[briarrose]

I've said this in many of my posts but I'm going to say it again

I suffered with extreme joint pain for over 10 years. I tried so many different kinds of drugs it was incredible, including every drug that's been listed on your post with the exception of Morphine.

I saw numerous rheumatologists, endocrinologist, neurologist, my primary, ect. I live in Oregon and even travelled to New YorK City to see a pain specialist there. None of them were able to help.

However, it was Dr. Grubb that figured out my joint/muscle/bone pain issues. He prescribed Neurontin for my pain issues and I have to tell you that I was Skeptical at best. I know Neurontin to be a anti-seizure medication and a pain medication that only works for diabetics. I really thought he was off base. Boy was I wrong! It's been the best medication that I've ever taken. I take such a low dosage that I don't have side effects and it's been the only thing that has helped the pain. It's better than Percocet, as that medication leaves you high feeling, tired and doesn't completely take the pain away.

[Richland acres]

I to have a lot of pain, have had fibromyalgia diagnosis for 20 years, but the more recent pain is not like the fibro at all, its different. I am having muscle spams and hot burning pain in the joints and then electrical sensations now and then, they are looking into ms for me. What type of pain are you having? Burning, cramping etc?

Hope it soon subsides, pain is not any fun for us!

Brenda

[Laura]

Hi girls,

I have really sore joints and achey muscles as well since developing pots. However, I did have an increased period of terribly sore joints, sore and burning muscles while taking pindolol. At each appointment I would say to the doctor that I felt like it was worsening and really was having pain and discomfort. After a while he decided to do bloodwork ( checking the creatinine kinase - CK- levels) to check for muscle breakdown. It turned out to be elevated. I stopped the pindolol on dr's order and the levels were re-checked later and had gone back to normal. He said that this was not normally a side effect of the pindolol and had not heard of it occuring before, but as the CK levels went back to normal once the medication was ceased, he assumed that would be the cause.

Just wanted to add that little bit of info incase it would be helpful to anyone else. Laura

[Guest CyberPixie]

It's like a deep aching penetrating pain.

[deeplyset]

I know this may sound kinda "silly". But it is working for me. My joints (knees, ankles, hips, etc.) were hurting really but and I talk to my massage therapist about it. He is very knowlegable about a lot of different things but what I like most about him is that he looks at the body as a whole and what you are doing not just at syptoms and "piecemeal" (if that makes since). Anyway. When I told him about what was going on he was like "well, the answers simple your doing to much."

I was frustrated at first because I'm like everyone else is always telling how I'm not doing enough and how I need to exercise. I just get discouraged and frustrated.

He went on to say that was true to but with POTS because it's up and down so much that I lose muscle mass and muscle support the bones and joints and if I tried to do exercises, etc. without proper muscle mass to support the bone and joints (because the muscles have deterianted) that the bone and joints grind and press on eachother causing pain.

Therefore his solutions was take it down a notch. Go slower and at a smaller pace. First BUILD the muscles that you are trying to get your body to support you (like those you lost when I couldn't stand and walk) then when I go back to doing those activity I would be in so much pain.

And he's right. I hurt so much less. My body was trying to tell me I was not going about doing it the right way. It's just hard because IT'S SO SLOW and SO FRUSTRATING... I don't know if this will help but I hope so...

Rachel

[deeplyset]

The first thing I did was just STOP. And rest. I am able to stop just about everything and so I did. Because I was in so much pain I to had stop sleeping as well (well other POTS issue kept me up to but the pain made it way worst).

So, after about 2 and 1/2 weeks of just resting my body doesn't have all the joint pain. And I'm sleeping way better. Which is turn is helping. I did a couple other things too but I'm going to post some new topics about those.

I'm now in the process of slowing increase activity to BLUID MUSCLE. That will support my joints and bones so I can do the activity I want to do (ie walk and stand) activity I'm capable of health wise (pots) but physicaly deteriated so can't without pain unless I build the muscle back first.