Pain Flare, Eds, Pain Management

[comfortzone]

Okay so finally my blood pressure has evened out a bit. My lows aren't for the most part too low -- only once this week did I get really faint standing and nauseated. The highs are great - only one diastolic over 100 and only 2 over 90. So I'm ringing in at some really nice numbers.

But I feel LOUSY. It started with family stress....d/t that I quit my walking for exercise. It hurts for me to walk so it's easy to not do .... yet I usually press through the walk and the after pains. But not this past weekend. Family first type of thing.

Today I went into work for 3 hours on my feet as a cook. I only took one pain pill before work. By the time work was over -- I was a train wreck with pain. A full on flare...that brought me to my knees. I have been in bed now since 5pm...it's now 10:30 pm. I've taken pain medicine -- different kinds to get it under control. What a waste of an evening. I'm supposed to be packing for a move out of state and I was laid low and able to do nothing.

WHAT causes this? For you EDS'ers out there --- Is this the norm when you have this stuff? Everything on earth has been tested and is negative - so that leaves probable nerve and muscle damage in hip area from surgery, small fiber neuropathy, and all the tendonitis's of hands, elbows and shoulders. Thank goodness I didn't have a headache or backache. The limbs were enough to have me completely beat. Is this my hypermobility syndrome pain?

Does menopause do this? Did my usual orthostatic intolerance (today was the day I got nauseaus at work and felt like I might faint) trigger pain? I wore my compression knee highs... Does not drinking enough fluids do this?

Could it be because I haven't been exercising through walking?

I'm getting really scared .... like I might not ever get over this disabling condition.... As many of you suffer POTS and such - I know you know what it's like to be frightened about things your body does -- that just don't make sense. It's crazy making. One thing gets better and then something else gets totally worse.

I think I need a very smart pain management doctor to help me -- plus to see an EDS specialist perhaps. My pain guy is great -- but wants me to try a very powerful drug that scares me to no end ... so I've refused. Good thing as I'm moving soon and it's hard to be tied to a pain doctor because of being on a powerful medicine. Has anyone tried the Arizona Pain Specialist group in Scottsdale area? They are on my list of 'to-do's' -- I need help in knowing what to do other than lay in bed and not move at all for hours after taking medicine....maybe I have to accept this? Or do I dig deeper for answers?

Right now my legs feel on fire, my feet like sharks are gnawing on them, my arms and hands feel stiff, and I'm a big wimp.

Any tips for coping?

[janiedelite]

For me, I have several types of pain. First, I have a burning skin pain that is due to the neuropathy. I do have more pain directly after exercising, but it lasts for a few hours and fades. If I lie in bed all day, then the burning skin pain is sometimes aggravated by being sedentary. I have hip and back pain due to a car accident and surgeries, and I have to walk regularly or suffer worse radicular pain, especially in my legs. Then I have headaches, coathanger pain, and other general body aches that have worsened with my POTS and that get worse if I'm fatigued, dehydrated, stressed, etc. Exercise really doesn't do much for this, and rest does seem to help a bit.

I know that stress is a HUGE trigger for my POTS pain as well as my other musculoskeletal issues. My only advice would be to keep doing what you'd normally do to take care of yourself, and hopefully you'll notice a return to your baseline pain level with time.

I agree with you that you'd benefit from talking with a doc who treats EDS patients, and maybe he has some non-pharmaceutical therapies that would help you. At least the pain doc you see right now is trying to help, but I don't blame you for being wary of the stronger meds. I was offered longer-lasting narcotics by my neurologist last summer but don't feel like my pain level is quite that constant or severe yet. Plus, I'm only 37, and I've had worsening pain over the last 15 years so I'd rather keep trying to manage by using stuff that won't cause such physical dependence. I've tried all of the non-narcotic meds for neuropathic pain control but felt the side effects weren't worth it.

[potsgirl]

About 5 months ago I started having hot flares in my feet. Gradually the pain went into my right hand, then my left, then both feet were affected. The pain has gradually become worse to the point where I can't even carry my coffee cup in the morning and this pain is constant. I have flares where I can hardly stand the pain, and I've been taking Percocet for it, which just takes the edge off. I went to a pain clinic yesterday, and although I had problems with Lyrica before, I'm giving it another shot, starting tonight.

I also saw my neurologist at Mayo/Scottsdale yesterday afternoon, and it's very likely I have small fiber neuropathy (sfn). They'll be doing testing for it and for a possible underlying cause in a couple of weeks. It tends to be progressive, and you treat the pain/symptoms. My pain bothers me at night, too. So...I try to not 'do too much' on any given day because it makes the pain worse. I try really hard to get a couple of weeks in a week, and do some ab work. I was only taking the Percocet when my pain became unbearable, but now am keeping on a small dose around the clock so my pain doesn't get too out of control.

Avoidance of things you know might make your pain worse, getting your pain under control so you can continue to get some exercise in, eating right, getting enough sleep and trying to avoid as much stress as possible helps me. Also, moist heat is good. Heating pads can also help. I would try a pain clinic if your PCP is not knowledgeable in that area. Our lives are tough enough without adding all of this pain! Do what you can to help yourself. And see if they can try to find a triggering cause to your pain, and keep a journal.

Good luck!

[sugartwin]

I have Classical-Type EDS and I'm fairly sure my pain is unrelated to my POTS. I had little pains all my life; because I was told I was normal, I assumed it was normal. Then certain joints (my hips, namely) started having pain attacks. Then little aches began elsewhere at the same time that my hip pains grew worse and more frequent.

There is no norm, as far as I know for EDS pain, except that almost all people have at least some, and as time wears on, some always become more. I wasn't sure from your post...have you already been diagnosed with EDS? Or have you just had someone observe that you're hypermobile? Either way, finding an EDS specialist is worth it. I think the percentage is something like 96% for people with EDS having pain.

I really don't buy the anti-narcotics hoopla, possibly because it was so long before anyone took medicated the severe pain that I had that not only did I not turn down the narcotics I was offered, I literally cried in thanks. Addiction is bad, but I can also say with authority that human beings were not made to be in pain day in and day out, without ceasing, except for whatever moments of sleep can be snatched.

[janiedelite]

Please know that I wasn't preaching against narcotics. I do use low doses on an as-needed basis myself. Certainly if I had to choose between functioning and taking narcotics, or not functioning because of pain, I would take what was needed to help me function. I was just trying to describe my thought processes for managing my current level of pain. I just wish that none of us had to be in this situation. Best wishes.

[issie]

Add me to the pain list and the EDS list too. I take Tramadol and Bentyl for it about every 3rd night. I try to space it out so that it will keep working when I'm to the point of not being able to take it any more. It actually helps my POTS symptoms too. I think with me the EDS and fibromylgia and osteoarthritis are all my causes. I also think that I have some sort of inflamatory process going on in my body and it is in a constant state of inflammation. I take tumeric and ginger for that also fish oils. It seems to help a little - but still it's always there. I wonder if there isn't a gentic component - my poor dad is suffering so much from the same only worse aches and pains as me. He's 30 years older than me - if it gets any worse, I don't know how I'll stand it. My dad is worse than me. He is of the old school and won't take pain meds either. I don't know how he stands it. He also has ankolysing spondlitis - all his vertabrae fuse in his back and neck - so he's real rigid and it crimps nerves etc. He also has some sort of neuropathy, unexplained that his dad also had. So - my guess is - I've inherited something there too.

[comfortzone]

You each have been helpful in your thoughtful replies. I am feeling better since I posted ~ so I'm glad of that ... but the mystery of those 'out of the blue' times that knock me down baffles me. In regards to your suggestions and comments.... I'm trying to get in to see Dr. Brad Tinkle in Cincinnati or Dr. Clair Francomano in Baltimore by years end....theres also I believe two more in the USA that are the leading docs on connective tissue disorders - I'm looking forward to that happening for sure. I was formally diagnosed with Hypermobility Syndrome - with current thinking by Dr. Tinkle and others that it's one and the same entity as EDS-HM or Ehlers Danlos Hypermobile type. This was by a genetics department at a university medical center.

Pain specialists...wow. It's hard for me to even accept that they are a part of my life now - but they have to be - so I'm happy there is such a specialty. I am going to call Mayo to see if any one of the specialists I saw would feel comfortable throwing out a name of a practice in the Phoenix/Scottsdale area where I might get in touch with them for help. There's these two young guys in practice and it's kinda weird how they host a Pain Show on video and are on local talk shows etc....way too much business hype for my taste - but while they may be over-zealous in marketing their business...if they are good at what they do - I'll bite the bullet and give 'em a try.

Stress....yes - I can tell I'm stressed because my healthy eating and exercise has gone by the wayside --- which only compounds issues. So I'll get to weight watchers now and begin againg.

If anyone wants a good easy book on EDS -- I love both of Dr. Tinkle's books - The first one on Issues and Management of Joint Hypermobility - A guide to Ehlers-Danlos Syndrome and the Hypermobility Syndrome -- and the newest one -- A Guidebook for EDS and Hypermobility Syndrome (an expanded version of the first book)....they are on Amazon and pretty much tell the story. It's helpful for me to have them nearby when I do get crazy pain times like the one night before last. They are affordable too which is good because I give them to my doctors and with the move coming up I got a couple more copies.

I do take pain pills for sure -- but we'll see if these new doctors have any tricks up their sleeeves for adding treatment modalities I don't have on board yet....

Yes to the multi-faceted aspects of pain. The small fiber neuropathy, the osteoarthritis, the arthraligias and 'itis's' everywhere....headaches and the rest ... back etc... Each respected for the disbling impacts on daily life -- each different -- but combine them all and you can be pretty sad for a time.... BUT we get pretty creative on how we deal with these things and again thankfully there are good clinicians to help make sense of it all....

Thanks everyone -- and more pain-free and reduced pain days ahead for each of you!!!