could use some help please

[Jena]

good morning,

I could use some help from those of you out there who have chronic illnesses like I now do.

I've been hit suddenly the past two days with extreme pain. I've had the burning sensations before, yet they hit hard last not too long and I have coped through them.

this is not good, I was in bed last night for hours with a pain i've never experienced before, i felt as though I was giving birth thru my legs. It didn't stop till 5 a.m. same the night before.

The doctor prescribed naperson yet said it probably won't work, because my issue is nerves. I'm usually pretty hopeful as you guys know, i try to be positive. Yet I told husband last night i'm only 41 I can't live the rest of my life like this, there is no way.

i'm joining a gym today because everyone states exercise for ms is huge. i had a great day yesterday also, my eyesight was great, legs were working. It seems like i'm more in a flare up than not.

other people get a flare up twice a year. I'm lucky if i get 3 good days in a week since returning from portland.

any ideas would be greatly appreciated. I'm so desperate i'm thinking of medical marijuiana that's what my ms board says some of them and that it helps. I don't do drugs... i don't want to be loopy and in my room like a nut smoking pot to relieve pain.

it's too early on to start such things like that ya know?? We have an appointment coming up with this man who everyone raves about here in new york, he's a holistic healer, he's really expensive, yet until we get insurance we figured we would try him.

thanks alot i appreciate it. oh by the way advil, magnesium none of that works for it.

 

[exhausted]

Jena,
Let me say how sorry I am first. I don't have MS, but I do have a form of RA known as palandromic RA. It is the most painful form, however, it does not cause permanent damage; that is until the regular form sets in (This is 88% likely). I have learned that I must take my pain medications. at the first sign that a flair is coming. I have gotten really good at feeling the "shadow" of pain that lets me know. If I don't, the pain is unmanagable. Exersize helps keep the flairs down. When I first was diagnosed, the flairs were frequent and the pain was unbearable and paralizing, couldn't move the affected large joint (rather give birth it was so bad) Once I learned what I had and got management tools, I have only a few flairs a year. With most autoimmune diseases diet is a factor. I don't know what triggers MS, but its worth a look. I also saw a DO-I have taken some natural antinflamitories for awhile now. I have been able to go off the daily NSAID and only use a pain killer and steriod when a flare comes.
Pain is hard on your body and mind.You will only get worse if this is not controlled. I would try to manage this first. I went to the DO after the regular doctor. My goal was to reduce the amount of medications. Nothing he gave took the pain away enough to function. My dad went to a pain clinic as his pain was so bad. He is so much better and happier now. Drugged yes-but at least he has life quality.
As for marijuana-it is a legitimate pain reliever. It made my daughter really nice- I use to joke that I would grow it if they couldn't find something to help her! Is it legal as a medicine in your state?

When my pain was at its worse, only warm water would relieve it enough to stop me from going crazy. I also know that I can go to the emergency room or my doctor and get a shot if it is out of control.
Go back to doctor, or new one, since giving a medicine that he knows isnt going to work, sounds crazy to me-ask for pain relief ASAP. You do not have to suffer this way.

 

[Jena]

hi thanks. i wish warm water would help. i miss my bubble baths lol. warm sets me off nowadays. i'm better now just walked the dogs. i just hope tonight doesn't get insane again. it's too much on husband also.

i'm sorry to hear what you go thru. he did tell me he can give me steriods if it gets bad. yet i want to hold off on pain killers or steriods for now. i have a long road with this ya know.......

what do you do diet wise? i'm trying to change, i'm eating more fish cold water fish, i'm also adding in some gluten free products, stayinga way from dairy anything that flairs and increasing my fresh vegetables and fruits. yet with anything it takes time and patience.

remember when you were younger, and you would overdue the drinking at first i did alot as a young adult at times lol. you would sit there making deals with-god to get you to feel better?? well that was me last night. i cherish my days because their usually pain free, the nights are where the problems come in.

i'm giong to reread your post later again. i am heading to gym to sign up before it's too late. i think swimming will help me also. thanks so much for responding.

 

[Rabbit]

No advice, just sending Hugs Rabbit

 

[hearts and roses]

Big hugs Jen. My pain is much worse at night, the naproxen is not helping in terms of pain or inflammation unless I add the tramadol to the mix, sort of like a pain relief cocktail. During the day I can almost tolerate the pain, but once I lie down, it just ACHES. I find myself flexing my legs really tense just to feel the five seconds of relief when I stop tensing the muscles. For me, with my body temps running so high from the perimeno, I find that ice helps. Have you ever heard of the Chillow? It's a flat pad that you can find in most drug stores. You put water in it and the material inside keeps it chilled-no need to refresh it for months and months. Anyway, it would be a good way to cool your legs without the ice or wetness. This pillow, Chillow, is dry but cold. It was made for women who have night sweats and hot flashes. You're supposed to keep it under your pillow to keep cool. But I can place it on my legs and it helps. Does cool help?

In the meantime, I hope your dr can prescribe something to help with your pain.

 

[flutterby]

Neurontin (generic is gabapatin (sp), I think) is used for neuropathic pain. It's an older medication, in generic and probably more affordable - especially since everyone is prescribing Lyrica these days. You may need a narcotic like medication - either tramadol (which is non-narcotic, but feels like it is narcotic) or vicodin. They may or may not do much. For balances issues, things like Tai Chi are good. Also helps the mind/body connection. Steroids would certainly be helpful - and cheap.

 

[flutterby]

Naproxen and other such NSAID's are like eating candy for me. They do nothing. Vicodin only works on radiating pain, which is helpful, but it by no means takes the pain away. And I've found *nothing* to help with fatigue. Well, except steroids, but I can't take those all the time. Klonopin at night might help, too.

 

[flutterby]

I go months and months and months without good days. It sucks, it's depressing, but what are you going to do. It just is.

 

[DammitJanet]

just lost an entire long post...argh.

neurontin

you may be causing some of the pain. Dont do as much exercise.

 

[Steely]

Have you tried a really intense regime of vitamins - potassium in particular can help, as well as B-12, or a multi B, and Folic Acid which helps absorb the B vitamins.
What does your Dr suggest when you tell him the level of pain?

 

[flutterby]

Should have your Vit D levels checked, too.

 

[DammitJanet]

yeah mine were really low and we just rechecked them but havent heard back what the results are..

 

[Hound dog]

I agree. I'd asked to have the vitamin and mineral levels checked. Mine get out of whack due to the kidneys. If my B6 gets too low I have all I can do to literally keep my eyes open, let alone attempt to do anything else. Calcium/potassium issues will cause cramping and pain in the muscles and depending on levels it can be mighty painful.......not to mention dangerous. I have to watch both levels carefully, which means I have to watch what I put into my mouth as well.

Exercise is good for MS, but unless you were big into exercise before.......be careful and start out slow, build up your routine gradually. I may be wrong but I think with our family friend who has it they had a PT working with him at first to help him develop his routine and make sure he wasn't over doing it.

I understand the not wanting to be loopy thing. I hate that feeling. I also worry about medication tolerance levels. I'm not going to get better and darn it I want those medications to work when I need them most, ya know? So I avoid taking anything if I can get away with it. Which since I've built up such a high tolerance, I pretty much can. But I know when too much is too much and I'll call and ask if I need to. Because sometimes when you let severe pain go on to long it can be a *itch to get it back down to minimal levels and get some relief.

How is the diet thing going? I'll be the first to admit I though my doctor was a tad off his nut over the diet thing. But I did it because I felt so bad that I had nothing to lose. Within 2 wks there was a drastic change in both energy level and how I felt overall. So.....he wasn't so nutty afterall. lol But I DID have to pin him down and make him give me details on what I could/couldn't eat, the amounts and such in plain english. Now who would ever imagine broccoli not being good for someone?? But I have to avoid it due to the potassium, other foods due to the calcium, and others still due to the phosphorus. Let me tell you, that doesn't give you a wide range of foods to chose from. ugh I still treat myself to broccoli, but I have to watch the amount and I can't eat it very often. Tomatoes on the other hand I can eat all day long, literally, I'm supposed to eat as many as I can manage without gagging. Too bad I don't love tomatoes the way I love broccoli.

As for pot being good for pain.........I dunno. It's supposed to be good for specific types of pain I believe, not so sure how well it works outside of that range. Me it didn't do diddly for when I was trying to be a difficult child.......so I doubt highly it would do much for pain.

I hope this flare calms down soon. Try cutting down on the exercise a bit and see if that helps.

Hugs

 

[Marguerite]

Jena, get that pain under control. Major target. Next, see a pain clinic for management. Or some pain specialist somewhere. You need a regime that is safe as well as effective.

All drugs have problems. Anything that is going to have a therapeutic benefit also has a good chance of side effects. It's just the way it is. You have to find something you can tolerate, that works.

NSAIDS - if they work, that is great. Watch your blood clotting, though. They helped me a lot, then I developed sensitivity to them and can't take any of them now.

Opiates - not necessarily the big ogre you might think, although if your dose has you "feeling loopy" you're taking too much for your level of pain. You will find your dose has to creep up as you become tolerant, but at a certain point it should stabilise. Also, I'm currently cutting back on my doses a lot, after being on it for 15 years. I was on 140 mg and I'm now down to 50 mg, all since Christmas. I can go back up if I need to, but for now I'm managing.

Valium - useful, in small doses occasionally, for restless legs/crampy muscles. Don't overdo it, tolerance is an issue here too. And I find it does make me drowsy. I only ever take it at bedtime, and only then if my muscles are too twitchy to let me sleep.

Exercise - Janet is right, ease back, it could be causing the pain. Give yourself a couple of days off and observe your pain.

Another recommendation - keep a daily diary. Log your degree of disease on a scale of 1 to 10. I also log what I take and when. it comes in handy if a new symptom shows up that turns out to be medication-related. I only write a couple of lines per day (the list of medications can take up most of that). Any tests done also get logged. It means I can keep a record and not have to hold all that info in my head. Which doctor said what, when I had the relapse, what the symptoms were, how long it lasted. What I took, how I felt. All the info on paper, so I can let my brain get on with enjoying life.

And yes, you can enjoy life, even if you have a serious chronic illness. I saw my neurologist today and reminded him - I'm coming up for 27 years now. And I still don't have a satisfactory label for it. But in the early stages, things do look bleak. I remember saying that no way was I going to be able to live like this indefinitely, it was intolerable. Yet here I am, and I do get a lot out of life. I have carved out a niche for myself of sorts, and especially getting the pain under control is what brightened my outlook.

Hang in there, Jena. You adapt, you find ways to manage, and you learn. And over time, it does get easier to manage.

Marg

 

[flutterby]

After 7 months of 50,000 IU of Vitamin D a week, my Vit D is still at a 9. I'm now taking 50,000 IU a day. Bleck.

 

[Marguerite]

My last Vitamin D check was done after two weeks sunbaking in the sub-tropics. Levels normal at last!

But winter is here, and darkness. No sunbaking, body covered up in layers. Time to take Vitamin D again!

Marg