Pain.....what helps you?
Oddly enough I don't tend to get any respiratory die off symptoms that seem to be so common on this forum. A sore throat here and there but no runny nose, cough etc. My main issues are an increase in neurological symptoms and fatigue, and as i've mentioned before an all over deep flu-like body ache that is quite intense and unremitting. Charcoal does seem to help with the fatigue but not so much with the pain. Epsom salt baths are wonderful at night and help me get to sleep, but I still find myself waking at night and not being able to get back to sleep because of the aching, and it continues all day. Does anyone get this and have any tips? How do you manage your pain? The neural pain is obviously a different story and harder to manage....but I want to avoid taking more strong pain relief for the aching if possible. Does anyone have any suggestions? I have been avoiding ibuprofen as I have had a stomach ulcer in the past...but if it comes down to needing it I'll give it a shot. All ideas, weird and wonderful are welcome! Thanks for your help!
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Can't help much, because I never took much, but I think most people don't drink enough water with whatever they take. I have found the hard way how important it is to drink lots of water. My only thing was an Advil - which I believe is ibuprofen.
Rica
3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan In for the duration.
Kate, I never got respiratory die off symptoms either. I only got pain once and since it was thalamic pain nothing worked on it. Is ibuprofen bad for your stomach? I 5hought it was aspirin rather than ibuprofen. How about lining your stomach with milk or yoghurt when taking it?...............Sarah
A Journey through Light and Shadow
I feel for you. These are/were my symptoms for many years. I am having less and less of the overall constant pain now, but it still comes and goes. My joints hurt here and there, but it is manageable. Thankfully now it does not hurt to lie in bed like it used to and I can lift the covers without achyness and weakness. So it does get better! So I will list a few of the things I used in addition to the epsom salt baths (I put some coconut oil in the bath as well). I would also agree that flushing your system with water and vitamin C is also helpful.
A lot of my neurological pain believe it or not was thryoid and pituitary problems. You might look into getting support for that. You can take supplementsi that support your hypothalamus and pituitary. Or natural thyroid helps a lot of people with neuro pain. When you have a systemic infection nearly every part of the body stops working in the proper way, because your immunei system is working so hard to figure out what to do with it. Chronic stress (and an infection like CPNi is a major stress on the body) causes adrenal problems as well that can excacerbate the fatigue. I also took nitroglycerine. This helped for awhile (but it requires a script)
Finally, if you can try to do some deep breathing into the pain. We have a tendency to constrict our muscles and body as a way to protect ourselves from the pain, so it feels a bit counter intuitive at first. But I found that if I could add some space around the muscles they were more likely to relax.
Robiroo
Another thing that I could not live without... but I just noticed that you live in Australia, so you might have some companies that offer similar or you can contact them to see if they sell them through nutritionists and homeopathic doctors, etc. These products have been a life saver for me.
Itires cream (bioresources) for lymph fullness and achyness
Acute Rescue cream for muscle pain Apex Energetics-
also from either apex or Bioresources are drainages for the kidney, liver and lymph.
http://www.bioresourceinc.com/
http://www.apexenergetics.com/
Robiroo
Hi Kate,
I have found Omega 3 Fish oil capsules and Methyl B-12 helps me with the neural pain. It takes a few weeks to see a difference. In my case, I needed 8 grams of fish oil to help the pain.
Be especially careful with your GI track while on CAP. I learned the hard way! I try to avoid ibuprofen because of the potential stomach irritation.
Feel better,
Marianne
Misdiagnosed with RRMSi 2010. Dxi CPni and multiple viral infectionsi in 2011. Dx Autonomic Dysfunction 2012. Did Wheldon protocol for six months 2011. Currently taking Valcyte, Famvir, Equalibrant and supplementsi.
Low dose naltrexone has been a life saver for me. After only 2 doses of 1.5mg, I was able to come off my Norspan patch. In Australia, The Green Dispensary in Adelaide has the most consistent compounding. You'lll need a script.
I doubt I would be able to move around very much without this. I also sleep better and it has a slight mood enhancing effect. Nothing to be sneezed at to be sure.
CFSi 30 years/FM 12 years/ CRPS 3 years/. Previously MPi 5 years. Off everything since 05/04/2012.
Back on low dose naltrexone 1.5mg daily
.
It is better to believe than to disbelieve; in doing so, it brings everything into the realm of possibility (Einstein)
CFSi/FM (2001); 'probable' MSi; Cpni; EBVi; HHV6; Chronic sinusitis/bronchitis/allergies
It is better to believe than to disbelieve; in doing so, it brings everything into the realm of possibility (Einstein)
CFSi/FM (2001); 'probable' MSi; Cpni; EBVi; HHV6; Chronic sinusitis/bronchitis/allergies
It is better to believe than to disbelieve; in doing so, it brings everything into the realm of possibility (Einstein)
CFSi/FM (2001); 'probable' MSi; Cpni; EBVi; HHV6; Chronic sinusitis/bronchitis/allergies
I always found relaxation CDs useful for pain. After 30 minutes of lying down and listening to a calm voice talk me through a process of letting go of tension and worry, my pain level would often fall quite dramatically. I hope your motherly duties permit you to have some time to yourself every day.
Also, if you are talking to our good Brissie doctor, you could ask him about Rivotril (Clonazepam). I have found it very good for anxiety (and for pain too, because it relaxes the central nervous system). I don't know how I would have managed without it - but then I am a bit of a wimp.
Pain is horrible, any way you look at it. It causes a vicious circle. No one should have to live with unrelenting pain and you should be given all the pain relief you need.
Ladybug
FM & chronic myofascial pain 2000; Cpni; EBVi; lead poisoning; CAPi since Jan 2009; Flagyli pulses & Azi M/W/F from Mar 2009; now also Cymbalta; Rivotril; Low Dose Naltrexone; Doxyi. Pain-free and heading upwards again.
Ona very random tangent, acupuncture? Only thing that ever helped me with incessant pain and it's never been as bad since.Though the aching I get at times and to be honest I can't lie down with it, have to be up and moving my body or it drives me mad
M.S/CFSi '00, CAPi 02/12. Doxyi, Azith, Metroi, Naprox, NACi + every supp under the sun + Myhill methyl'
It is better to believe than to disbelieve; in doing so, it brings everything into the realm of possibility (Einstein)
CFSi/FM (2001); 'probable' MSi; Cpni; EBVi; HHV6; Chronic sinusitis/bronchitis/allergies
Hi Kate
I've been taking Naltrexone for about 18months. It does improve my mood as well as increase energy levels. After slowly building up on liquid version, eventually I needed 10mg x 2, so buy 50 mg tabs & chop them up.
The most cost effective source for all my meds is Riverpharmacy.ca (as in Canada). They're sourced from India. It's a reliable company with good customer service if there are any problems, which has only happened once in over 3 years of sourcing from India.
I'm in UK, so far no envelope or package has been opened by customs.
For your encouragement, I am still slowly improving.
Clare
It is better to believe than to disbelieve; in doing so, it brings everything into the realm of possibility (Einstein)
CFSi/FM (2001); 'probable' MSi; Cpni; EBVi; HHV6; Chronic sinusitis/bronchitis/allergies
I took a lot of Aleve, here and there, whenever I felt inflammationi was causing my issues.
Rarely, when I feel pressure behind my left eye, which was hit by optic neuritis and a 70% vision loss at the time of my diagnosis, I'll take the Aleve again. It always takes the pressure down and I've no stomach issues with it.
(This is all with my doctor's approval, early on. I was told Aleve was fine.)
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
How much omega-3 are you taking? It is anti-inflamatory and many feel a lot less aching with it onboard.
It is better to believe than to disbelieve; in doing so, it brings everything into the realm of possibility (Einstein)
CFSi/FM (2001); 'probable' MSi; Cpni; EBVi; HHV6; Chronic sinusitis/bronchitis/allergies
Kate 001 have you not tried low dose naltrexone?? Your wonderful Brisbane GP not complied with your request or you didn't ask? If you haven't requested a script please do. The Green Dispensary in Adelaide does a constantly reliable dose and it costs about $90 (inc postage) for 3 months and you'll get something back on your health insurance. Hopefully you get to try it and it works.
I know if I have pain at bed time, I don't sleep - simple as that.
Catch up soon
BeezNeez
CFSi 30 years/FM 12 years/ CRPS 3 years/. Previously MPi 5 years. Off everything since 05/04/2012.
Back on low dose naltrexone 1.5mg daily
.
Hi beezneez,
Yes, thankyou! My wonderful GP did prescribe me LDNi along with Cholystyramine and I am feeling much better. My quality of sleep has also improved which has lead to a greater improvement in health also.
Thank you so much for your oncern and following up.
Cheers,
Kate
It is better to believe than to disbelieve; in doing so, it brings everything into the realm of possibility (Einstein)
CFSi/FM (2001); 'probable' MSi; Cpni; EBVi; HHV6; Chronic sinusitis/bronchitis/allergies
I have lactic acid or what seems like pouring out of every fibre. All nerves seem burnt on the end. And underneath all that I have that horrible aching 24/7. It is severe and intense. Im on morphine - the smallest dose they give in a tablet. I dont like drugs but I would jump off a bridge otherwise. I see LDNi mentioned and fantastic for those it worked for. I tried it and nearly died. But I do have addisons and it is contradictory. So if you are going to do LDN it might be best to test your adrenals first. I did cholestramine but after 6 weeks I was hoping to notice just a little improvement. How long did you do it for?