Hey everyone…still having the On probs in both eyes…but managed to get to see a gp today…
She seemed as bit impatient with me but tried to explain how I have been re tiredness, my arms etc…and last few days very tender in both arms/neck along collar bones and muscles.stifness in neck.and hips first thing in morning…still loss of strength in both arms and am worreid as my good leg is now getting joltty nerve pain and gave way on me yesterday when i was doing my standing for a few mins(didnnt tell her that though)…My temp is normal…had probs raising both arms out to sides to front or above my head…and muscles were shaking when doing this…
She cant say if all this is related to my ON probs( I didnt ask her if it was)…she thinks I could have a virus…(?) but ihas ordered blood tests but cant get an appt for these to be done till next tues…CRP, FBC GL(fasting) TSH UE she expects the CRP to be elevated due to the ON. She wasnt confident to advise re pain relief for ON or self management and asked what the eye neuros advised…I said they hadnt advised except not to drive…! Doesnt look like a letter has been sent from eye neuros to gp re mri scan results as yet as she checked.
Bit fed up now…just want to be ok again…am pretty independant but have asked social services for an assesment for help at home etc until my eyes improve…as am struggling to get the basics done at home…so have geven in on that…lol
after all the trouble Ive had with my gp, all I can advice is be a pushy pain in the a***, push to get the medication you need now, i was fobbed off for 3 yrs with the wrong meds, that went against me at the tribunal, if you feel the need phone eye neuro keep a record , date etc ask them for advice, Ive had a raised esr level for 3 yrs was never told why, social services should be a great help , ask them if they can provide the services of a nurse practitioner, they can bring all your symptoms together to get you the help you need, good luck and dont be fobbed off, its you life going down tne pan not theirs
The best thing for ON pain is probably a neuropathic painkiller. I’m not sure which one is best, but it certainly shouldn’t be beyond your GP to find out! I hope Social Services come through soon (make sure and chase them and don’t be heroic - make sure they understand that you need help asap). Karen x
Hi Karen…thanks re neuropathic pain killer…am already on pregabalin 75mg at night for neuropathic pain elsewhere(back/neck and leg)…but she made no suggestions to increasee this dose to daytime…also.it does make my mouth very dry…yuk… also on solpodol 30/100 one or two tabs twice daily…all I can say is am away with the fairies on that…lol …will ring surgery tomorrow to clarify dosage and not sure if I can take pregabalin with solpodol at same time? I used to be on tramadol but it did nothing re pain and naproxin/diclophenac( was on that for many years…and no one said I shouldnt have been on that one long term…) I had a meds review last year by a consultant physio.
oooh ps Karen…yep I shall be chasing social services…like a terrier with a ball…lol I know I have given advice to others on here…but when it comes to me…its slightly harder …so yes being proactive now…so litle energy at present…plus the pain in arms…is making things harder…esp as I use the wheelie all the time aswwell…x
Hi karen…thnaks for that re pregabalin…I agree the dose I am on is not very high at all and not affective either…wel i dont think…lol…certainly worth getting my gp to call me and discuss upping the dose at night and during the day and see how I go…ahh ok re codene…though it was the culprit…lol I personally woudl rather stick to one type of med…and see what happens…maybe add something else if needs be…can I ask is there anything that can help with the fatigue I am having…? I know I dont have a dx…something else to add to the list of questions for gp…!! lol theyll love me am sure…haha…:_) I have to say coffee is not doing it at all…but am taking multi vits, Q10, slow release vit c, MSM,bee pollen tabs and will order some aloe juice drink too soon.
You could try vitamin D3. If you are deficient, it can cause muscle & bone pain as well as fatigue and other things. It is implicated in all sorts of conditions, including MS, so it would be a sensible move anyway.
There are two meds often prescribed for MS fatigue: amantadine and modafinil. There has been a clamp down on modafinil as it’s actually for narcolepsy and is expensive, so it’s really hard to get a prescription now unless you’re already on it. Amantadine (which is for Parkinson’s Disease) is still available though (as far as I know!). Unfortunately, neither works for everyone.
Exercise helps fatigue. Don’t do it when you are really fatigued though - when you’re like that, it’s usually best to rest.
Sleeping well at night can make a massive difference, but a lot of us nap during the day which throws our sleep cycles out and a lot also have symptoms that keep us awake during the night. Getting into a decent sleep cycle can make a big difference though. Some meds can have a dual effect, e.g. amitriptyline is a neuropathic painkiller which makes most people very drowsy - so taking it in the evening can act as a painkiller and a sleeping pill.
There is a booklet on here about Fatigue and there will also be one on the MS Trust website. Why not have a read of them - you may get some good ideas.
Hi Karen…thnaks so much for all your advice…youre a true gem…
Ok will look into the amantadine…
absolutey agree on the excecise aspect and theres no doubt I sleep better on the days I am able to to workout…just not been up to that much …so there is a time to skip it! Getting to sleep is not a problem if my leg is not junping…stabbing pain…and usually a pliiow under my knees helps…but I am a light sleeper so tend to wake early hrs…ie bin men…noisy magpies arguing outside my window etc…lol I put a relaxion cd on every night… Am tring to resist the afternoon sleep…even though i am exhausted mentally and physically…and with my eyes at present I just want to close them…