Speech problems.

Poor you Deb, I totally sympathise.  I used to be a trainer and have had to deliver to upwards of 400 people when chairing an event.  I can't find my way round the supermarket now without a map and a trolley to lean on!  I am so tired this week as we are moving house on Saturday.  My sons (22 and 23)  are being as helpful as possible which is great but atm I am the only one with a driving licence (youngest is taking his test soon) I have had to be on call when, to be honest, I probably shouldn't have been behind the wheel.  I am trying more and more to just say no, I need to rest, but there are things that just have to be done and done there and then.  Those are the times that are toughest - when you know you are making yourself ill but don't really have a choice.  I am expecting to spend at least 3 or 4 days totally incapacitated after the move.  Been taking regular rests and having lots of sleep but moving is such a stressful thing to do anyway, never mind doing it when you have M.E.  This will be the second time in two years and I swear it has to be the last.  On the bright side I am moving to a lovely duplex with period features including fireplace and cornicing.  My youngest has come back to stay with me so we had to make a move to a three bedroomed property.  I don't think they will ever leave their mum at this rate though it is much more difficult for youngsters to move out now than it ever was for me. My youngest was sharing with friends, then with a girlfriend but was never really settled while away.  Anyway, fingers crossed for the weekend that all goes smoothly.  I have been ruthless culling my belongings so in one way it has been useful.  I have also discovered some clothing with tags still on that I had forgotten about so it was like getting a present if you know what I mean.  I am now finishing off here because I don't want to use up all my energy before I even get up!  One day at a time, Deb, one day at a time.

how does it help if you don't mind my asking?

Linda

Hi Linda,

I don't know the exact physical mechanism beyond the fact that Ritalin improves transmitters in the front part of the brain and is more localized than other stimulants like Dexedrine or Modafinial in that regard (each of which have been prescribed for my CF and don't work).

There are two things that Ritalin does for me. It alleviates a general exhaustion that is both physical and mental. It is much easier for me to run or bike now. It also improves my ability to focus on what I am doing and access my memory stores. I believe that both effects are responsible for alleviating the mind blankouts and slurred speech that would regularly afflict me. (I had in fact been compelled to take medical leave from my job as a professor.) Those symptoms of CF are now gone.

I don't know if Ritalin works for all CF. My case seems to have been caused by pulmonary sarcoidosis. But having tried virtually every available therapy with no good effect, and having gotten my life back with Ritalin I am eager to help others do the same. I feel special responsibility because there is no peer reviewed research establishing that Ritalin works for CF. My GP and I discovered that it does partly because I was determined to try everything and anything to get my life back and partly because she is a children's GP and so quite familiar with the effects of Ritalin.

I hope that helps. I am taking the time to write because I have tremendous sympathy for people who endure CF for years and years. It is a devastating affliction. I feel incredibly fortunate to be a fully functioning person again.

Sam

 

Sam--Just to clarify. When you talk about CF, do you really mean CFS? Because CF (chronic fatigue) can result from many different issues, whereas CFS is a specific disease. 

My GP's working diagnosis is CFS, caused by pulmonary sarcoidosis that is no longer spreading. There are peer reviewd studies that detect a strong link between CFS and Sarc. I also checked the wiki characterization of CFS and the symptoms match what I experienced. 

So thanks for the correction, I believe I mean CFS.

Sam

Hi Sam,  thanks for all that information.  Now I just have to persuade my GP to give it a try.  Regarding the sarc, I too have it though it seems to have been less instrumental in my getting CFS.  Unusually I have skin sarcoidosis with no apparent granulomas in my lungs or elsewhere.  It is a fairly unusual disease altogether and I have known of only one other person who has it.  I appreciate your trying to help those who still suffer like I do.  After tests for everything and trial of all sorts I think my GP just sort of gave up on me and I now medicate for the symptoms and secondary ailments rather than the disease...as most of us do.  I am glad you have managed to get your life back.  I haven't been able to work since 2007 apart from a few weeks temping which knocked me back to square one.  I don't expect to get my old life back but I do wish I could get well enought to work again as I feel my brain cells wasting away daily -  I wish I could contribute but so far haven't found a way to do so.  C'est la vie, I will get there I suppose.

Hi Shreddie,

You must not give up. You will know in two days whether Ritalin works for you or not. If your GP will not experiment with off-label uses for relatively safe drugs then try one that will. CFS is so poorly understood (as is SARC) and it's effects are so devastating that it is very irresponsible for a GP to refuse to monitor  a short term experiment with drugs that are well-studied and don't have serious side-effects. People with CFS should find GPs who are aggressive and non-complacent about patients who are losing a chunk of their lives. You owe it to yourself not to give up, and so does your GP.

Best,

Sam