Pip

[Prady123]

Morning everybody, I have to go and see if I can get pip today, I am struggling to walk now and my stick doesn't really help but got to use it all the time, the pain is terrible to bare I hope my consultant comes up with some plan tomorrow I can't take it anymore and they won't give me stronger meds bugger it is the CMT.

[Pam49]

I know how you feel, my gp is exactly the same in not giving me better meds. I think its because they dont really kbow much about CMT its only us sufferers that want to find out more. Hope your PIP interview goes well

Pam

[Morllyn in reply to Pam49]

Ask you doctor about Neurontin, that is what my son was giving for his neurological pain and he says that it works well.

[Pam49 in reply to Morllyn]

Hi Morilyn

Isnt that also known as gabapentin? If so i have just had my dosage increased to 600mg 3times a day, it might help. I have been taking 400mg 3 times a day for years now, trouble is i need the pain relief but your body gets used to it after so long and its not as effective as it was at the start of taking it.

[Morllyn in reply to Pam49]

Yes Pam49 it is gabapentin. I know what you mean about having to up it.

I have MS, (my husband and son have CMT) and have neurological pain. I have been using Tramadol to help with it for years and have not had to up it, thankfully. This past September I had a new attack and now have muscle cramps all over. The doctor put me on Lyrica and it helped the cramping but also I have notice that I am needing less of the Tramadol.

[Pam49 in reply to Morllyn]

Hi

I take tramadol too along with other pain medication, you would think i would be away with the fairies but alas no! I take so much and have done for years that i dont think it works aswell anymore.

Pam

[Morllyn in reply to Pam49]

My MS doctor put ne on Lyrica recently and it works really well. Maybe you can ask about that one Pam49 .

[SallyH_NCCMT in reply to Morllyn]

I take a 24hr extended release Tramadol for pain, gabapentin (neurotin) and Cymbalta. The three together work enough to keep the burning pain at a manageable level. Unfortunately, it makes me tired and foggy but it sure is better than enduring that pain!

[shohn_desoto]

On the plus side although Pip assessors, like GPs, know little or nothing, and often less than nothing about CMT - it is a named an well documented condition, and to a great extent they have to take your word for it. My own CMT isn't yet as troublesome as yours (the pain is still low, I'm mostly mobile etc)...but I got through the assessment with out contention and retained the same rates I had had on DLA...

Best wishes, S.

[missspain in reply to shohn_desoto]

hi ,i just wondered if you had a letter from your g.p. or consultant.to send with all the paper work when you filled the p.i.p. form in.i have c.m.t. really badly now,no help from my g.p. he and others iv seen know nothing about c.m.t.my balance is nill,can't go out alone.i know it won't be long before i have forms to change from d.l.a. to p.i.p.im dreading it.what a worry.im so pleased you retained your benefit.

all the best,mo

[spabbygirl]

That is reassuring shown_desoto I guess they do have to take our word. Don't we get seen by a dr who knows about neurological issues? I'm sure I read that somewhere. I'm interested to know what the stronger meds are like, I've been on Lofepramine for years and it only takes the edge off. When I've asked about stronger stuff, I suppose Gabapentin etc. I've been told it can make you away with the fairies (love that phrase!) So it doesn't always then? GP's can be lousy, I have been having problems with my vocal chords & GP said its nothing to do with CMT. Saw consultant last night & he said possibly, but I need more tests to exclude other things before he can be sure.

[shohn_desoto]

In theory we get seen by a Dr who knows about neurological issues...if a Dr is available, they seem to play fast and loose with these guidelines, in fact I can no longer find any DWP documentation that states that this is a legal requirement with either PIP or ESA...I didn't bother asking my assessor's qualifications as they're always reluctant to tell you, preferring to say the they are 'qualified healthcare professionals', this was a strategic decision on my part.The assessment exists possibly deliberately in a grey area anyway, it is both a medical and not a medical. If the assessment had not gone well then I would've requested the assessors full qualifications as well as the qualifications of the person who reviewed the paperwork. As it was I was dealt with as fairly as could be with in a flawed system...the assessor was very attentive, reasonable, and spent an hour longer with me than was the allotted time.

[Tandarts]

Tandarts,..... I take 2x 150mg and 1x 75mg Lyrica ( Pregabaline) per day.

Find that the periferal neuropathy attacks don't happen that often.

I have CMT type 1(a).

My Tens machine travels everywhere with me nevertheless. Hope that can help

[oliverdeb in reply to Tandarts]

hello Tandarts, i was thinking of buying a tens machine , because of my CMT, what do you think about it ? thus it help your cause ? some say they are good some say makes no difference . thank you