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going out of my mind with pain

Hi Guys

I thought I would post a note to see if anyone can help me i was diagnosed with ms last april but they are still unsure of which one I have I think they are leaning more towards primary progressive as I have not got any better just worse, I am 23 year old and they said that its very unusual to have the ppms at my age, I have had to give my job because I can hardly walk and have constant pain mainly down my right hand side. I use to live in Scarborough but moved from there and the specialist there and the ms nurse there were useless was like they didnt care at the fact no medication has helped me and they didnt seem to interested in me either, its a different story if you have relapsing then they want to no you. So now I live near middlesborough and guess how long I have to wait in agony until 11th June, it is so unfair they do not understand how much pain we go through, and the GPS well there another joke, av tried so many tablets and none of them have even touched my pain it feels like I am on my own and that they dont want to help they couldnt care less, which makes me sick to my stomach why work for the nhs if there not willing to help, not enough people no about ms, at times I feel like ending my own life it gets so bad. Sorry to go on.

Sherrie

xx

Hi Sherrie, I'm so sorry to hear what you're going through. There is nothing in this world worse than pain!!! I'm really sorry that the GP hasn't been able to give you something to help... though admittedly there's not a whole lot they can do for ppms, there are some drugs that can help with pain.

Have you tried Amitriptyline, Gabapentin, Pregabalin or Topamax? All of these drugs can help with nerve pain. Amitripyline is an antidepressant but in low doses it's used for nerve pain. The others are epileptic drugs, but the same, in low doses are used for nerve pain.

Why don't you write these down (or print this off) and go to GP and ask if you can have one of these? It's more likely that the GP would be willing to prescribe Amitriptyline as this is a drug they prescribe anyway for depression.

Is there anyone at all that could go to the GP with you? I think it sometimes helps if someone else is there. If you're anything like me, it's difficult to get across just how badly things are and how you can't stand it any more. A friend or family member? 

11th June does seem like an age away when you're in agony but hang on in there. There ARE drugs that can help the pain and also with MS the pain can sometimes ease up on its own. I was in agony with pain in my upper arm for ages and it went away and never came back. I really hope that things get better for you soon. You are very young to have ppms.

Come on here whenever you can. It really helps to have the support and know that other people know what you're going through... and go on Everyday Living as well. It's a busier board and MS is MS whatever type it is. While you're at it, why don't you take a look at the Young People board. 

All the best and I really hope the GP can give you something that helps. Stay in touch.

Pat xx

Hi Sherrie,

Sorry you are in a lot of pain just now.

The only thing i can suggest is that you start complaning.

Who is the appointment with,your new Doc,as the 11th June is a long wait.

Who to MS nurse,if you have one,Nuro,local MS society branch,local paper,your Mp,your local PCT,and any one else that will listen.

As Pat says there is help out there you just half to give it a kick up the behind,to make them listen.

Let us know how you get on.

Take Care.

Chris.

Hi Sherrie

If u have tried all the meds have u tried marjuana its suppose to help with pain !!

 

Hi Sherrie

If u have tried all the meds have u tried marjuana its suppose to help with pain !!

 

Hi Sherrie, I do feel for you. I was in agony with nerve pain, at the back of my thighs and bottom cheeks. it felt like sitting on jagged broken glass.

Then I was put on amitriptyline. I began at 25mg and got up to 100mg before it zapped the pain.

I don`t care if those doses are for depression, as they sure killed that pain.

i now take 75mg every night. The neuro tried to get me down to 50mg and WOW! the pain was back with a vengeance!

Have you tired it?

Good luck.

luv Pollx 

Hi

I have tried Amitriptyline, Gabapentin, Pregabalin, carbamazepine, ibuprofen, paracetamol, morphine and oxycodone/naloxone thats all i can think off top of my head when i was first diagnosed they gave me steriod drip but that didnt work either, the ms nurse i use to have from scarborough was called liz but basically told me I had to sort out getting referred to another one and nuro. So atm i am in contact with no one until june except my gp but they arent very clued up to ms. 

yes i take 75mg every night and 25mg in morning but all it does is lets me sleep, well most of the time, my pain just seems to get worse, i can walk for about 10minutes and then thats it i am in agony for the rest of the day

Sherrie,

          l have had spms for 30yrs - never did have the RR type. l have never seen a MS nurse - not one in my area - and l went 26yrs before l saw a neuro [who said she did not know much about ms]. You have to becomes your own expert.

l joined this site just over 3yrs ago. The first thing l learnt was about LDN. - l soon started on it after reading about it on the ldnresearchtrust - For me its been brilliant - and l shall always be forever grateful to the kind folk on here who introduced me to it. Far less pain/fatigue/brain fog - in fact l feel so alive and positive - l know its no cure - but it certainly makes me feel l can cope with all the ms symptoms. Many people take it just so that they can get control back of their bladders.

l also take a high-dose vitamin d3 - l take 15.000ius daily - this is also good for pain relief. And l take magnesium - another supplement that helps with leg-pain/cramps/spasticity.   And l use Sativex spray - l get it on prescription from my GP.

lt is licensed for ms use - not many of the other usual meds are.

Well this is what l take - and for me it works well.

l do use exercise machines - eliptical trainer - power-plate  - and l try not to sit down for more then a few minutes - l am better if l keep on the go. l even stand to use my lap-top - and keep moving my legs all the time. l can only walk by holding onto the worktops - furniture - which is why l feel l need to keep my muscles moving -  l also go to yoga classes.

l have one of those fitness balls - which l sometimes sit on to watch the telly. lt makes your core-muscles work whilst you are trying to balance on it. You can feel your pelvis tilting back and forth.

lts now 5.50pm - and l haven't sat down yet - since getting out of bed this morning.

Samantha suggests shiatsu - something l haven't tried  - but l will look into it.

ls there a MS Therapy Centre near you - they offer lots of alternative treatments. Alas the nearest one to me is about 40 miles away - so out of the question.

All the best to you

Frances. 

Hi Sherrie

                 I do hope you are having a better day, I take Baclofen for my legs l allso take Calcium & Magnesium they help a lot for me l know when l have missed them. I go to our drop in  MS Centre once a week and have a treatment on my feet & legs that helps. I allso went swimming don t no if that helped but l did enjoyed it. we are here for a chat  and one of us may help get on to your gp tall them to put you in touch that does know about ms

      Take care Regards Jan 

Hi. sherrie, there is a MS therapy centre near you, I go there for hyperbaric oxygen therapy every week. It hasn’t helped with my nerve pain but they have other therapies like shiatsu, yoga, reflexology and exercise machines,they are a friendly bunch and full of fun and helpful chat. You find the address on the Internet but it’s in the skipsea industrial estate. Middleboro. I come from Sunderland but we found it using a sat nav.
Hope you feel better soon.

Lynne xx