Forum

Fed up!

Hi everyone

I hope today is being good to you all.

I am sorry to moan, but if I don’t get this off my chest, where I will be understood, I will scream. Although hard coping with ppms, I thought I was in the ‘just about managing’ group, but since RA has now crept into my life as well, I am finding it really hard to cope.

My emotions are all topsy turvy, can cry at the drop of a hat, fatigue and pain through the roof, and family who although try to understand, have no idea.

I asked the ms nurse about Sativex four weeks ago, said he would get back to me in 2/3 days, have heard nowt, it’s like trying to get blood out of a stone… I feel completely on my own with this, invisible to the world. How long can I go on feeling like this…I really have no answer to that one.

i am not worried about anyone replying, I just hope by getting it out it will help, thanks for listening.

Pam x

Hi Pam, of course well reply. Youre certainly not invisible to us here.

I feel your pain and sadness luv.

As if having PPMS wasnt enough…the gremlins decide to heap more sh8t on your shoulders.

My hubby has had RA for about 30 years and has been through some terrible times, from losing the use of his legs through to painfully sore fingers.

He injects weekly with ENBREL and he does believe it helps.

Sometimes he gets a steroid injection right into his knuckles. They are painful but start to ease the swellings and pain eventually.

Are you anything separate to your MS symptom drugs?

Poor Pam, our friend.

much luv Pollsx

2 Likes

Oh Pam i really, really feel for you,i feel totally overwhelmed too with stuff just now and have done for a while,wondering just like you how long will it all go on for,it does seem never ending at times it really does,the only support i seem to get is by coming on here and talking to people that just ‘get’ it,it just seems to make me feel not so alone,as it will for you i hope.

Can you ask your neuro or dr for savitex do know hardly anyone gets it though.Have you thought about cbd oil thats supposed to be good for pain.

sending you ((((((((((hugs)))))))) to let you know your never alone,while you have us on here.

J x

1 Like

Oh Pam. Life with ms is just full of sunshine, isn’t it?

I’ve been dxd two years ago and sailed through the first 9 months fairly unscathed. People were shocked to hear of it as it came quickly and without warning. My husband was attentive, helpful and even overprotective. During the last twelve months though, everything has changed. I no longer drive. That’s a killer for me, living in a rural area as we do. I can’t do my (very large) garden any more, which was my escapism. My therapy in life and something I loved. I can’t walk any more. I can just about shuffle indoors and I have had falls. I use a motorised wheelchair for outdoors. We never socialise anymore. My husband has the control now. Where we go, when we go, if we go and what time we go there. I feel I’m becoming bitter and angry. I’m certainly not the woman I was two years ago.

I’ve edited to add, I too cry att the drop of a hat recently. Usually when something occurs to reinforce my disability. Something silly like not being able to put my feet into the legs of my jeans, not being able to lift my leg into the passenger foot well, not being able to cut my meat, on a bad day. This crying makes me feel weak and foolish which makes me cry some more!

I’m grateful for this forum. The information available, the fun, the silliness, the understanding, a place to let off steam and where people understand.

2 Likes

Hi Pam, my husband has ankylosing spodilitis ( arthritis of the spine) which he has had since he was in his thirties and he just had has just turned sixty so I know how awful it is. Over the years he had some awful flare ups but he has been on a fortnightly injection which has been life changing for him. He still has a stoop but not longer the debilitating pain. I do know this injection is used for rheumatoid arthritis as well. It might be worth asking the rheumatologist about it. He also had mood swings but they are not so bad now.

I can’t imagine having arthritis on top of ms.

sending (hugs)

Mags xx

2 Likes

Hello Pam im so sorry I really feel for you it’s hard enough having ms without have the extra problems that life throws at us. All I can do is send my love and a a hug…an Frazer sends a loving lick and a wag of his tail. Michelle and Frazer xx sent from my mobile

1 Like

Pam,

Firstly (((hugs))), as if you didn’t have enough to deal with without all this.

I don’t know where you are based geographically, but I’m under Salford Royal, and I know of someone who was prescribed Sativex through the pain clinic there. I think she (and her OH) was very persistent, but it did pay off in the end.

I would pester your GP for a referral to a pain clinic - and don’t leave without either a referral either the pain clinic or a consultant who can refer you. That makes it the consultant’s decision, rather than the GP’s, I don’t think they’re as conscious of their budget.

It may be another option to go through your RA consultant rather than your MS nurse.

I’m not surprised you’re over emotional if you’re suffering pain and fatigue, that’s enough to set anyone off.

Fingers crossed you get some progress.

Jo x

1 Like

Hi Poll

Thank you for your kind words, means a lot, I never feel invisible on this forum, I mean in general, I’m tired of going from one specialist to another and each saying to ask the other for Sativex. Perhaps I should find a squat in Wales and take up residence there!

I take ami and Baclofen and the Rheumy put me on Hydroxychloroquine which apparently takes 6 months to work (another 3 months to go) so in the interim she has me on steroids and codeine phophsfate to try to help. My hands and feet are so swollen and painful and my fingers no longer bend and are deformed already, what a bloody state.

I am back with her this week and last time she mentioned Methotextrate if this isn’t working, but even more drugs scares me, so I shall have to see what she decides. My problem is I am on warfarin and all these drugs affects my INR and then I have to inject heparin as well as taking the warfarin.

i am sorry if this sounds like poor me, I just feel I can’t win this battle at the moment, but I WILL convince myself to fight harder.

Thanks for listening, take care and I so hope your career problems have a good end.

Pam x

1 Like

Hi Mrs J

Thanks so much for your kind words, means so much, and it does help having this forum to vent on, especially with people who really do understand.

I asked my GP first and he said I had to get authority from the MS nurse first, but I don’t think it will ever happen. I have joined the cbd forum and researching it, and will ask GP can I take it with warfarin, and will definitely try it if he says yes.

Take care

Pam x

Hi Poppy

Thank you, your words mean a lot, and yes MS sucks. I was dx many moons ago and went from sticks to crutches to a walker on to a wheelchair and powerchair, it has been a steady decline, still waiting for the plateau the neuro told me would happen, but hey ho.

In February this year I was also dx with RA and it’s since then I have found it difficult to cope both physically and mentally, but this forum is a life line just to be able to get it off your chest, helps no end.

I will find my ‘fight’ again and come back from this.

Take care

Pam x

Hi Mags

Thanks, your words are reassuring, hope both you and your husband are good.

The Rheumy has started me on a treatment plan but it takes 6 months to work, so I have to find some patience from somewhere as i am only 3 months into it. I see her again this week, so will see what her decision is then.

Take care

Pam x

Hi Michelle

Thanks so much for your kind words and a hug, and give Fraser a cuddle from me, this forum is an absolute lifeline with all you lovely people, means such a lot…

Hope your problems are sorted and you will feel better, take care.

Pam x

1 Like

Hi Jo

Thanks so much for your wise words, really does help.

I asked my GP who told me to ask the MS nurse which. I did, fell on deaf ears. I also asked the Rheumy, she had never heard of it and also said ask the MS nurse. It’s like being in a game of pass the parcel from one to another, with no one being prepared to take the lead, but I will keep asking.

No wonder people turn to the ‘real’ thing!

Take care

Pam x

Hi Pops, I`m picking up on something you said and would like to say how I deal with it.

After looing my ability and confidence to go out alone anymore (eons ago now!) I decided to get carers in. This was 6 years ago and I wish everyone who struggles could get the benefit from it as I do.

Although, I am seeking a replacement carer at the mo and am down to one.

Thats Bev, my carer, my friend, my holiday companion and my confident. I truly believe that apart from this forum, she is the only person who truly gets` me!

I had an assessment from the social services originally and was given 8 hours a week. As my condition worsend (a lot!) my needs and disability grew and I now have 24.25 hours, plus 2.5 sleepovers a week…how do you do half a sleep? I hear you ask…you do a sleepover every other week!

Bev comes in 5 mornings a week and sees to my personal care. She takes me out and I have just bought a cheap wav, which I call Billy and love! My outings were restricted by my hubby too and I got pig sick of it.

Would Direct Payments help you too?

pollsx

1 Like

Thanks for taking the time Polls. :slight_smile:

Things work differently here in Ireland. I must look into that payment or an equivalent. I feel bad about my whinging now. We are going away for a week on Friday. I budget and organise it all and couldn’t do it without the wonderful airport assistance team. I really shouldn’t gripe. I’m luckier than many others. Xx

Hi Pam,

Oh yes, that game - I’m currently trying to get some LDN, and everyone says it’s no big deal, but doesn’t actually write that prescription.

If you do decide to go for CBD oil, they sell it in Holland & Barratt, although I suspect it’s probably cheaper on Amazon.

I do hope you get sorted soon, Pam, it’s too much to put up with.

Jo x

2 Likes

Hi Pam and Jo. I’ve got cbd a few weeks ago. Having done a bit of research and getting opinions on here, I’d like to add…

What H&B sell is a very small percentage strength and not too effective. I got a much higher one from CBD Brothers.com. They have a very good reputation and have a very active, informative Facebook page too. I use the cbd purple paste under my tongue at night. Brilliant for giving me back my nights sleep. :slight_smile:

1 Like

Hi Pam, I’m from Wales & I can’t get Sativex either! I have RA as well as Scleroderma, another nice auto immune disease that affects the joints. I have been prescribed Methotrexate & it works really well. The pain has been a lot better with it & swollen joints are vastly reduced. It does play up on occasion & I have to have monthly bloods done, but when I think back to how bad the RA was, I’m glad I started Methotrexate. I’ve been on it for 6 years with no problems. Hope you feel better soon xx

1 Like

Hi Tracey

I thought Sativex was on prescription in Wales…no point me finding a squat then! I am sorry you have problems as well, but am glad the Methotextrate is working well for you, long may it continue.

I shall see what she says this week, but am seriously considering cbd oil.

Thanks for your wise words, they are very reassuring, take care.

Pam x

Hi Poppy

Thanks I have been reading up about cbd brothers and am going to check with GP.

Pam x