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215385 tn?1201802901

UK2 - Samantha

Hi Samantha,

Just thought I would drop you a quick line to see how you are doing?  It's been a while..sorry.  Been a bit off recently and didn't feel much like talking but I think I'm heading the right away at the moment...well for the last 3 days at least.

I've been with my mum and dad today as my dad had a hospital appointment.  Last Oct he was told by Scarborough Hosp that he had lung cancer......it was a mis-diagnosis...thank god.  Anyway, today he got discharged which is great. It's been a nightmare and really effected his parkinsons but he is doing ok now and they are both enjoying their new life in northumberland (near me),

Anyway, hope things are going in the right way for you too. I promise to be a bit better at staying in touch.  

Hope to speak to you soon.

Take care

Em x
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230948 tn?1235844329
uk2
The story of your sister really made me laugh, and its so good to laugh again Em!!!

Im not feeling to bad i put my worship music on and there is something about worship music (any music i guess) that just lifts you up so much, i had a good prayer too.

Iv manged while my husband is out with the kids shopping to wait for it!!!!  iron four shirts lol before i collapsed in a heap on the sofa lol  and that was sitting on a stool still little steps make great things.

So i guess i feel this flare is lifting and with it my mood too thank god, i might still be trapped in the house but im not in too much pain so with effort can do some of the light house work again!!

But i am trapped downstairs and not cause i cant get up there (though at times that is the case) there is a wopping big wasp in the landing and im terried of them!! still i have plenty of stuff to do down stairs for now!!

Iv had wisdom teeth trouble for years till i had them out about 4 years ago i had awfull trouble for 3 months afterwards with something called TJM or something like that my jaw shut tight and i had bad nerve pain on my face!!  now every time i have dentist work the same thing happens it clicks away my right jaw all the time!!

Your face pain sounds simular to a condition that, you dont have to have dentist work to set it off i wish i could remember whats it called!! what am i like!!

The bed thing sounds funny good luck with that!!!

And your a very special lady too!!

And i bet your bum is not big!!

Lucky for me my man loves big women his ex wife was a size 22 so iv loads of sizes to go yet lol

Take care
SAM XX
Helpful - 0
215385 tn?1201802901
Hi Samantha, I am so pleased for you,  I was thinking about you all last night. I think you did really well and I know you husband and kids would have been so happy.  Hope you are not paying for it too much now..? :>(

I loved your comment about the growing bum....my husband always asks why women put weight on their bums and not their boobs first...by women I think he means me....so diplomatic..bless.

I thought I would tell you a funny story about my sister and crutches. But before I do though I must set the scene.  She is an inspector in the mod, very academically intelligent but no common sense.  When she is in uniform at work she is superb, so on the ball, the boss of hundreds of men, including her partner who is a dog handler, she also carries a gun.  Out of uniform she is so different, almost stupid, very clumsy and accident prone.  Anyway, about 4 weeks ago, when she was off work she managed to shatter her knee cap...she doesn't know how, didn't feel it, didn't know she had done it until her knee swelled to three times the size it should be.  Needless to say she has been signed off work at the moment.  Well, her partner Rich was at work when she decided to have a shower, another stupid move by my sister as she can't stand unaided, straighten her leg or anything at the moment and tends to fall over a lot...I'm sure we should have been twins.  Anyway, she got in the shower and left her crutches up against the shower door. She finished her shower, lost her balance and yes you've guessed it, one of the crutches fell aganist the shower door and wedged the door shut.  For over 4 hours she had to stand in the shower until her partner came home and rescued her.  When she told us we all laughed so much...it's so typical and could only happen to her....!

I had a panic yesterday after we spoke.  I started getting pains down the left hand side of my face. I thought, oh no not again as i've had this on and off on the right side for months and it's pretty painful once it starts but never had ir on the left.  Anyway, a was eating a jelly baby last night when I snapped half my tooth at the back on the left.....I never thought I would be so pleased to have toothache, I really thought the facial pain had spread to my face on the left.....very relieved.  I now have a tooth that is almost hanging out but I can cope with that.....trip to the dentist on monday I think.

Bet sign off for now, my brother in law is coming around to borrow a bed from us....strange I know but they have just moved to a rented house around the corner from us until their new house is ready (it's being built at the mo). We have all their beds stored in our garage at the moment but we are also looking after my own brother's classic car as they are having an extension done.  Problem is we have a double length garage.  All the beds and boxes are right at the back and my brother's car is at the front.  I don't have the car keys either so we can't move the car and can't get to any of my brother in laws stuff including the mattresses and beds unless the car is moved....felt really bad about it as they have friends staying tonight, so he is borrowing some beds from us...opss...not good planning.

Speak to you soon

Take care

Em x

p.s. you are special

Helpful - 0
230948 tn?1235844329
uk2
The hair comment made me laugh so much!! mine too if i take my bra off my hair covers both my boobs completly any luck it will cover my bum soon too though i think that will be a hard job as it grows bigger everyday lol

I went out on crutches out to carl mum and dads meal, which a hate as they hurt my arms but i can go longer on them a scooter or wheelchair is really needed but i cant afford a sccoter and my whhelchair was given to me and is real old!! and im just bloody stuborn.

I increased my pain meds and floated mose of the drive there but had to give in after two hours as was in so much pain but his mum didnt seem to mind she is eighty and suffers from bad back problems anyway and almost looked releived so we all called it a day and they are are coming to me sunday to do the cake and stuff.

Well your job sounds very pressured mine was only physical and pressured in the sence of getting to call after call on time on a 12 hour shift in the community, i dropped my hours to 30 in the end and now just dont do anything im the patient now.

My family and friends have become understanding, there are some friends who still ask me to do things for them or go on at me to come out but there not really true friends if they dont understand!!

Your so sweet saying im special so are you im glad you encouraged me to go out, im in pain but it was worth it and i feel better in myself and im sure once im off those diazapam the old fighter in me will return!! x
Helpful - 0
215385 tn?1201802901
Hello again...I thought it was Surrey,as I thnk we had a conversation about it ages ago as I used to live there....sorry my minds not what it used to be.  

I know what you mean about the PT but like you said I've been going there for about 5 years.  I told them everything that was happening.  I went back to them as my friends mum goes there for treatment she has ms and often goes for the same type of massage to loosen the muscles etc. The lady I see is really good and knows when to leave alone.  

I actually work for the Government in education.  Years ago the government set up about 80 partnership across the country in areas of deprevation to assist and help schools, businesses and other organisations to work closer together to support young people through education and training.  This means one day we are rasing money for schools to get specialist status, one day we could be working with primary kids and businesses, the next I could be training teachers and businesses and the next I could be in London meeting MPs or looking after the mayor.  I run the Gateshead Partnership and I'm based within the local authority there.  I have a great team of staff, no direct line manager, which can be scarey at times but we are a great team and before all this happened we had won an award for the service.  It's been a long hard slog as I joined the team back in 2004 when it was about to be closed due to poor results and funding issues etc.  Now we've never been as busy and have been leading on many Northeast projects and initiatives....that's why I said I have a great team.  It was hard when I started as I was half the age of some of the staff and I didn;t want to come across as the jumped up little s*** but it's worked out really well. They are wonderful.

I think you mentioned before that you also worked with Parkinsons sufferers?  My dad has parkinsons but he does really well.  When he has a bad day we say he is having a 'parky' day.  He copes really well and we laugh about it when we can....I think I've had a small taste of what he puts up with everyday and I've got so much respect for him and my mum, they are a good team too.

I understand what you mean about the unpredicable side of all this...one day you're doing great the next your on the floor again suffering for the efforts of the day before. It's the old saying, you take one step forward and 2 steps back.  You wake in the mornings and think...ok what's going to happen today. I think the decision can be made by you and you alone.  I can imagine you must feel torn at the moment not knowing what to do for the best as you're probably thinking if I go then I'll upset my friend, if I don't then I'll upset someone else...it's not fair but I am sure everyone will understand.  You just do what you feel you need to do and what's right for you.  You are the important one right now and knowing you, I bet you never put yourself first...well you should...you're a very special lady and worth it. You're also very precise to your family and friends so whatever you decide, I know they will understand.

Hope the hairs looking good......?  I've not had a hair cut in months...I really need one, it's past my boobs now but looks more like rats tails than something out of a fairy tale...lol.

Keep us updated and what you decide.  But remember only you know how you feel, don't push yourself.  I always try and think, if I go will I feel better for getting out or worse the day after...I'm stubborn though and always make the wrong decision...he he.

Bye for now....

Em x
Helpful - 0
230948 tn?1235844329
uk2
That is a low does of the amitripline i was on 40mg for the pain but it did not work so they swapped me to lyrica.

lyrica is better for nerve pain i think and amitripline is good for chronic pain muscle based but they both act the same way i think.

I usually do push past this pain and thats what landed me with this lastest flare two week agao i went to visit the church on there away day i could not go for the whole day i drove the kids and my friend there stayed for he afternoon and came back!! it was that night the nerve pain attacked full false and i have been like this for two weeks with one good day when i did then school run and came down with the nerve pain again!!

My hips and thighs really hurt so it hurts to sit for long and the whole thing is a sit down thing!!  But my kids really want me to go and i have not seen his parents since August its come at such a bad time as a while ago i had two really good weeks when i was out and about and seeing people (well out at least twice and doing school runs)

Be carefull going to the PT private you dont want them working on you if you have spine problems and have not taken X-rays but if you been going to them for a while i guess they know your history.

I also feel bad if i go tonight as my friends have been doing school runs as i cant drive and then ill go off to this meal and iv also wont be able to meet my friend which iv already told her i cant on this sat so that will like iv made a choice, but thats the trouble with this illness you cant plan and you can only handle one event for me per month never mind two in the same weekend!!.

Im going to wash my hair and think about it. x

Ill let you know

P.S its surrey and i might meet up with this girl if we can get a time when we are both well LOL

What job do you do? i was a support worker who worked in the community sometimes with MS patients how odd is that, mine too was a heavy pressured job, i also feel gulity going out when im off sick people might see me and not understand!!

Take Care x
Helpful - 0
215385 tn?1201802901
Hi Samantha,

How are you today?

Got your reply to the PM...will put your number in my phone.

Is there are anyway you could meet up with the lady you have been in contact with, the one that lives near you?  Remind me, whereabouts you are...I think it's Colchester but I get confused very easily these days...could be Surrey?

I'm only on 10mg of Amitrip.  My doctor told me that the 10mg dose is for nerve problems, a higher dose at about 50mg is for pain (they gave me this when I had my LP headache), 200mg + is for depression.  You'll probably find most painkillers are also anti-depressents.

I know what you mean about not feeling up to going out as I've been like this recently...haven't been out socially with freinds since June...we meet at my house now. However, the other day my mum and dad invited me out with them as they were going to Bamburgh Castle in Northumberland.  I woke up on the morning and was so tired and hurt all over.  I really didn't think I could deal with it...but I forced myself to get up and get out and to be honest I was so glad I did.  It took me away from the same 4 walls and took my mind of things alot.  Don't worry about using a wheelchair, if you need it, use it, that's what they are there for and if it means you can get out then I would certainly use it.

I've only used my stick about 5 times in the last 4 weeks which is good.  I'm having big problems at the moment with my back, legs and head.  My back is so weak and sore from the spasms.  Yesterday I gave in and made an appointment to see my physio.  I am waiting for a referral to see one through the NHS but it's taking forever so I went to my own private one.  Been going for years due to the numerous swimming injuries I have managed to get....I never know when to stop as I loved swimmnig so much. Anyway, I had a back massage and session with the physio.  She said my back is like concrete from all the spasms.  She managed to get rid of the knots etc in my neck but I'm going back again tomorrow so she can finish the job probably.  My upper back does feel a bit better but it was really wierd as after the massage my legs went mental...cramping , spasms etc. The usual pain exists in my legs and I keep getting right sided headaches, especially when I lie down, which is odd.

I don't see the ms dr until December when I have more MRIs.  Waiting for ncs/emg tests and some other referrals.  Have to go to my GP next week to get my ck levels checked again.  I'm not back at work yet but am due to go back on 1st Nov.  Very slowly at first, 2-3 half days a week initially.  My job is so full on and pressured that I know I have to take it easy, otherwise I will be back to square one.

Let me know what you are going to do tonight about the party. I really hope you can go as it will be a welcome distraction.

Speak again really soon.

Chin up  :>)

Em x
Helpful - 0
230948 tn?1235844329
uk2
HI

Thanks Em what would i do without you guys!!  

My mood has been very down and iv had painfull flares and long ones like this before but never got like this i broke down again in the kitchen last night determind to cook my husabnd dinner but i could not he gets so angry with me that i wont give in but his working such long hours at the moment i just hate to see him do everything.

Iv talked to my doctor and im coming off the diazapam when i increased it to 10mg i was at my most emotional and im sure it has some effect on me so iv come down to 8mg and have to wean myself off it slowly she has given me sleeping tablets instead cause she thinks the lack of sleep is bringing me down too.

My antidepressants are still in the cupboard if im still this down after coming off the diazapam then i will take them as i cant go on like this im losing who i used to be!!

I still take my lyrica though i feel this is not as effective any more and im nearly up to 500mg a day now on that, i will still take the quinine and magniusm tablets which help with the cramps.

your amitripline is a anti-depressant, thats the first one they tried me on they use it at low does for chronic pain but its also a anti-depressant and is addictive you have to come off that slowly to and it can increase your appetite like lyrica and make you put on weight but it can be effective, it had no effect on me but did help me sleep and i was happier when on it, i wanted to go back on that but she didnt want to run the lyrica and amitripiline together.

My faith,friends and family are all that keep me going and my new found friends and family on here.

And iv joined another forum where i met a lady called sue and we have emailing and talking she only lives an hour from me she has fibromyaglgia which is sometimes what i wonder are sx are so simular and she cant get out and about either and she is 43 she has lived with this since she was 27 i think and it has not got better as there is no cure for that and can be a very painfull condition.

Still i guess ill know soon up at st georges on the 24th of October and mri on the 25th of November so maybe ill get to know before the year is out i sure hope so.

How are test and appoinments going for you?

I saw the letter from was it the consultant?  I would be confused too but he does seem to want to get to the bottom of it.

When is your next appointment scan?

Are you back at work yet and are you moving about without your stick now?

My husband so wants me to come out tonight its his mum birthday and has arranged a meal he said he wouls take me in a wheel chair but his mum is 80 and walking and im 32 so i think i might stay at home!! im still in pain and when i try and push past it i get in more pain.

Got your PM by the way and sent one back hope it reaches you

Love sam x
Helpful - 0
215385 tn?1201802901
Hi Samantha,

Good to hear from you.

You sound really down though...where's the strong and determined Samantha I know gone. I'm worried about you. Quix and all the others on here are right...don't disappear.  We really care about you and you are one of the crowd here....wouldn't be the same without you.

I really hope the school can sort something out for the school bus as I know this would help. You seem to have a lot of supportive friends and a very supportive doctor.  True friends will always be there and I am sure they know you would do the same thing for them if they needed help.  People do good things to help good people.

I'm not an expert on meds etc but I think right now you need to do what you feel is best for you.  I've been getting awful cramps and spasms and my back has gone into melt down.  I'm taking Quininie and Amitryptiline, only a low dose which I sometimes up when needed.  I also take Diclofenic at times for the back pain which really does help. They are not antidepressants and as far as I know are not addictive....thought I would mention it. I was on Tramadol a while ago for pain relief.

I really do understand how frustrating this is, one day you're up and the next rock bottom and i know how hard it is to try and remain positive, sometimes it's totally impossible. I try and think about the good things in my life and you have great kids, a wonderful supportive husband and friends and a strong faith that I know will see you through this difficult time.  I have been really down throughout my journey and feedup with not getting a diagnosis but my brother, who is a bit of a medical wizz keeps reasurring me that they will get to the bottom of this and that's what I try to hang onto.

Please stay in touch Samantha and remember whenever you want to vent ro talk you know where I am...us UKers need to stick together......lol.

Thinking of you and sending you positive vibes...hmmmmmm!!

Take care Em x

Helpful - 0
230948 tn?1235844329
uk2
Hi,
It great to hear form you.

If you have read my posts im having a rough ride, but whats new!!  Iv been very down and all over the place i did tell Quix i was not going to post on here for a while as im so over sensitive and emotional but some of the others including the wonderfull doni (i have such a heart for her) and Quix talked me into staying around!!

Iv been house bound for two weeks in pain, i had a week and a half of nerve pain in patches all over my body like drills on raw nerves then that passed by uping my lyrica and rest i guess i did one school run and i was back in bed ill with awfull rib pain on my right and left side and pain over my kidney area i lose control twice of my bowels what joy!!

The school and welfare team are now getting involved because i cant cope at home they are appealing along with my doctor to get my children on the transport service if just for short term as i cant keep relying on friends to get them there my doctor is supporting this too. And the school is providing free school meals for the period of time i am ill. Which has helped alot.

My doctor wanted me to take a antidepressant and i asked Quix advise and she advised i should but my husband is very against them so im still not taking them.

Im nearly on 500mg of the lyrica now and have uped my diazapam again to 8mg at night along with the quinine tablets which seem to help, this lastet flare with the pain around the kidneys i guess could be a separate issue and maybe a virus on top of my flare who knows.

when im not in pain and can do the school runs cope in the house and get to see friends im not depressed and have a clear positive mind im depresssed because of not getting a dx and being in chronic pain but Quix said the antidpressants might help me cope with the pain. My little girl is in a play today at school and i cant go im very upset.

Im so pleased for your news about your dad you must be so relieved!!!!

Its so nice to have your Mum and Dad near you for support, i used to live right opposite mine before they pasted away and saw them everyday it was great.

Our you back at work yet?

And whats happening next regarding your treatment following your appointment?

Take care

Samantha x
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