Having a meltdown!!! Give me a break pleaseeeeeee!!!

[Kerry72]

I'm having a bit of a meltdown!!! Feel like I'm constantly going to the GP with different symptoms that I'm now ignoring things hoping they go away...two of my latest things along with the arm rash and itching and my reduced appetite/ feeling of fullness ...I'm now having spells of lightheadedness and muscle weakness...washing my hair in the shower is so hard as my arms really really ache. This has all been going on since the start of March...one thing after another!!!! Hubby says go to see dr again but I'm just so fed up with it all...has anyone else experienced the muscle weakness??

[zenabb]

The way I see it for myself is that I have no option but to carry on. So I try to diminish whatever symptoms I have in whatever way I can, and if I can't think of anything I go to the doctor to see if he/ she has any suggestions.

I found washing my hair hard for a long time and finally decided to have it done by the hairdresser whenever possible. It's not a pamper, it is necessary.

I have also found that symptoms come and go in long cycles. I hope that yours will better at some point at least for a long while.

Good luck my friend.

[Anteater]

Hi Kerry, just to put yr mind at rest there are a load of us that have and are suffering the same symptoms as you. There was a time when I was at my GP's almost every week with one thing and another........it became my second home...... Anyway, my rheumy put me on Hydroxychloroquine Sulphate tablets .. They are supposed you suppress the immune system which in turns helps with the musculoskeletal aches and pains. When I first started on them I felt quite unwell and stopped but was encouraged to go back on them and second time round was much better. I can't say that they have taken the aches and pains away but I feel much better on them. Why don't you ask your GP or rheumatologist next time you see them ......

But all in all you will learn to deal and live with it and rest assured you are not alone xx

[Kerry72]

I've been on hydroxychloroquine since November and feel they are helping as I've not had inflammation for a while but have only just stopped the anti inflammatory meds too so here's hoping!! Until last April I have never been ill....in fact I have hardly ever been to the GP since having my tonsils out when i was 20 ( im now 40) then it all began and its something I'm just not used too. I'm seeing my rheumy on Friday and it can't come soon enough. I think im just feeling slightly peeved today x

[Anteater]

What strength are you on - I started on 200 mg then increased to 400 mg that's when they first made me feel unwell.....

I know where you are coming from Kerry - although I have had Raynauds since my teenage years I was diagnosed with SS in 1999 and I know now I had the symptoms way back in my twenties lol I'm 57 now .... But never really had any sick time off work until the dreaded .. Need I say more .. Hehehe xx

On top of that I now seem to be getting every auto immune condition going .... Will there ever be any hope for us

Good luck at your rheumy appt I'm seeing mine next Thursday lol xxxxx

[living-the-dream-ssc-ray]

Hi everyone ! during the winter, the only time I go out is to attend medical appointments and along with the dentist, my diagnosis has kept me very busy with all of the appts ! I had hydroxychloroquin back in 1998 but it didnt get me stable - cellcept 2mg /day got me sorted in terms of skin / gi problems etc. I couldnt lift my arms to use a hairbrush, I can do this now, but not for too long. The frustrations accompanying an autoimmune condition are endless !

my particular one at the moment is that I have lived in track suit bottoms for the last 5 years, along with ugg boots ! great look ! I have a calcium lump on my left knee which doesnot like anything close touching it, as well as the skin on my thighs is too sensitive to have denim near it so I havent been able to wear jeans for years either. I very rarely accept invitations to go out for dinner etc as although I know, it doesnt really matter what you are wearing or what you look like, I am very conscious of my appearance and eskimo outift ! and it is not very comfortable having to wear so many layers - so I am sorry to say that I just stay home alone, dreaming and looking forward to some sunny days in the summer to enjoy.

Needless to say that I am single, and have been for the last 4 years, the longest I have ever been single since I was a teenager. This is partly my choice to have a boydetox as I want to focus all of my time and energy into getting and feeling better, and I found that to have a partner that really does understand this illness and not get annoyed with another day of my not feeling well, very difficult ! I think this is one of the challenges of looking ok on the outside, when the inside has a different story. and of course, you have to go out and about to meet people, which I do not do, and dont have any energy for anyway. All in all I have very few friends compared to pre diagnosis which can sometimes feel quite lonely as well. Wehoo living the dream with systemic sclerosis and raynauds x

[nettie545 in reply to living-the-dream-ssc-ray]

I'm sorry you that you are so lonely! I feel for you! I have Raynaud's ans symptoms of Auto-immune as well as I had Bechets years ago and still have a few left over symptoms from that. People just do not understand what it's like to live with constant pain, and I have given up trying to justify myself. My second husband divorced me because I had Bechets (auto-immune) 36 years ago, so yes, it's difficult to find someone who will put up with all the different symptoms that appear over a period of years. Well, better to be alone than with someone who doesn't care I think!

It's hard to be alone all the time, so I will pray that you will find faithful friends who will love and understand you. I have one friend who is so kind. If you go on the Age UK sight and type in 'Befriending' I'm sure you'll find people who just pop in to have a chat etc. You may find someone you can really be friends with through them. Give it a try!

[living-the-dream-ssc-ray in reply to nettie545]

Ah Nettie - bless you thanks for your kind words ! I am not lonely as such, as, as the saying goes 'nobody can be lonely if they like the person they are alone with' or along those lines anyway ! I am quite good in my own company and often prefer it ! However my lifestyle change due to the diagnosis is huge in that I used to be quite a sociable fun loving gal, whereas nowadays I shy away from social doos ! This may have a connection with the fact that I no longer drink alcohol (thanks scleroderma...) andso dont want to be around it.

Sorry to read that you empathise with me on the 'finding an understanding companion' - I appreciate your honesty at sharing as I can not imagine how that must have felt ! Nobody is lucky enough to have hit the jackpot and got me down the aisle haha, but it still hurts nontheless, especially when you dont choose to 'get ill'. Better to lose a lover than love a loser hey

I am lucky to have friends around the world, and having the internet feels like having the world in my lounge to me !

I have also taken some of this 'alone' time to really go within and try and nurture myself, as I am a well-being activist ! Thanks for your thoughts x

[danacetz in reply to living-the-dream-ssc-ray]

To quote Sheldon from the Big Bang Theory,

"Is that sarcasm?"

[Yorky]

Hello, I started with muscle weakness in my arms about 10 years ago. I bought some little weights to do exercises with, but it just got worse. I couldn't put shampoo on my head and although right handed couldn't lift a cup or glass to my mouth (it was more marked on the right than left) Eventually I mentioned to my consultant, asking if it was normal in Scleroderma. He just said hold you arms out in front of you and try and keep them there when I push down, of course they went straight down. To cut a very long story short, I was referred to a neurologist who diagnosed arthritis in my neck, the discs having pushed into my spinal chord permanently damaging it, I never had any pain in my neck. I have had the discs removed, but have not regained any strength. Perhaps to need to mention it to your doctor. Best of luck.

[fruitpastle in reply to Yorky]

HI reading all these comments and although everyones stories are all so linked with pain frustration at not being able to do the things we took for granted, it gives me some satisfaction to know that when i stand in the shower not being able to wash my hair ( and i have really long hair way down my back)because my arms are bent and i cant get them to reach my head...that im not a mental case alone with my own thoughts wondering what the hell is the matter with me..at least i know theres alot of other people feeling exactly the same as me...there are times when i go to put food in my mouth and my arm is so sore and locked like someones squeezing it at the elbow that i have to lay my head onto the opposite my shoulder so i can get my hand to reach my mouth..how mad is that its all mad!!...then when u see ur husband looking at u as if ur a loon u just think no one has a bloody clue how u are and cope with all the little things ..i have warm 'pull over the head' fleeces that i cant wear because i cant lift my arms up to put them on..and tryn to get them off is suffocating ...i have been this way only 2 yrs b4 there was never anything wrong its a crazy journey this ;-(

[wartsandall]

Hi Kerry.....I really feel for you !!!!!.....I know exactly how you feel, the every day feeling of exhaustion and the weakness you describe in your arms and body......I have sudden panic attacks at the sight of a plate of food !!!!!!!!.......I sometimes feel that no one believes me when I claim that the sight of food scares me !!!!!!!!! please let people understand that it's not all in the mind........we are genuinely feeling early satiety, fullness, and bloating......our muscles ache and we tire easily............the problem of having an auto immune disease is very frustrating and I wish people would understand......I recently visited my GP with symptoms of feeling lightheaded......when I walked into his surgery I felt his heart sink !!!!!!...........DO GP's BELIEVE PATIENTS WITH SCLERODERMA !!!!!!! or are we classed as those patients that waste time and resources....!!!!!!!!!!!!!!

[newton]

I know exactly how you feel. I suffer the stomach fullness after eating only a small meal which is so fustrating when i love my food but I listen to what my body is telling me and act accordingly. This quite often means lots of smaller meals throughout the day so I don't lose weight. I take sugar puffs to have with my coffee break at work, Build Up with a brioche roll at tea break etc. I to have had the muscle problems and struggled doing my hair because I can't hold my arms up long enough, I find Ibuprofen helps. The skin itching, I use some body cream/lotion as I found the dryness of my skin was causing the problem. I try and have some me time and pamper myself a little as a pick me up. I also find doctors don't fully understand the problems so I try and sort myself out as best i can until I see my rheumatologist.

Take care

[Kerry72]

I must be quite fortunate as the new surgery I'm at has been amazing, they listen to me and actually hear what I'm saying, altogether I've seen I think 6 different gps since moving to a new area in november and each one has been brill. I really can't fault them. I count myself lucky the my hubby is supportive too. He'll often ask how I am. Newton I love my food too but I think I'll have to do what you do and eat smaller meals more often. The early satiety I thing I can cope with but I'm hoping the rheumy has an answer for the achy arms

[Kerry72]

Anteater I'm on 200mg twice a day of hydroxychloroquine, 40mg of omeprazole, and 10 mg twice a day of nifedipine x

[Skwiglee]

I have muscle weakness in my upper body too. Really frustrating. So now I go and have my hair done at the salon - problem solved! I treat it as a therapy. I also have had purple streaks added, as my consultant told me categorically that I was going to be bald!! My hair has never looked this good in my entire life. Book yourself an appointment girl, chuck out the shampoos and get pampered. It's the only way to deal with it. Xx

[nettie545]

Kerry72. I feel for you and know how frustrating it is to have your GP not take much notice of all the different symptoms! In fact, I have just printed out a whole lot of info from the Internet (which they hate you to do, but tough!) and I am going to insist that my GP reads it while I sit with her! I'm also sick of being treated like a Hypachondriac! So I am going to have a hissy this week! I do exercise a bit, but it doesn't seem to help the muscle weakness and it hurts my hands cause of the Raynaud's and my knuckles have got so big this last few months and so sore as well. We do what we can hey? So, if I were you, I would ignore the GP's bad attitude and insist on a second opinion or go to another GP! Best of luck and keep that chin up!

[living-the-dream-ssc-ray in reply to nettie545]

Hey nettie - have you checked out the Raynauds and Scleroderma site ? raynauds.org.uk

They have information packs which you can order and take to your GP or any medical professional with view to give more information about the condition. I am sure if you give the office a ring, they would be delighted to send you some info packs to distribute ! x

[nettie545 in reply to living-the-dream-ssc-ray]

Oh thank you. You have saved me a mountain of work. I will try that site for the packs. You're a wizz!

[living-the-dream-ssc-ray in reply to nettie545]

Hiya ! I just thought I would report back as I have been to my local hospital for my monthly blood test, anyway, I took a info packs to pharmacy, a+e, the rheumatology consultant and nurse as well as the rheumatology occupational therapist. (I knew I had been a medical rep before being a barrister, for some reason ! ) and, they were ALL thrilled for the info. I thought they may say ah thanks but no thanks, but they all said thank you and couldnt wait to look at the leaflets and the Hot News copies. All I did was speak to one of the lovely peoples at the raynauds and scleroderma association, to organise for them to send me the info packs and I then went and distributed ! simples ! haha ! So give it a try ! let us know how you get on ! x

[nettie545]

I am so grateful for this site! I began to think I WAS a Hypachondriac with all my aches and pains coming and going and then a new symptom! It is frustrating! It's so great to read about other people identifying with you and encouraging you and telling you that you're not losing your mind and imagining all these things! Thank you to everyone!

[pamela2]

this all sounds so familiar,my last rheumy said but dosnt a good exercise help,she dosnt know how bad things can get...i have since asked my gp to send me to a rheumy who specialises in raynauds so dont know where i'll end up . ..mind i think my gp thinks raynauds is only a white finger or two and one gp even said "you are getting older you know" i did reply with a "so" but didnt go down well ..and when i wrote lots of symptoms down and gave it to one of the gp's he just crumpled it up and threw it in the bin..great...the only thing i have found is to have some one else with you ,seem to take more notice when u have a witness they make you feel like a fraud................so is really good to read how everyone gets thru......take care all

[living-the-dream-ssc-ray]

That sounds awful pamela ! I would complain to the practice manager, take in some info leaflets avail from the association, and change surgeries !

I am so lucky that I have a fantastic medical support network, with my local GP, my local rheumatologist, and the wonderful Prof Denton at the Royal Free. Get referred to see him ! x

[danacetz]

I am wondering if you have had your Thyroid checked out.Just this last year feeling so fatigued and feeling like I have fibromyalgia, when I walked my thighs and hip was achy and heavy. It felt like I was walking through water. Some how my dr. decided to check my thyroid it was low and she started me on thyroid med. Now I still have some weak arm strength but the tired achy legs are gone.. I still get the sore hip buttocks thing when I walk but I think its arthritis from when I got hit by a car 30 years ago.

Keep hanging out at this website it helps keep your chin up. Its nice to know your not a hypochondriac. It's so frustrating that there is such little known about this autoimmune disease.

[living-the-dream-ssc-ray in reply to danacetz]

Hiya ! thats why it is so important that we all do what we can in terms of spreading the awareness, and fundraising where we can ! There is a cure out there, as Edgar Cayce was healing scleroderma patients in the 1920s without the cytotoxic drugs which are used now ! Thanks for sharing about your thyroid ! x

[graygirl1]

Hello Nettie, Don't dispair, lots of us experience every symptom at one point or another. I too am having a lot of pain of the upper arms and shoulders plus muscle weakness of both arms for about a month or so. This is a new event so I'm monitoring it for a little time longer then decide what to do. I'm always in my doctor's office, I would say weekly, reporting all sorts of event so she has it on record even if nil can be done. I have quit telling family and friends anything about my illness other that I am in pain 24/7. There are some nice people around who try to understand and some who don't want to know. Just be the best you can be and rest, eat well and take good care of yourself. I 'm going to get lots of leaflets and pass them around, spread the word Raynaud's.