Medication and other options.

I feel very lucky that I have a good rheumotologist. He is French but speaks very good English so we rub along quite well. He has looked after me since I was diagnosed in summer 2008, it is only the rheumotologist who deals with my RA and prescribes medication. My GP is kept in the loop but he doesn't get involved.

Recently I had to see a neurosurgeon recently as I have a trapped nerve in my upper back and a herniated lumbar disc. It was the rheumotologist who had to refer me. Due to the trapped nerve I haven't been able to discontinue the prednisone steroids I have been taking. I am down to 6mg a day but just can't get off of them. I have been told it is the steroids that has caused the diabetes that I was diagnosed with last October so I am keen to get off of them. I have a scan tomorrow on the upper back/neck region to identify the exact disc involved and then I see the neurosurgeon again to discuss an operation. He has promised me that he will investigate the lumbar region when he has sorted out the trapped nerve. I certainly hope so as the herniated disc in the lumbar region is drastically impeding my mobility.

I really detest taking my RA medication, steroids have given me exaggerated muscles, diabetes, affected discs in my back and methetrexate was possibly involved in pneumonia I had twice. I seem to be prone to sinusitis and this then becomes chest infections. As many people with RA I have more than one auto immune disease and all cause me pain.

I decided to dig out my TENS machine and use that on pain affected areas and I find it very useful. My physiotherapist certainly approved. It is just the electronic waves and no drugs involved. I also use heat pads and cold pads depending on the areas involved.

I get a lot of pain in my hands and wrists so I purchased some fingerless support gloves and found these very effective. For the cold weather I wore them with some fingerless mittens. The ones that worked best came up to my elbows.

Last week we had some beautiful weather. It was warm and sunny and I certainly felt much better but today I am in pain again as it is cool, cloudy and rainy.It makes me depressed too when the weather is like this as I just cannot do much if anything. Last week I was, with my husband's help, actually doing things around the house and cooking. Unfortunately I have had to use my food processor more and more to make pastry as rubbing fats in by hand are just too painful. But it is a little price to pay if I can make meals myself. When I can manage to be a normal housewife it seems to help my pain as I am happier and contented. This I think is as much a relief for the RA as anything. I usually take morphine or paracetamol and codeine for pain but last week I hardly took any! Not so this week, I have needed to take morphine just to sleep.

I have investigated music therapy. I am a lover of music of many forms but especially like classical music, Celtic music and rock.

Apart from rock music I find music soothing to meditate to. However it depends on my mood what I listen to. I like nothing better than singing along to Queen in the car on the way to a hospital or doctor appointment. When I was having physiotherapy with my previous physiotherapist we would play Queen albums whilst he worked on my joints. A little elderly lady was in the waiting room when I came out and she looked horrified! The physio said she probably thought she would have to listen to Queen too while he manipulated her knee!! This evening I am having a wonderful time listening to a Celtic concert whilst typing. Music is used a lot in therapy and proved to be very successful too. It can make you laugh and make you cry. It can cheer you and depress you.

Many people would prefer to use non drug treatments but I understand that it is not totally feasible to just have that treatment, it is however helpful to use these alongside regular prescribed medication. I do not agree with people who say that they have a cure for RA by using non drug treatments and therapies. In fact they make me very angry as no cure has been found for RA and rheumatologists will tell patients they will have to take medication for ever.

One therapy I would like to indulge in is walking. I have the herniated lumbar disc, RA affected hips, knees, ankles and feet and am only able to walk very short distances and that is holding onto my husband's arm or my walker. Normally I use a wheelchair; I have both a manual and electric chair. But I am used to this now and for me to spend a day without pain would be amazing.

I have found that my medical people - doctors, physios and nurses are keen to promote non drug complimentary therapies as long as they are use in conjunction with RA drugs. We all have our favourite means of dealing with pain. For me the heat/cold therapy, music, compression gloves and TENS all work well; however, we all have to find what is best for us and cannot tell anyone else they will certainly benefit from works best for us.

Cold plus arthritis equals = pain

We, like everyone else, are experiencing extremely cold conditions. This has resulted in pain, stiffness and tiredness.

The temperatures have been down to minus 20 degrees at night and minus 10 degrees in the day. The mornings have left us without water and heating although until today they have come back on. Today we have no central heating and frozen pipes. Luckily we do have a wood burner and an open fire but this is insufficient to heat the upstairs where our daughter and her family live and they are desperately trying to get the pipes unfrozen. We telephoned several heating engineers but were running out of possibilities until one man took pity on us and is coming soon.

In an effort to keep warm we are drinking cups of tea and eating stews, casseroles and curries! Luckily these are all favourites of the families. We are all wearing layers too, which helps, but doesn't help to ease the pain. I have a thick pair of walking socks I bought many years ago when I was able to go hiking and these have been doing a sterling job.

The heating engineer has been and found a valve had been fitted wrongly. He has rectified the problem and now the heating has come on! Simple and effective.

My daughter is very pleased to have the heating back as she has been trying to potty train her little boy and he was not impressed to be doing so when he felt cold!

2012 has not started well - understatement!

After a pretty rough 2011 I had hoped 2012 would be better; how stupid could I have been?

After suffering pain in my neck area again I suddenly found it was spreading down through my left shoulder to my elbow, wrist, hand and fingers. Then I started to go numb from my fingers up.

After a particularly difficult day my husband was helping me get ready for bed and the pain was so intense I almost passed out. He got me in the car and took me to hospital. I had a scan then was put on a drip with morphine, steroids and anti inflamtories. A doctor came to see me and said I had a trapped nerve in my neck which was the problem and I need to see a neuro-surgeon.

I was transferred to a hospital nearer home the next day and for ten days was treated with morphine, anti-inflamatories, fitted with a neck collar and had my arm immobilised with straps. I came home with the collar and immobiliser plus morphine and anti-inflamatory drugs.

I saw my rheumotologist a couple of days ago and he examined me then referred me to a neuro-surgeon. He explained that, although it isn't his field, the operation could help the pain from my shoulder to fingers and the numbness but I would still experience pain in my neck. He also said the operation was risky because of where the problem lies. I understand that I need to think about the operation as any operation is intrusive and has it's risks. I have used a wheelchair for around 11years now and am used to this but I do have functioning arms and hands. I can walk albeit slowly and painfully. Having said that I would like to be better than I am now but if I had to wait a very long time before an operation it would be dreadful as I don't want to become reliant on morphine or a neck collar. I am somewhat confused and worried about things.

I have an appointment with a neuro-surgeon 14th February which is quick. The ball has started to roll and I hope they can help me as even typing this is painful and the morphine makes it hard to concentrate and think.

Pain, pain go away but don't come back another day.

In a lot of ways today has been one of the worst I have ever had. The herniated disc in my neck has been really bad which means I have pain from the top of my back right down my arm into my hand.

This means getting my husband to help me. He has been rushing around getting cold pads out of the freezer, putting a hot pad in the microwave and helping me get attached to my TENS maching. I explained where the sticky pads had to go and he was rooting around inside my nightie to stick the pads on the right places! Then it is finding the right connections, the white one on the bottom pad the red one on the top pad etc. So there he is almost strangling me while he tries to attach the snapper to the pad.

Then he says he will do the heat pad and bring some cold pads when the TENS has finished so we set the timer on the TENS and he goes to set the timer in the kitchen while the machine pulses away to, hopefully, get rid of the pain. No joy though. I have had hot pads, cold pads, TENS and painkillers but nothing has worked and I am still in pain and not able to get hold of the rheumotologist until tomorrow. I can't sleep because it so much if I lie down. It also hurts to sit down, stand up and and worst of all try to walk.

When he isn't getting pain relief he is rushing round like an idiot to pour me a drink, make tea, cook the dinner and cut mine up because even eating is difficult. As I need to test my glucose due to my diabetes he comes to help with that too. Then he sits down to watch his footie team to find the game has been postponed (no that isn't funny.)

Me I just lie here saying 'I can't ..............' I have to bang on the wall to get his attention which from my point of view isn't funny either just flaming painful.

He came in just now to ask if he could do anything. All I can say is I want to get rid of the pain and the only way that is going to happen is a doctor giving me a strong painkilling injection. When this happened last October I just got pain in my neck and a bit of shoulder pain but the numbness in my hand was the problem. Which got worse as the numbness spread up to my elbow. Now strangely the numbness I could cope with, it wasn't nice but this pain is unbelieveable.

I am wearing the neck collar that was given to me in October but it isn't doing anything to help.

A friend on facebook said perhaps I hade been typing too much, which is possible I suppose. But I cannot be sure. What I have wondered is perhaps a nerve is trapped, if so can it please extricate itself from where it has gotten itself trapped, thank you.

This is a whingeing blog today, I know and am sorry but sometimes it is essential to get these things off your chest.

Sitting comfortably?

I had to give in to using a wheelchair a long time ago and we found that the cobbled streets and pedestrian areas here were not very wheelchair friendly.

A lovely medieval town near us has many cobbled areas and my husband has no option but to push the chair over them. The wheels get stuck between the cobbles, I nearly end up falling out and I tell him often he chooses to push me over them on purpose! Of course he pleads that is not true, uuumm! It is very uncomfortable too as the constant jigging about causes pain in my back. It isn't any better with a walking cane either as the end can also end up between the cobbles causing one to trip.

We took a trip to Dijon, the capitol of Burgundy, to see how user friendly it was. The answer is not very.

The main problem is dropped kerbs. The distinct lack of them is evident to people with wheelchairs and pushchairs. We actually found a road with dropped kerbs one side and not the other; very strange and obviously not thought through. Some kerbs are incredibly high and then having to either get the chair up them or down them is hindered by the cobbles; again.

We arrived at a disabled parking space one day to see an ambulance at a doctor's surgery. In France the ambulance system is quite unlike that of the UK. You can book an ambulance or ambulance car to take you to appointments. We watched as two ambulance people lifted an elderly man from the ambulance in a wheelchair and then had to lift the chair with the man in it up a flight of steps to the doctor's office. I am sorry to say that this is not a rare occurance.

We were looking for a bank. It was frustrating to find that so many banks do not have disabled access. It is not restricted to banks. Post offices are also in many instances inaccessible, the one in our nearest town is a point in question and I have to send my husband with a detailed list if I need anything from there or sent. The most annoying and frustrating place was the Tax office. We submit our tax form every year and we would go to the office to make sure the form was correctly completed. But it was a nightmare to get into and because the building was leased they couldn't add a slope or any other entrance. The inside is beautiful as it is a very old house which has been converted. The stone stairs have carvings and ornate bannisters. I, however, have to wait until someone is free to come and see me downstairs in front of everyone else.

Difficulty in access isn't restricted to public buildings. Restaurants are notorious for having bad access. On holiday one year in the Alsace we stopped at a restaurant where I asked if I could get into the restaurant. I was assured that there was no problem; the restaurant was upstairs but no lift! I have had very helpful restauranteurs who have made space for me but I have found it very hard too which does spoil an evening out.

Concert halls are just as problematic. I saw that a favourite band of mine was coming to a big arena near us. I tried to book seats as soon as we knew but they were not going to make it easy for me. I couldn't have the wheelchair as there was no room and I would have to sit on a chair. This is extremely uncomfortable for me but also I actually had to get to the seats in the chair and what would happen to the chair after I had transferred? I couldn't get to the refreshments in the interval and then I had to get out at the end; not at all satisfactory.

Access to shops and shopping is a bone of contention for me. Some shops are so cluttered with stock that there is no room to manoeuvre the chair. Invariably I end uptaking half the stock with me on the chair. There is no room to wheel between aisles due to end stands which protrude into the aisle.

Supermarkets with trollies that fit the chair are very few and far between which means me having a basket on my knees causing a great deal of pain and discomfort. And the checkout! Unlike the UK where all checkouts are the same size here in France the checkouts are all too narrow for the manual chair let alone an electric one. There are one or two checkouts wide enough for my chair but often they are marked for disabled people, ten items or under and for expectant mothers. If you ask if the person if front of you needs a designated disabled checkout they will say that they didn't realise it was a disabled one even if there is a huge great sign there! The checkout cashiers don't help as they will not tell people they can't use them and you arrive with a basket of shopping and they serve someone with a trolley load and give you an appologetic smile. I said to one that it was her job to serve just those deserving of using a designated checkout but she just shrugged.

I have said before that the disabled people themselves don't see this as serious. They just accept that things are the way they are. L'Association des Paralysés de France is set up to support and assist disabled people and their families. However they don't fight for these basic rights that we can access places the same as anyone else, do more that buy a few basic items at one time in a supermarket, go and enjoy a concert, access a restaurant or even submit a tax form. Disabled people are as entitled everyone else to live a normal life. I don't want to change the quaint, medieval towns and resurface them but dropped kerbs is not a great ask. I would like shops to rethink their displays to allow people, like me and you, to shop normally without hinderance. I am not asking for much just understanding and respect. I give people respect if they earn it but I cannot give respect to those who treat me as though my money isn't as good as anyone elses.

I had an experience in hospital that in many ways was quite encouraging. I was admitted with a herniated cervical disc and at first I had to stay in bed because the armchair they supplied was quite unsuitable. It had a low seat and back and couldn't support me. I asked if my husband could bring in my electric wheelchair and they agreed. The difference was amazing, I could get out of bed and sit in the chair giving me a different perspective on the view outside and the room. I was then transferred to a hospital near home to have what was called rest and recuperation. Again I asked for my electric chair and again they said yes. My husband placed it by the bed and I could easily transfer from the bed to the chair, no problem.

One day I was in bed when a lady came in to clean and I was astounded as she tried to lift the chair to clean around it! It won't move she cried. No, it is very heavy because it is electric and has a motor on the back! So she put her hand on the control and pressed the button whereby the chair shot forward into her. Luckily she wasn't hurt but she left the chair alone after that. Sometimes you just wonder where they find people!

Is your consultant sitting pretty on their pedestal?

I have found that extracting information from consultants is equivilent to having a tooth pulled; both painful and frustrating.

I have a fairly good relationship with my rheumotologist who, for a doctor in the area where I live, speaks excellent English. We talk in English with me translating into French things he is not sure about and the consultation ends up in a lesson. He will ask what things are in English and me asking what things are in French and we take notes!

However, this relationship is marred by the fact I have to ask him if a symptom is connected to rheumatoid or osteo arthritis (I have both and fibromyalgia too.) He often says 'Oh yes.' or annoyingly, 'most probably!'

I am a member of various groups or forums and it there that many of my questions are answered. It is quite upsetting to read the problems faced by so many sufferers of RA. It is a despicable disease that has so many side effects that are often unwisely ignored by sufferers.

I had great difficulty eating, talking and yawning. Eventually I googled the symptoms and of course it was the RA. I spoke to my rheumotologist and he agreed. The same with my neck. I had a very worrying time where I was dizzy even lying down. I went with my husband to the pharmacy to collect his prescription and I fell over. The pharmacist said immediately it was the RA. I had a dizzy spell at the rheumatologist's office when I accompanied my husband and I told him what the pharmacist had said but he wasn't convinced.

He was convinced when I was admitted to hospital with a herniated cervical disc and he treated me for it. That was last October. We had believed it was better but it has herniated again and I have two weeks of wearing the cervical collar, taking higher doses of steroids and painkillers and not moving my neck any more than is necessary. If he had acted a year ago perhaps I might not be in this painful position.

Do we see our consultants as infallible? Are they put on too high a pedestal? Should we ensure we are better informed?

We should see the consultants as fallible, they are after all only human and have choices to make as many of us do. The only difference is they are making choices connected to peoples' lives. The choice they make is the difference in pain or no pain. The difference in mobility or non mobility. The difference is earning a living or not.

They have set themselves up to be revered. As the experts. And people do believe the word of the consultant is final. In doing so they are setting themselves up for a fall; literally. They have to understand that having the title of Doctor doesn't mean mistakes can't be made. Unfortunately, many people who rely totally on the word and actions of the consultant are in the older catagory, those who perhaps don't have access to the internet, or access to the experiences of others who are experiencing similar symptoms or problems. This, when they could be pro active and asking for better treatment.

Becoming better informed means accessing as much material as possible. The internet holds a wealth of information but must be viewed with scepticism. There are many sites that give advice and information with varying degrees of acuracy. There are some advocating treatments that can cure rheumatoid arthritis. As anyone who has RA will tell you, it is possible to go into remission but there is no cure. I, for one, was told that I would have RA for life. Groups or forums give sufferers the opportunity to discuss treatments and symptoms, it also allows sufferers to give support and advice.

Books are also a good source of information. There are books that explain rheumatoid arthritis as to what it is and the medication that is used to treat it. Others are self help books and these I think are much like the websites available. They advocate treatments, diets, supplements and exercises. There are foods that can help as does exercise. Supplements are useful if prescribed by a doctor, I take a calcium supplement as I have a lactose intolerance, my rheumotologist insists I take this supplement daily. There are other supplements a consultant will prescribe such as glucosamine for osteo arthritis, but other supplements can be dubious and it is always advisable to discuss a supplement with your consultant or doctor be taking it in case there is a reaction with any prescsribed medication.

Self help groups bring together people who are affected by the same illness or disease. It is helpful to be able to discuss symptoms and discuss treatment. Knowing that you are not alone is reassuring. A disease like rheumatoid arthritis is disabling and many sufferers feel cut off from society through that disability. Even leaving the house can be difficult and it is a comfort if there is someone to take you to a group once a week or once a month. Some groups supply councelling services, hairdressers, lunches and offer outings.

However you access it make sure you are pro active and find out as much as possible about your disease. In some way it may save you some level of pain and stress.

You learn something new everyday!

Now being that I am a 60+ something lady I feel I am quite with it. I blog, as you see, I have a website, I use facebook and I twitter. I use the web a lot to look up things of interest and I e-mail and text my friends. I do use a telephone too but if I need to take my time the other ways of contact are better for me.

I was on facebook looking at a forum that Fred and I belong to and a lady asked a question about problems with her throat. Did other people have similar problems? She asked. She was told this was Cricoarytenoid Joint.

This joint is situated in the back wall of the larynx, it helps open, close and tighten the vocal chords during speech and breathing.

According to what I read on the internet about one in three people with Rheumatoid arthritis suffers from Criocarytenoid arthritis. But I had never heard of it.

The symptoms include:
: Hoarseness
:Pain when swallowing
:Sensation of having something stuck in your throat
:Pain when talking or coughing
:Shortness of breath

Many people, like me, have passed the problem off, or have mentioned it to a consultant but have not been told what it could be. I have seen an ENT consultant but all that came of that was to find I had a huge infection in my sinuses that had progressed to my lungs giving me pneumonia.

At present I have another problem with a herniated cervical disc and have increased my steroids dose. If along with the disc problem the problem with my throat persists I will telephone the Rheumotologist in two weeks, as arranged, and ask him what we can do.

I cough a lot, have sleep apnea (caused he says by the RA), have difficulty in swallowing (which I have told him, especially large tablets), a constant feeling of having a blocked throat and my voice has changed.

I am not sure if this is just me, but I have to say to my consultant 'do you think it could be....?' and invariably he says, 'Yes!'

My husband says he thinks that consultants don't want to be negative all the time and say this or that can happen. I agree but, when presented with a symptom they should be honest. I am a big girl I can take it so, why do I have to surf the internet to find things out and then present them to him?

Horray for the forums and groups I belong to. We support one another, reassure one another but we also help to educate each other too. That is the joy of being able to use the modern day technology.