I have had it said to me and read that having rheumatoid arthritis means you are fighting every day.
To a certain extent that is true and it isn't easy being in pain, having stiffness and being so tired all the time. But fighting can be tiring too. The more energy you put into fighting takes away the energy you need just to get through the day.
The energy needed to just get out of bed is an enormous amount then washing or showering if, like me, you can't manage a bath. After that you have to use a bit more energy to get dressed even if you get help. Breakfast for me is porridge which gives me a long lasting energy boost and I eat this with natural yogurt followed by a herbal tea and then my tablets. I cannot rush any of this and need help from my husband to manage them. If I need to go shopping he has to stow the wheelchair in the car, find the shopping bags, draw up a shopping list and get me from the house into the car. By the time I get there and am settled I am exhausted. At our destination he has to find a place to park at our local supermarket as they have had the car park up for a few weeks now and if the two remaining disabled parking places have been taken then he has to park on an end of a row if possible so the chair will get down beside the car. Nothing is more frustrating for me is finding a non disabled driver parked in a disabled space when I am struggling to get into my car when there is insufficient room to get the car near it.
The real battle begins when we get into a shop; any shop. Invariably the aisle I need to get to is blocked by someone stacking the shelves and the wheelchair, with attached trolley, is too large to get by. Then there are the displays dotted around the stores ripe for a wheelchair and trolley to knock down. It is really stressful when you negotiate an aisle only to find you can't get out the other end as a display is parked in your way. And the pillars in the supermarkets near here are erected at the end of aisles too and I can honestly say that it is really, really painful when you have to struggle to negotiate around the pillar into an aisle and you catch the wheels and jar your back, neck and hips. Smaller shops are worse still they are so packed full of stock there is no room for a wheelchair user to get round. But it isn't just wheelchair users people using walkers, crutches and walking sticks are hampered by thoughtless shop keepers and management.
But should we fight to live daily? Or is it better to just look on it as a minor hiccup and laugh it off? I am of the opinion that we should fight for our rights and endeavour to get all shops disabled friendly. But of course this is tiring and a long, gruelling battle. If we just accept things cannot change or will not change then we are giving the impression that we not worth anything better.
When people say that things can't be that bad and really arthritis is just a pain and they get pains too, they are not understanding what people with chronic illnesses and diseases have to cope with all day, every day. Chronic illness is a daily battle to get through the 24 hours of every day and when you get to bed at night pain can and will keep you awake.
Being laid back and accepting whatever life throws at you is a wonderful concept but when you have a daily fight to just live wouldn't it be wonderful if the rest of the world made it just a little bit easier?
Showing posts with label pain. Show all posts
Showing posts with label pain. Show all posts
Wednesday, 11 April 2012
Sunday, 18 March 2012
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.
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.
Saturday, 4 February 2012
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.
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.
Tuesday, 17 January 2012
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.
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.
Saturday, 14 January 2012
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.
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.
Thursday, 12 January 2012
Staying positive.
We woke this morning to a very grey, foggy, damp, cold day.
The nurse came to do my blood test and give me my methotrexate injection. She was very cold and said the fog was quite dense. We had to go shopping and visit the pharmacy so we wrapped warmly and set off. The thermometer in the car was registering minus 1 as soon as we left home.
The local market town was freezing. I had a thick jacket, hat, boots and gloves but still felt cold. We went to get my medication and then did the shopping as quickly as possible to get home. Luckily we didn't have to wait around too long and we were on our way home. By this time my hips, back, and neck were agony.
The wood burner in the kitchen was warmly welcoming. A hot cup of coffee went a long way to warm us up on the inside. I was insistent that I help prepare lunch and dinner but the pain in my hands made things very difficult but being so stubborn I ploughed on.
After lunch we sat by a huge log fire in our lounge with a cup of tea and a good book. Where better on a horrid day? Curled up in my big armchair is was fantastic, watching the flames and feeling the warmth made me appreciate what I have.
Unfortunately the methotrexate always make me feel quite unwell but I am so stubborn I don't want to give in unless there is nothing else for it.
Methotrexate has not done me any favours. Dizziness, sore throat, itching, hair loss and problems with my lungs. I had pneumonia twice in four months. One of the side effects noted about methotrexate is that it causes mild hair loss but for me I lost all the hair on my legs, bikini line and under arms.
I also take prednisone daily. The side effects of that are also very distressing. The weight gain around the abdoment, the dowger hump, the round 'moon' face, acne (for me this has been mainly on the chest, arms, buttocks and occasionally on my face. I have developed diabetes, I have osteopenia in my left hip, high blood pressure and where I have lost hair in certain places I have an inordinate amount of hair on my face. I am lucky that I am very fair so the hair is not as noticeable as it could be but it is there.
In October I was hospitalized with a herniated cervical disc. On admission I was also found to be diabetic. After initially increasing the dose of prednisone over a month while the disc healed, my rheumotologist decided it might be prudent to lower the dose slowly over the next few months to get me off the steroid. I was happy with this arrangement but I am amazed to find that since lowering the dose I now have hairy legs! I was shaving my legs lightly every three months now if I leave it I shall be plaiting the hairs! Still no hair under the arms though, but I do believe that I am seeing less hair on my face. The dowger hump has gone and I have noticed a great change in my face which looks less moon faced. As I was put on a diabetic diet I am losing weight which is good news for the arthritis, the diabetes and the high blood pressure.
I still get pain though which perhaps is due to the lower dosage of steroid but until the blood test results come back I really don't know. My neck has been in so much pain that I have temporarily increased the steroid after talking to my rheumotologist, he has that this is for two weeks but if the pain and the side effects of the disc continue then we will have to discuss the matter.
I have enough problems with the pain Fred gives me without the cold and damp weather we are stuck with at present. Managing Fred, coping with the pain, trying to get off of medication is very stressful which plays right into the hands of the auto immune system and throws that right off kilter.
But stay positive. I am positive it hurts, I am positive I am fed up with Fred, I am positive I hate my medication, I am positive I loathe the side effects.
The nurse came to do my blood test and give me my methotrexate injection. She was very cold and said the fog was quite dense. We had to go shopping and visit the pharmacy so we wrapped warmly and set off. The thermometer in the car was registering minus 1 as soon as we left home.
The local market town was freezing. I had a thick jacket, hat, boots and gloves but still felt cold. We went to get my medication and then did the shopping as quickly as possible to get home. Luckily we didn't have to wait around too long and we were on our way home. By this time my hips, back, and neck were agony.
The wood burner in the kitchen was warmly welcoming. A hot cup of coffee went a long way to warm us up on the inside. I was insistent that I help prepare lunch and dinner but the pain in my hands made things very difficult but being so stubborn I ploughed on.
After lunch we sat by a huge log fire in our lounge with a cup of tea and a good book. Where better on a horrid day? Curled up in my big armchair is was fantastic, watching the flames and feeling the warmth made me appreciate what I have.
Unfortunately the methotrexate always make me feel quite unwell but I am so stubborn I don't want to give in unless there is nothing else for it.
Methotrexate has not done me any favours. Dizziness, sore throat, itching, hair loss and problems with my lungs. I had pneumonia twice in four months. One of the side effects noted about methotrexate is that it causes mild hair loss but for me I lost all the hair on my legs, bikini line and under arms.
I also take prednisone daily. The side effects of that are also very distressing. The weight gain around the abdoment, the dowger hump, the round 'moon' face, acne (for me this has been mainly on the chest, arms, buttocks and occasionally on my face. I have developed diabetes, I have osteopenia in my left hip, high blood pressure and where I have lost hair in certain places I have an inordinate amount of hair on my face. I am lucky that I am very fair so the hair is not as noticeable as it could be but it is there.
In October I was hospitalized with a herniated cervical disc. On admission I was also found to be diabetic. After initially increasing the dose of prednisone over a month while the disc healed, my rheumotologist decided it might be prudent to lower the dose slowly over the next few months to get me off the steroid. I was happy with this arrangement but I am amazed to find that since lowering the dose I now have hairy legs! I was shaving my legs lightly every three months now if I leave it I shall be plaiting the hairs! Still no hair under the arms though, but I do believe that I am seeing less hair on my face. The dowger hump has gone and I have noticed a great change in my face which looks less moon faced. As I was put on a diabetic diet I am losing weight which is good news for the arthritis, the diabetes and the high blood pressure.
I still get pain though which perhaps is due to the lower dosage of steroid but until the blood test results come back I really don't know. My neck has been in so much pain that I have temporarily increased the steroid after talking to my rheumotologist, he has that this is for two weeks but if the pain and the side effects of the disc continue then we will have to discuss the matter.
I have enough problems with the pain Fred gives me without the cold and damp weather we are stuck with at present. Managing Fred, coping with the pain, trying to get off of medication is very stressful which plays right into the hands of the auto immune system and throws that right off kilter.
But stay positive. I am positive it hurts, I am positive I am fed up with Fred, I am positive I hate my medication, I am positive I loathe the side effects.
Wednesday, 11 January 2012
Herniated cervical disc flares again
Last October I was hospitalized for a month with a herniated cervical disc. I had to wear a cervical collar, take strong painkillers, not lift, not turn my head, take increased amounts of Prednisone and just rest.
My rheumatoid arthritis was diagnosed in 2008 and has spread through my body. The last places it appeared were my neck and my jaw. In 2010 I started to feel very dizzy, have pain in my neck, shoulder and top of my back and also numbness in my left hand. The dizziness became quite a problem as I started to fall and it was then my husband took me to the hospital. I had a scan and was told it was the cervical disc that was herniated to match one in my lower back. Between the two I have a great deal of pain and walking is very difficult. I use a wheelchair because of the pain but sitting is as uncomfortable as walking and at times even lying down is painful.
I have looked into the options for pain relief. I use a TENS machine which I like as it is easy to use and no medication is required, heat pads and cold pads are brilliant but only give temporary relief, strong painkillers work well but if I take the amount recommended by the Rheumotologist I get stomach problems.
People are not very helpful with their comments.
I get a bit of pain now and again.
You should do more/less exercise.
Arthritis is only for old people.
Its mind over matter, just get on with it.
Its only arthritis it can't kill you.
At least its not cancer.
So many people are not well informed and don't understand about rheumatoid arthritis and what it can do not only to your joints but other parts of the body too. It can cause dry eyes and mouth, pleurisy and heart problems. It is also recorded that people with rheumatoid arthritis have a shorter life expectancy. Due to the steroids I have also developed diabetes.
I was told if I can come off of the steroids there is the possibility the diabetes will clear up. In December I saw the rheumotologist and he was pleased with the way the disc was healing so I started to decrease the steroids. I have had pain but have stuck with it. Then a few days ago I started to feel pain in my neck again. The dizziness returned and some numbness in my hand. I rang the rheumotologist and he told me to start wearing the neck collar again, take painkillers, increase the steroids, not to lift, don't turn my head; all the things I did last time. I had hoped to be off the steroids by April. If my symptoms are not better in two weeks I have to ring him again.
In the meantime I am reliant on my husband and family again and my independence has had to take a back seat for the time being. I can only hope that my disc repairs in the next two weeks.
My rheumatoid arthritis was diagnosed in 2008 and has spread through my body. The last places it appeared were my neck and my jaw. In 2010 I started to feel very dizzy, have pain in my neck, shoulder and top of my back and also numbness in my left hand. The dizziness became quite a problem as I started to fall and it was then my husband took me to the hospital. I had a scan and was told it was the cervical disc that was herniated to match one in my lower back. Between the two I have a great deal of pain and walking is very difficult. I use a wheelchair because of the pain but sitting is as uncomfortable as walking and at times even lying down is painful.
I have looked into the options for pain relief. I use a TENS machine which I like as it is easy to use and no medication is required, heat pads and cold pads are brilliant but only give temporary relief, strong painkillers work well but if I take the amount recommended by the Rheumotologist I get stomach problems.
People are not very helpful with their comments.
I get a bit of pain now and again.
You should do more/less exercise.
Arthritis is only for old people.
Its mind over matter, just get on with it.
Its only arthritis it can't kill you.
At least its not cancer.
So many people are not well informed and don't understand about rheumatoid arthritis and what it can do not only to your joints but other parts of the body too. It can cause dry eyes and mouth, pleurisy and heart problems. It is also recorded that people with rheumatoid arthritis have a shorter life expectancy. Due to the steroids I have also developed diabetes.
I was told if I can come off of the steroids there is the possibility the diabetes will clear up. In December I saw the rheumotologist and he was pleased with the way the disc was healing so I started to decrease the steroids. I have had pain but have stuck with it. Then a few days ago I started to feel pain in my neck again. The dizziness returned and some numbness in my hand. I rang the rheumotologist and he told me to start wearing the neck collar again, take painkillers, increase the steroids, not to lift, don't turn my head; all the things I did last time. I had hoped to be off the steroids by April. If my symptoms are not better in two weeks I have to ring him again.
In the meantime I am reliant on my husband and family again and my independence has had to take a back seat for the time being. I can only hope that my disc repairs in the next two weeks.
Monday, 9 January 2012
Thank goodness for the teapot
Today I have had need of my Teapot. I woke not feeling too good and then, due to my arthritis, I fell.
I already have problems with my hip and back so it was those that were affected. The pain has been quite horrendous and I have had to rely on my husband to help me. I have been resting all day knitting, reading, watching television and surfing the internet.
To deal with the pain I tend to use painkillers, heat or cold pads (depending on where the pain is)and I also use my TENS machine. I use it when the arthritis is in my hips, back, knee, hand, elbow and shoulder. It is easy as you can just carry on as usual while the machine pulsates and helps relieve the pain. I also try and take my mind off of the pain; which is not always easy.
I had plans today too which is annoying. I wanted to make soup, prepare some meals for a couple of days and to take my computer to the computer doctor. I am borrowing my husband's computer at the moment and it is just not like having my own.
In some ways I am glad I didn't have to go out as since last evening the weather has been terrible. All night the wind howled around the house and rain lashed the window shutters. Today the wind howled in the chimney and I could see the rain pouring down and hitting the window panes.
I have plans for tomorrow so I am hoping the pain and the weather will have improved by then
I already have problems with my hip and back so it was those that were affected. The pain has been quite horrendous and I have had to rely on my husband to help me. I have been resting all day knitting, reading, watching television and surfing the internet.
To deal with the pain I tend to use painkillers, heat or cold pads (depending on where the pain is)and I also use my TENS machine. I use it when the arthritis is in my hips, back, knee, hand, elbow and shoulder. It is easy as you can just carry on as usual while the machine pulsates and helps relieve the pain. I also try and take my mind off of the pain; which is not always easy.
I had plans today too which is annoying. I wanted to make soup, prepare some meals for a couple of days and to take my computer to the computer doctor. I am borrowing my husband's computer at the moment and it is just not like having my own.
In some ways I am glad I didn't have to go out as since last evening the weather has been terrible. All night the wind howled around the house and rain lashed the window shutters. Today the wind howled in the chimney and I could see the rain pouring down and hitting the window panes.
I have plans for tomorrow so I am hoping the pain and the weather will have improved by then
Sunday, 8 January 2012
One step forward - two back
I was exhausted, in pain and feeling decidedly not well. In the night I woke unable to breathe, my right eye was numb and so was my right foot. I told my husband but he didn't know what to do and as I couldn't move alone I was left to go back to sleep. Today I have similar symptoms but as he is unwell due to driving all day I am just getting on with it.
The arthritis is very active in my neck, hips and back today. I have a funny hand which I can sort of cope with. When my husband is feeling like he is today I feel really guilty that I can't do very much to help. He is my carer so I rely on him and when he is ill we are both in trouble.
I am going to have to contact my Rheumotologist and explain what is happening with me and see what he suggests. I desperately want to come off of the Prednisone which he is aware of, but now I am on a very low dose and I am having such bad reactions I need some advice.
Fred my arthritis and I are not on good terms, he is making my life very unhappy, painful and downright frustrating. I can't do anything to satisfy him and his demands are unrelenting. At least calling him Fred means I have someone to blame!
The arthritis is very active in my neck, hips and back today. I have a funny hand which I can sort of cope with. When my husband is feeling like he is today I feel really guilty that I can't do very much to help. He is my carer so I rely on him and when he is ill we are both in trouble.
I am going to have to contact my Rheumotologist and explain what is happening with me and see what he suggests. I desperately want to come off of the Prednisone which he is aware of, but now I am on a very low dose and I am having such bad reactions I need some advice.
Fred my arthritis and I are not on good terms, he is making my life very unhappy, painful and downright frustrating. I can't do anything to satisfy him and his demands are unrelenting. At least calling him Fred means I have someone to blame!
Give it a name and you have someone to blame!
My rheumatoid arthritis is called Fred.
No, I am not mad I just feel that when I am in pain, am exhausted, brain won't work I have someone to blame. That is where Fred comes in.
Today I sat in the car for hours and Fred is now complaining. Fred needs soothing so it is the head pad, TENS machine, rest in a comfy bed, painkillers and indulgence. Fred gets quite upset when I try and exercise, walk, be independent. But do I give in to Fred? Sometimes, like now, I will rest and let the screaming joints calm down. Other days I will keep going and going and going until I am in tears. I don't have the word pacing in my vocabulary and my husband will keep on about pacing yourself, you know it is best in the long run but I want to finish what I started.
When I get to the stage I am at this evening I need help. Help to undress, help to get ready for bed, help to get into bed; I feel like a baby. My husband cooks the food and cuts mine up to help me. I am very lucky but sometimes I don't show my appreciation.
I don't like asking for help and my husband says I am my own worst enemy. I feel so guilty you see for being ill, for having problems in doing things, not pulling my weight in the house and for having to ask people to do even simple things for me.
When I say this I am told that he wouldn't do some much for me if he didn't love me like he does. He knows how to make me cry!
The worst part is when I have a flare in my rheumatoid arthritis it is preceded by a change in my temperament. The poor man can't do anything right, but he carries on exactly as before doing things for me and helping me.
That is love.
No, I am not mad I just feel that when I am in pain, am exhausted, brain won't work I have someone to blame. That is where Fred comes in.
Today I sat in the car for hours and Fred is now complaining. Fred needs soothing so it is the head pad, TENS machine, rest in a comfy bed, painkillers and indulgence. Fred gets quite upset when I try and exercise, walk, be independent. But do I give in to Fred? Sometimes, like now, I will rest and let the screaming joints calm down. Other days I will keep going and going and going until I am in tears. I don't have the word pacing in my vocabulary and my husband will keep on about pacing yourself, you know it is best in the long run but I want to finish what I started.
When I get to the stage I am at this evening I need help. Help to undress, help to get ready for bed, help to get into bed; I feel like a baby. My husband cooks the food and cuts mine up to help me. I am very lucky but sometimes I don't show my appreciation.
I don't like asking for help and my husband says I am my own worst enemy. I feel so guilty you see for being ill, for having problems in doing things, not pulling my weight in the house and for having to ask people to do even simple things for me.
When I say this I am told that he wouldn't do some much for me if he didn't love me like he does. He knows how to make me cry!
The worst part is when I have a flare in my rheumatoid arthritis it is preceded by a change in my temperament. The poor man can't do anything right, but he carries on exactly as before doing things for me and helping me.
That is love.
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