Hello Loxie......I am glad I am not the ony one feeling like this - but many just don't understand and see what I am going through !! It is probably because I STILL keep doing things which I find so difficult to do and leaves me with pain/tiredness afterwards. What I can't manage, just doesn't get done !!! Do you find also that when you over work or carry too much, your arms/legs feel so heavy? That is the way it always is with me.....would like to be able to strengthen my muscles, but can't manage exercises, due to tiredness. Often when I sit in a chair during the daytime, I just go to sleep.....something I never use to do or want to do - but my body seems to need it. Todate I have never found a doctor that can really help me with my problems.....they never give enough time or really understand. How do you manage to keep going?
To answer the question how do I keep going - really - I have no idea, we just do dont we. I'm finding it all very hard work to be honest. I take note of all the helpful comments and 'good ideas' on forums like this but in reality it's still a struggle. I dont think there's an easy answer, I just keep trying to cope daily with whatever new pain or symptom dumps on me. I have OA in one ankle, in my upper spine, both thumb joints and because of the ankle I now have it in one knee. I have extensive muscle pain and fatigue too. Honestly ? There are days when I feel it's all not worth it but luckily that feeling doesn't last long and if I'm lucky something cheers me up again. I get very short tempered, mainly due to the pain and exhaustion and then I feel guilty that I've snapped at someone trying to help me. I also get annoyed at myself for being such a whiner or a wimp. hey ho. Stress plays a huge part I believe in my tiredness. I worry about things that need doing that I havent done or cant do. I worry about losing my job - fortunately I work from home but even that gets too much at times. I worry about going anywhere and how I'll manage to do the shopping or travel or visit someone etc. I have stopped accepting invites to go out because I worry I won't cope with a long evening or activity. Then I realise that all this worry is just making things worse and if I only just relax, it will help enormously. Easier said than done eh. The double whammy of things like arthritis, fibro, CFS, etc., is that one has to cope with the disease then on top one has to cope with the pure effort of doing anything 'normal'.
I agree - over working and carrying are both killers. I do some shopping and am careful not to lift anything too heavy but walking around a supermarket and even putting away groceries into cupboards etc will spark a flare up that can last a day or two. Then I get upset at being so useless. It's not just the pain or exhaustion, which are bad enough, its the loss of self esteem and self respect on top. This all sounds dreadful and whiney - I try mostly to keep all this to myself and friends think I'm a jolly person but then in private I weep at times. I look at disabled achievers - athletes, etc., who cope with terrible physical disability and feel such a loser but it's not just the disability of OA, its the overwhelming never ending pain and tiredness that get to me. Sorry for being so downhearted, I just find these forums the only place people really understand what we're going through. Youre right about doctors - most I ever get is about 5 minutes flat and am only permitted to speak about one single problem - when you have multiple issues it would be so much more helpful to be able to cover the problem wholistically, I'm sure many things are linked and should be treated in unison.
Carol,
I completely understand what you are saying about the quality of care given by alot of drs today. My sister had severe pain through out her cchest and left breast for 16 yrs, she went all over even New york with no relief. MRI's, Ct bla bla. Finally she found a dr who Listened and was able to give her some relif. So please don't stop looking for another dr, there are good ones who listeen. I feel for you!
Mary
Hello.....we sound similar how we cope with our pain and every day life. I also get short tempered at times, when I can't manage like Others can...even older people can do more than myself. I am always hoping that there is some medicine that will strengthen my muscles. You say you have muscle pain, is that through weakness? Shopping is also a great strain for me too....next day I am tireder and have more stiffness/pain.....but of course I still continue to do it. What frustrates me so much, is that I get no help from my husband.....I don't think he realises there is anything wrong; but then he is lazy anyway!!! So I am on my own with dealing with everything. Unfortuntately our problems are not visible, though tiredness does show in our faces.....I think many believe we are just lazy when we don't do things around the home (I haven't been able to clean windows for years and my curtains need washing too....but I have noone to bring them down for me - so they are just left, which is terrible!!!) . I always avoid appointments in the mornings because due to terrible stiffness/pain I can't get going until a few hours after getting up. I am able to get more done in the evenings, if I haven't had a bad day......so go to bed always late and not before I am tired, otherwise I can't sleep. I agree it is also the tiredness that gets me down.....my biggest hinderness - on small rests in between keep me going.
I see you have OA in your ankle....do you also have swelling? I also wonder if I have it there too, because my ankles are always swollen and more so when it is hot. I have been to doctors about this, but still don't know why my ankles get swollen....in the mornings they are normal. I have OA in my joints......upper and lower spine (maybe also shoulders),
knees and badly in all my fingers/thumbs. The back of my hands are so shallow, as I have lost all the muscles there...giving me little strength in my hands. I used to write /sew/knit a lot, but they are not possible for a long time now. I tend to read books now, which I find very relaxing and take away stress (which I suffer with greatly) even for just a short time !!
A hobby helps to take stress and pain away, because it gives us pleasure. This Forum is a great help too, as Others understand what we go through...it is awful being on our own with our problems.
In my case, I have two separate issues. The first is OA. My ankle developed it following a nasty accident which caused compound fracturing and subsequent loss of cartilage. I had plates and bolts inserted and the ankle is somewhat misshapen now. It isnt swollen most of the time however, only if I spend too much time walking or standing. I've had issues with my thumb joints for many years, original diagnosed as tenosynivitis and now assumed to be OA, again they only get swollen if I over use them but generally its 'invisible' but extremely painful and restricting. For the last three to four years I've had a more generalised pain syndrome with chronic fatigue and memory 'fog' which my GP initially thought may be fibromyalgia. This affects my muscles in arms, legs, back and midriff but is not anything to do with joints as the OA is. It is there all the time but when I'm stressed or try to do too much it flares up and is truly horrible. I was referred to a neurologist, primarily because of the memory and cognitive issues, who stated I definitely didnt have any neurological cause, that the fatigue and memory issues were probably caused by the pain wearing me down. He referred me for an MRI scan which I had recently. This showed I had OA in the top of the spine (OA the disease that keeps on giving!). This is now causing me neck, upper back and shoulder pain but again isn't directly linked to the muscle and soft tissue pain I also have. I then insisted my GP refer me to a rheumatologist. 3 months later I got seen. She doesn't seem to think its fibro but may be excess iron in the blood (haemochromatosis), which can cause liver damage and heart problems (oh great joy). She referred me for blood tests and I'm still awaiting the results of those. I sense that my muscles are weakening or shrinking but I've taken to measuring my biceps and realistically the loss of muscle tone is very slight and probably only because I can no longer go swimming which I used to do frequently. It's difficult to explain but the mind thinks the muscles are withering because they feel so weak but really they arent, theyre only weak because of the pain experienced. I'm no further forward as to a diagnosis for the muscle and lower back pain therefore. I appreciate I'm stuck with the OA and to be honest no matter how painful that is, I sort of 'understand' it because it's been diagnosed and at least I know what I need to do to minimise the symptoms if possible. Its frustrating to need help to do things I used to do myself but most of the time I find ways around the difficulties. The undiagnosed fibro type symptoms are the ones that are hard to deal with and I'm exhausted trying to find a cause and a cure!
Hi Loxie,
I have OA and I had surgery (6/29/16) for 1st, 2nd metatarsals, still recovering. I've had severe pain in my foot for 5 yrs. In my hands which I stopped over using them and the pain stopped. I also get Buchards nodules on my hands, ugly,!. But, my question is I also have Hemochrotosis for yrs. I get phlebotomies to get my ferratin down. Why did the Dr suspect hemochromotosis for you? Why the t tests? I agree overuse with OA is the cuulprit but, sometimes you can't help it!.1 Good Luck, mary
So sorry to hear of your problems Mary, my sympathies. The Rheumatologist just said she wasn't convinced my issues were fibro and then started talking about her suspicions about haemochromatosis. She said aches, particularly back ache around the liver area, tenderness on the skin in that area and chronic fatigue, plus the increase in arthritis locations I have are symptomatic of excess iron and said a ferritin test would determine if that was the cause or not. She did say that if the test proved positive I would need regular blood taken - small price to pay if it prevents serious liver damage or heart damage and eases my symptoms.
The problem with OA is sometimes it just flares up for no reason even if I havent overused the joint but usually I can get the pain to bearable levels with low doses of anti inflamms and natural remedies. The muscle aches I have dont seem to respond to absolutely anything yet.
It's great if you have nipped this hemochromatosis in the bud then you can get started on the phlebotomies. No need to feel soory for me I have no pain or discomfort, I'm just glad I finally found out. Mine ferratin was 1840, dr wants it to be >100. I'm a registered nurse and accidenly got stuck by a needle, after numerous tests they found the high ferratin. From there I went to a Hematologist, Dr, and get tested every 4 months. Do this or there could be serious damage. Hope you start feeling better.
Mary
Hello Jane I suffer from Oesteoarthritis but I have just found out that is what it is well they did not diagnose it they said it looks like it is Oesteoarthritis. Fatigue has a great part in my life and this is what I put it down too I have just read that up to two thirds of people with arthritis have a condition called anemia of inflammation which occur.s when infalmmatory cytokins interfere with the body's production of red blood cells. I was diagnosed with having low white blood cells some time ago whether this is the same I do not know
I have OA in my knees, hips and back. My Orhopedic told me I need a knee replacement. I am wondering if anyone had this done with multiple areas affected by OA. If I have the "bad" knee replaced am I going to be able to walk a half block without getting exhausted? Just running the vacuum cleaner leaves me hot, sweaty and very tired.
re SWIMMING. Even for non swimmers you can get exercise in the pool using a woggle (noodle). Make it into a U shape and sit astride whilst you do a cycling movement or kick straight legs to and fro, or scissors. You do need to be just deep enough for your feet not to touch the floor. You can hold the woggle up in front of you or just use your arms to pull yourself around.Some pools will lend you a woffle or you can buy for very little. I have recently had a hip replacement and find this helpful although I am a swimmer and like to do back stroke. As I cannot kick legs vigorously yet I hold float between my knees and just do backstorke arms.
You do not have to know how to swim to benefit from water exercise. I cannot swim and hate getting my face wet LOL. I take water exercise classes at the local rec center and they have definitely helped the arthritis in my knees, etc. It feels so good to be able to move in the water without pain. One of the classes is simply walking different ways in the pool. I don't know if your foot problems would interfere with that or not.
Hi
I have similar problems as yourself I have also been told that I have fibromyalgia.and the Fibro Fog that goes with it. I also have Bronchtisis and I have been informed that I have disfunctional Breathing. which flares up from time to time especially more when I am stressed out,or when I am tired. Other people, including members of my own immediate family are not very tolerant to the above and often say, do something to take your mind of your aches and pains! little do they understand that when you are in the situation of the above it is not as simple as taking a painkiller for a headache
Jane I have osteoarthritis and also feel exhausted a lot of the time and it really gets to me at times , I have 13 year old twin daughters and it feels I do less and less with them as I'm always tired xx
Not sure if I should be happy or sad but they have ruled out haemochromatosis, my ferritin levels were okay. Good that I dont have a serious condition that needs long term treatment, not so good that I'm back to square one in not knowing what is causing the terrible pain and fatigue symptoms I have. I'm still on the merry go round of being referred here there and everywhere, waiting six months at a time each time only to be referred somewhere else. I did have a brief appointment with a physio therapist and whilst he didnt actually do any therapy, he did sit and talk - and more importantly listen, and said he regularly sees patients with fibro and he is convinced from hearing my range of symptoms that it is fibro. He said there are new spinal fluid tests that can positively identify things like lowered levels of dopamine etc., which are a more efficient way of diagnosing it rather than the imprecise method of testing 'pressure points' previously used. Back on the treadmill of doctor/rheumy/etc etc I guess.
Thanks for the reassurance. I've been suffering fron fatigue for quite a few years and I also have a Gluten intolerance so I thought it was that.
Phil
Thank you for mentioning this Fybromyalgia as a probable cause of 'realted pain'. I thought my pain in the groin and back were related to the rcently diagnosed OA in my right hip (by MRI). I'm due an injection in my hip in a couple of weeks and if that does not provide relief I'm going to ask for tests for Fybro. I seem to have developed auto immune conditions since a flue jab in 2014, including problems with my gut (have thought it was gluten intolerance, which it might be of course).
Fatigue, poor sleep and not being able to walk much is the worst thing though and what I can only describe as mild depression and increased anxiety about my health does not help.
Good luck with your situation.
well no fibro or poly myalgia. but i have a vitamin d defieciency. I`ve been sacked from the nursing agency as i kept cancelling shifts as I was in too much pain to do a 12.5 hr shift. I`ve ended up in alot of debt not being able to pay stuff BUT i have a new little job that I love, just 6/7 hrs a day 5 days a week. Its a drop in money but at least i`m earning. Yes i get through it with my codeine but hopefully now i can get back on track.
I also have an underactive thyroid which definitely causes fatigue and I think that constant pain can be exhausting too. Carrying out simplest of household tasks leaves me needing to sit down for a rest as I ache so much.
I too have osteo arthritis in my knees but I am fatigued all the time! I could literally go to sleep at any time of day. When I have done the smallest amount of housework I have to sit down and wait a while until I 'recover'. I also feel depressed sometimes and worry about travelling to go on holiday as I get so tired. Doctors these days are so busy I do not like to keep bothering them. I hope you can find a remedy - sometimes I think painkillers make matters worse and I take so many tablets I just want to try and get better without them. I also have high blood pressure for which I am on medication. Sorry to sound so negative and I hope things improve for you