Husband has just been told he has Tenosynovitis, with 'hypermobility' in his wrists, (extra bendy wrists) he has reddened and swollen tops of both hands, hands can often feel stiff and most days his fingers lock tightly together, cramp like which is painful.
Other symptoms are:-
Muscle aches and Muscle weakness
(holding up a kettle and pouring action or holding a home phone to his ear for a while can cause a weakness in arm muscles.)
Muscle leg and toe cramps
Tingling in hands and fingers
Tiredness
Tinnitus
Blood test for Rheumatoid Factor = <20 (range < 30)
He has been told he has rheumatism in his foot due to an old injury and rheumatism mentioned several times in connection of his hands, but has been told he doesn't have Rheumatoid Arthritis.
We just need to know if this is correct or not as it is all a bit confusing.
Also can anyone shed any light on his other symptoms or connect anything else together please.
Many Thanks.
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Coastwalker
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I suffered with tenosynovitis back in the 70s and it was considered a work injury. I was working in a cardboard factory at the time. Your hubby could still have Ra as it is not only the blood tests they go on. It doesn't happen overnight to get a diagnosis. It took nine months for me to be told i had RA,so don't despair. Your hubby might or might not have RA just be patient and let the drs do their tests and see what comes out of the end of it. There are others on here who have more qualified advice than i have as i am only a lady with it. So don't despair.xxxx
You say you 'had' it back in the 70's, so is it a type of injury that can be corrected, or are you still 'managing it' ? if cured how did you manage to cure it ?
Your not nosy so don't worry about that. I used to push cardboard into a machine and i mean huge sheets of cardboard and that is how i did it in the first place. It did get better but it took months of work before it settled down. I don't think i had much trouble with it over the years,perhaps a little twinge here and there, but i got out of that job so the problem went away. My right side of my body has the RA in it and i do have some aches and pains there now,but overall it went away. I was young then and things are different now.You don't say how old hubby is,i am assuming he is a lot older than i was when it happened to me. Also there is a lot better treatments these days. Keep me informed on how your hubby gets on. Any more questions you want to ask so feel free.xxx
We will look to the positive side on getting him well, he has been given splints for his wrists and physio putty, (exercise for his hands. ) and we are dosing him up on vitamins B12 patches and Vit D3+K2 and are looking into the wonders of magnesium.
I have just started on magnesium so we will see how it goes. That was much of the treatment i had back in the 70s. I had the putty as well and it was fun to use. You are doing all the right things, tell hubby to be patient as it will take months for it to settle down. I hope he goes on alright.xxxx
That's interesting that you too are on the magnesium sylvi, and back in the 70's too. So much now is being learn't about vitamins and minerals.
Vitamin levels, I read were set back in the 60's so a bit outdated they are saying.
I'm getting quite into checking out what vitamins can help fight illnesses and which doses are needed.
We thought we were getting 'old' too soon, but I think our health problems could be more connected to lack of vitamins and minerals in the soil and in our vegetables, down to the way they are grown these day.
Is your doctor a "mature" person by any chance? I've noticed that older docs use rheumatism as a very general term for having problems in your joints and the tendons etc connecting them, and it doesn't indicate any specific disease - of which there are loads and loads! Younger docs seem to use musculoskeletal disorder or connective tissue problems as the general terms.
Anyway, there are lots of different things under this heading and as Sylvi says it can take a while to pinpoint exactly what you might have if anything. It could just be tenosynovitis, and that can go away. But there are other types of inflammatory arthritis, so the important thing is to keep pushing for a diagnosis. Are you seeing a rheumatologist or just a GP? As step 1 is to get referred to a specialist who can do more specific blood tests as the RF factor isn't very precise. It's good that he has a negative RF factor, but that doesn't really confirm anything as you can be sero-negative and still have inflammatory arthritis. And if you are seeing a. Rheumatologist then keep pushing for more tests, and perhaps ultrasound of his hands to see what's going on. This can be a battle of perseverance I'm afraid, as all rheumy departments are far too busy, but keep asking questions until you get an answer that seems right. Good luck.
Rheumy said nothing was wrong with muscles apart from worn tendons and getting old
Didn't say much about hands/wrists either.
I read out other symptoms as above, even queried thyroids, but Rheumy ignored other symptoms. I mentioned Creatin Kinase and Bilirubin bloods were abnormal, but that was dismissed.
So if nothing was wrong with Hubby's muscles why were his muscles aching and he in so much pain with them, his whole body ached and he was feeling so tired, so ill, as though he'd aged quickly in a year, we just knew it wasn't down to old age.
I found out the Bilirubin abnormal blood test connected with B12 deficency (and pernicious anemia,) the abnormal high Creatin Kinase blood has an inverse effect on Thyroid T3, Doc kindly tested T3, when I mentioned it, but it came back as low, normal.
Then found out B12 deficency mimics Hypothyroidism, B12 deficency connected with many of his symptoms. His B12 blood came back as normal, but was very low, normal and have found out from thyroid members that it needed addressing, (low B12 is connected to Alzheimers and dementia.) we now use the high dose B12 Vie patches, it certainly got rid of the tiredness.
We have also added some D3 as advised on the 'Vitamin D Council' (good for getting rid of cramps/sciatica pains) and and now looking into buying the best type of magnesium, zinc ,selenium, iron, etc..
Hi, don't know if they explained to you/your husband what tenosynovitis is so in case not here goes -
it's inflammation of the sheath that covers the tendon (rather than the tendon itself) and is most usually an RSI problem. The tingling is almost certainly caused by it as all the nerves that serve the hands run through a narrow space called the carpal tunnel and any swelling reduces the space and causes pressure on the nerves resulting in pins and needles at best and pain/parasthesia at worst. Gentle exercise to keep things mobile whilst trying to avoid any activities that exacerbate the problem and anti-inflammatories usually sort things out but it can take a while to calm down. As for the other symptoms, I'd suggest you go back to your GP if they're still bothering hubby once the teno has cleared up and make a nuisance of yourself until you get some answers. Sadly it's not uncommon for people without clear blood markers to have to fight to get a diagnosis. Wrist splints might be a good idea as the hypermobility mobility puts him at greater risk of sprains etc. Your GP might be able to arrange a referral to Occupational Therapy - wonderful people who can suggest the right equipment for hubby and give tips on day to day management. I hope things clear up quickly x
I have 'googled' Tenosynovitis already, but it is good to hear real people talk about it also, (more reassurance, )
Hubby also has the wrist splints (and putty. )
We have gone back to ask about other problems, but they are being put down to work (muscles and tiredness,) which we don't think is the answer as the problems have suddenly come on and not gradually as old age I guess would. So looks like we have to work it out ourselves as usual.
Like I mentioned before the B12 patches, with added other B vitamins have helped both of us for tiredness and energy, so that's one problem solved.
Have read that there are two active forms of B12, Adenosylcobalamin is for muscles, and so will experiment with this pill too, seeing that Hubby was very low in B12.
The B12 patches we use have the other active form of B12, Methylcobalamin and I have just this second looked up the spelling for it, happened to click onto a tempting website as you do and can't believe what I have just read
Methylcobalamin is needed to produce Myelin, the fatty substance that forms a sheath around nerves, (also an energy production and helps depression.) That has to be connected hasn't it ?
I am so pleased you posted to me mistymeana, also with a bit of luck and timing thrown in too, otherwise I may not have stumbled upon that bit of important information, certainly hadn't read that bit about Methylcobalamin before.
Thank Q
X
Am now wondering if this bit of information would help anyone else on here with similar problems, is it worth a separate posting mentioning it mistymeana. ?
It's frustrating that diagnosing inflammatory arthritis can take so long.
I was pretty sure I had RA prior to diagnosis but my GP went all round the houses with various tests for various things, I added to the confusion by googling for England, the wait to see a rheumatologist was a long one & so on & so forth. Eventually I was diagnosed with Psoriatic Arthritis.
If your husband does have an autoimmune disease (or even if he doesn't) Google may be a false friend for you both. Autoimmune diseases are complex and throw out a lot of different symptoms at different times - you may well end up thinking he has a very exotic combination of problems!
Rather than looking for underlying symptoms, I reckon you should focus on those you describe so well in your post - the tenosynovitis, the pain, the tiredness. So often when trying to get a diagnosis, less is more. And how persistent the symptoms are is very relevant - for example if the tenosynovitis lasts that in itself may lead to a diagnosis.
And if these symptoms are persistent, you need to be too. Keep going back to the GP with the same clear message, speculating about more technical things may rile him or her, so stick with the basics which seem quite bad enough to me!
Like Polly, I don't like the sound of the rheumatologist you saw either. 'Rheumatism'? For goodness sake! You have the right to ask to see a different rheumy for a second opinion (ideally at a different hospital). If asking for that seems like a bit of a cheek, it's not - people do it all the time because getting a diagnosis matters.
Hi reef, seems to me that more & more people with PsA are showing up here - perhaps it is being diagnosed more frequently? I'm not doing too badly, thanks.
Yes you are right about the frustration of waiting and whilst we're waiting the long wait we go down hill faster, hence the 'googling.' Most people are guilty of 'Googling' their illnesses. Though I look for positive ways of healing and ignore the as you call them 'Exotic diseases' (your description did amuse me )
Sorry to hear you have been diagnosed with the Psoriatic Arthritis, postal, hope you are not in too much pain,? though I'm sure it is good to eventually get a diagnosis.
I am reading so much about how others are being diagnosed wrongly and then finding ways of healing themselves, so if our pain or tiredness persists, that is what you tend to do, we go down the self healing route.
I read postings and talk to many forum members about their self healing and learn so much.
We'll try anything once
We'll ask the Doctor next time we see them about the rheumatism bit, that has puzzled me.
We had a feeling when we entered Rheumy's room that Hubby wasn't going to get anywhere because of his mannerism when he invited us in, he didn't look happy, more like he'd already had a bad day. We came away from the Rheumy's room and I said to Hubby, don't worry we'll get you better ourselves somehow.
Okay, I see where you are coming from a bit more. Just one thing occurs to me: before this disease hit me I was no fan of doctors or drugs. However the trouble is that inflammatory arthritis can do a lot of damage, not just to joints but to the heart and other organs. I do hope your husband doesn't have RA or any other form of inflammatory arthritis, but if he does then there are drugs that can tame the systemic inflammation and prevent the more serious outcomes.
It took a very long time to get my diagnosis and eventually I collapsed completely - ongoing untreated inflammatory arthritis really takes it out of you. But the drugs have helped so much that I now feel fine most days and can live life to the full again. I wish you & your hubby well with self-treatment but please be careful. And glad you're going to ask about the 'rheumatism'. I suspect he meant osteoarthritis which, while not exactly a walk in the park, is not too difficult to live with if limited to just a few joints. But bear in mind that that could be a mis-diagnosis.
Above I have apologized to all, I incorrectly called it rheumatism instead of 'arthritis',
I thought the two were the same, due to the name RA, still a newbie to it all with lots to learn. Do hope I'm forgiven.
Hubby was given some pills to help, but wasn't allowed to stay on them for long for some reason, we both can't remember what pills they were.
His hands are swollen up (inflamed as such,) and hurting, not sure if that would that be classed as inflammatory arthritis as you mentioned. ?
Will get Hubby to ask if there is anything to calm his swollen hands, though don't really like using pills these days, apart from vitamins/minerals/natural treatments as you read so much bad things about drug companies interested in profits only and not knowing what really is in the pills. You start off on one pill then end up having to take another to counter act that one and so on, I have seen it happen to family members and it scares us, though we will try anything once is our way of thinking also.
That is so terrible that you had to wait so long for your diagnosis and that you got so bad with it. I am guessing that untreated inflammatory arthritis could be similar to fibromyalgia/Cronic Fatigue Symptoms CFS ?
Some days Hubby has looked washed out, tired all the time and muscles weak, aching and loosing strength and felt he was getting old so quick, but since on the B12 and vitamin D3 and folic acid he has been far better, more energy and stamina.
Pleased to hear you are living life to the full (as you can get postie )
Me again, hope you don't think I'm nagging - there are some things you mention that I think I might be able to help with a little bit.
If you can find out the name of the pills your husband was given then there will be others here who have had the same & that may shed light on his rheumy's thinking. Because of the time limit, they may have been steroids .... 'Prednisone' by any chance?
You ask about inflammatory arthritis. Inflammatory arthritis is really a different beast to osteoarthritis. And the trouble is it can be difficult to tell the difference between them at first. I was thought to have osteoarthritis when I presented with swollen & painful joints. And it wasn't until I got really ill that inflammatory arthritis was considered. By that time I had some irreversible joint damage. (You can see why I'm so interested in your hubby getting a clearer diagnosis!)
Inflammatory arthritis - that includes RA, Psoriatic Arthritis and other forms too - is an autoimmune disease that affects the whole body - the arthritis bit is just one symptom really. Serious fatigue is a common symptom. As for getting a diagnosis - that can be really hard because sometimes people have antibodies in their blood that indicate RA but sometimes they don't. Sometimes people have raised inflammatory markers, but sometimes they don't. Very often diagnosis comes down to symptoms. That's why it can take a while - many doctors will be looking at what happens over time.
Great to hear that your hubby is feeling better. Perhaps he was just very run down. If, though, the tablets he was given were steroids then he might well feel better overall by now. Anyway, I've gone on enough. Having said that googling can be dangerous (yes, we all do it!) why not look up Osteoarthritis, Rheumatoid Arthritis and Psoriatic Arthritis and take your time getting an angle on the main differences. (There are some scary sites though that don't paint an accurate picture - Wikipedia always shows a pair of very deformed tootsies under Psoriatic Arthritis whereas thanks to the current drug therapies that's now a rare occurrence.)
Hope hubby gets better and better but if not, please consider asking to see a rheumy, maybe another rheumy because they do vary in how good they are. Good luck to you both!
If nagging gets Hubby better, carry on postle, I certainly don't mind.
Searched for the name of his pills, but to no avail.
We came away from Rheumy's room without no forward idea as what to do next, rheumy never even mentioned for Hubby to go back to our Doctor about all his other symptoms, all he suggested was for Hubby to give up his line of work, but he is coping far better now, so good job he didn't jack it in.
We thought best to go back to Doc again (felt like going round in circles,) Doc passed hubby onto rheumy 'cos he had more complicated symptoms than doc could deal with.
When we went back to Doc, Doc was far better than the rheumy, checked him over again more thorough, asked more thorough questions, then put him on the pills and booked him in for hand clinic, doc did so much more.
Don't think he was run down as too many muscle aches pains, sighs, tiredness even after a nights sleep, he and I know his wrists and ankles have got thinner, but that has not rang alarm bells yet.?
We will do as Doc says and keep going back as you suggested.
Both creatin kinase and Bilirubin bloods were flagged up as 'abnormal', but R was not concerned, we were concerned as abnormal Bilirubin connects back to B12 deficency.
Will 'google what you mentioned - O., RA. and PA .
Have already seen those pair of tootsies on the PA site and admit I was really very concerned for you cos they didn't look good.
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