Anyone here got fibromyalgia/arthritis type pains

[saltire]

Morning. I suffer from very painful muscles,ligamnets and joints. The pain isn't there all teh time however. I have recently noticed that i am getting cold hands and feet during a flare up, and feelings of pins and needles. Also have a few bowel problems (I know TMI!).
I wondered if anyone with fibromyalgia or arthritis type illness had similar symptoms, and if it's common. I don't know if these symptoms are connected to my pains

Bump

can't help much ... but I have the same sort of thing ... I put it down to relaxin still in the body in higher amounts while bfing so joints looser and means you can over-do it ...

am actually thinking of getting it checked out medically tho cos sometimes it really is very painful and I dread getting up after being in same position for a length of time

and I'm actually a pretty fit and healthy woman with high pain tolerance ... so not imagining/exagerrating

sympathise ...

LULAMAMA help ... Lula-the-faqb-online-Doula might have some words of wisdom on this if it is a preg/postbirth commonality ...

Are you there???????

I will post more later saltire, but I went through a phase where I thought I had fibromyalgia (there are a few threads about it in the archives)

I have to go and feed the kids but I'll try and come back later and post.

My sister does, she has HMS (poss fibro) and IBS. She is worse in winter and pretty sure she gets cold extremities too.

I'm not pregnanat!. However i did these symptoms when i was, although much milder.

Fox, thanks, I will check the threads. I am convinced i have Fibromyalgia, but the rheumatologist won't accept this. She is basing her diagnosis on
A) I don't get the sore pressure areas that sufferers do. However, when i have a pain flare up i get sore on the pressure areas.
B) I'm not in pain every day.

Thje flare ups can last a day a week or even longer, and i also have the other symptoms i mentioned in my OP.

Indith, has your sister had a diagnosis on fibromyalgia yet?

saltire - i too was convinced i had fibromyalgia. i had exactly the same symptoms as you. the bizarre thing is, since i have been on AD's, the pains have almost gone and i don't get the cold hands or pins and needles. i was convinced i had arthritis or something.

i have just had a blood test result come back saying i have Coeliacs disease, and some of the symptoms are connected to this condition (not saying u have this though). these are my symptoms other than those mentioned above.
bloating
constipation
wind
depression
anxiety
panic attacks

i would go back to your GP and get some blood tests done. it could be one of many things.

K and K's mom. I take a very mild dose of AD's (10mg) every night to help with pain relief and sleeping. My own GP said that the fact that i wasn't getting decent sleep because of pain wasn't helping how i felt overall.
I do get bloating and constipation - but it also goes the other way as well, sometimes i can go to the loo 3 or 4 times a day, other days i don't go at all.
I have had loads of blood tests done. What is worrying me now is that the pain flare ups are getting more frequent and the pain is getting more debilitating. I work as a Childminder and this has kept me going, i have been determined not to give in to the pain.

saltire - although i suffer mainly with constipation, it too can go the other way with frequent trips to the loo.

ibs can cause all of the sympoms you mentioned, so can crohns diseas or ulcerative colitis. what exactly has your GP tested? what bloods have you had?

She doesn't have a fibro diagnosis, just the hypermobility syndrom but has many symptoms linked to fibro such as pressure points and resistance to painkillers. It can be so hard to get a diagnosis as so many conditions seem to be linked together (eg IBS). I think some of the pain even eased up after being operated on for endometriosis. It is worth keeping going and maybe seeing another doctor (sister saw several just to get as far as HMS diagnosis, one ven told her aged 20 that it was normal she had days when she couldn't climb the stairs)as chronic pain is so hard to live with and very much overlooked by doctors. Did the rheumatologist look for HMS?

I am not sure what bloods have been taken, my GP said "we will take every blood test there is availiable", so not sure what tests have or haven't been done

hi saltire!

I went through a period with the same sort of symptoms but with crippling migraines and bad headaches thrown in. I also got very painful lumps on my joints (that you could feel and see - very odd!).

Doctors were completely useless - told me the headaches couldn't have been migraines because migraine pills didn't work and then accused me of taking too many painkillers and then told me, I must be depressed! Illnesses that were considered - Lupus (and other related auto immune illnesses), fibromyalgia, arthritis, coeliac disease (you may want to get these ruled out).

Anyway, to cut a long story short, it seems that I have some sort of problem with my body's reaction to hormones. There's nothing wrong with my hormone level - the only anomalies in my blood are anaemia and a lower than normal white blood count - however, it seemed that my symptoms were quite often cyclical (based around my menstrual cycle). My menstrual cycle has been stopped and lo and behold, all my symptoms have either disappeared or lessened to the extent that they are hardly noticeable.

The gynae hasn't ruled out the possibility that I have an underlying condition that may have just been worsened by my cycle but at the moment, the thought is that most of my symptoms were being caused by a very severe form of PMT then getting a very heavy period was knocking my body for six and making all the health symptoms last longer.

I also can't emphasise enough how important diet is in all of this. I was advised to make sure I was eating a lot of carbohydrates and to have regular snacks to avoid my blood sugar from dipping too much as this also seemed to trigger problems. The IBS symptoms are a pain (and luckily, I don't suffer too badly in this department) but I have noticed there are certain foods that trigger those symptoms (spicy foods and beer for example) so I try not to have those too often.

I don't know what else to suggest but I'm so glad the doctors are listening to you. Mine didn't at all and I had to self refer myself to a consultant before I got listened to. Let us know what they say and how you get on.

Satire - my mum has fybromyalgia, diagnosed about ten years ago, doctors dismissed her symptoms for years! Basically she had been in pain from her early twenties, but not all the time to start with and not the pressure points to start with either, over the years the pain gradually got worse and onyl in her late 40s was she diagnosed, so thae fact that your pains are not constant and you don't have the pressure point pains doesn't necessarily rule out fybro. Now she is in pain all the time and it is worse at night, meaning she doesn't sleep well, the lack of sleep then makes the pain worse so it is a downward spiral really. The other problem of course with fybromyalgia is that even if it is diagnosed there is absolutely nothing that can be done about it, all the doctors keep telling my mum is to do regular exercise as it alleviates the pain apparantly, and take painkillers. IBS is a symptom that fybromyalgia sufferers get too, so it is possible you have it. It is also hereditary, does or did anyone else in your family have your type of symptoms? My sisters and I get pressure pains sometimes and pins and needles etc.

Don't know if this is of any help? When do you get the results of all the blood tests? Good luck, I hope the docotrs find the cause of your chronic pain.

I read some of your previous threads, fox, thanks. I had all the blood tests taken about 2 years ago, before the referral to a rheumatologist. This is my second rheumatologist, the first one, at Ninewells in Dundee was very dismissive, said i had a neck problem and referred me to a physio. The physio had a good look and said there was nothing wrong with my neck, and even if there was, he doubted that it would cause the type of pain i was suffering from. They did pick up on abnormally high levels of something called Creatin (sp?) in my bloods, but neither rheumatologist has made any comment about this.
Rosie, your mum sounds a bit like me. mine firs tstrated when i was about 22, and was dismissed as a virus, as it went away pretty quickly. However over the years the pain has got worse, much more intense. The pain flare ups happen more frequently and for longer now, and i am finding them quite debilitating at times. When my feet are sore, my feet seem to drag.

I've had ME/fibromyalgia (they often occur at the same time). I had three years with similar symptoms to the ones fox describes ie pain all over, swollen joints, migraines - I can honestly say that I had a long, continuous left-sided headache for well over a year. NOTHING woul;d take it away when the illness was at its worst. I used to smash my head against the wall to try and get the pressure to ease off (I know how stupid that is!). I also had panic attacks, hallucinations, paranoia and general physical/emotional breakdown thrown in. It has been a rather long road back to normality, but I now only have the most residual muscle pains/tension, am being treated fairly effectively for the anxiety and only rarely get those crippling migraines.

To anyone with fibromyalgia I would recommend making the diet very simple, fresh easily digestible foods and plenty of water. Brown rice also has something in it which helps replenish the myelin sheaths, so reduces the pain generally. Also deep relaxation techniques helped me. And don't fight it by trying to do too much - do little bits of fairly light exercise, and listen to your body's need to rest.

Oh, and I have IBS and most of the people I have met who have had ME/fibromyalgia have also had digestive problems, headaches and anxiety. They seem to be linked.

What a time of it you had Greeny. I often have headaches, at the base of my neck, but it never occured to me that they could be realted to the other pains i get, because i tend to get them in the morning.
I find it very difficult to do exercise in a pain flare up, like i said in my previous post, even walking acn sometimes be a problem, anmd i use the mindees pram as a support. However, when I am not in a pain flare (which is less often theses days) I can mange a bit of exercise.
I think people often think there is nothing wrong with me because there isn't really any physical symptoms, although i am now walking oddly and wearing wrist splints.I also worry about the painkillers i take, they don't seem to help much. I have co-codamol 30/500mg for nightitmes, but when i don't have pain I obviously don't take them, however on those nights i have really unsettled nights. I also feel they are doing nothing for the pain at all

I think, if it is fibromyalgia, then it's like a vicious circle. Think there's some proof (remember looking this up at the time!) that light, daily exercise can really help - problem is that, if you are in such pain, doing exercise can be virtually impossible. Also, I found too much exercise used to make me much worse.

I agree with Greeny though - whatever it is - learning to do deep relaxation, a good diet, trying to do light exercise where possible - can only help you.

(ps greeny, I used to do the pain-so-bad-you-bash-your-head-against-the-wall thing).

Sorry to hear about your useless rheumatologist.

Do you know Tribpot? Her husband has fibromyalgia (they think) and she was a massive help to me.

sorry, was meant to sound sympathetic to you and greeny but not sure that came across in my post! xx

Fox, I noticed on your own threads about Fibromyalgia that Tribpot had given you a lot of advice. I don't if she's still around though, I don't recall seeing her name recently, unless of course she has changed it

saltire, I haven't found co-codamol effective during a bad flare-up either. It's a bit like trying to bail out the Titanic with a thimble, isn't it? I lost count of the number of doctors who smiled patronisingly and gave me co-codamol. One charming ex-Harley street GP in Oxford told me "what you need, young lady, is a BABY" .

Have you tried Syndol instead of co-codamol for the tension headaches at the base of your skull? It has a mild muscle relaxant in it and in combination with deep breathing it can really help.

Sorry you're going through this saltire, it is so horrible.

Greenselves

Sorry to hijack the thread but can you get Syndol over the counter.
I have been prescribed Co-Codamol for neck pain and it doesn't relieve it for long.

tribpot's around I think but doesn't get a lot of time to post (think she has her hands quite full!)

you can get syndol over the counter

Yes, you can get Syndol over the counter.

Also beware of taking ibuprofen regularly because it can cause depression - I was told to take it long-term by one GP and it really isn't good.

Thanks fox and greeny. I shall maybe start a thread with her name, in case she is around.

I had a bad flare up last week, which was still going on on Friday night. I woke up yesterday and it was gone, so managed to enjoy my day in Edinburgh for the rugby. My legs, feet and arms are really sore again today, so bad in fact I am taking soem painkillers and a couple of hot water bottles and going off to bed, I just feel awful and I'm sure it's the pain.
I have tried syndol before Greeny, I sometimes have some in because i get terrible headaches at the base of my head, where it joins the neck. I'm sure now they are realted to this other pain I get, but again I don't get them all the time.

I thought I'd bump this up to see if tribpot's around at all.