Not sure if fibromyalgia or not?

All your fibromyalgia experiences, questions and answers.

Moderators: perseus, *Lisa*, FluppyPuffy

Not sure if fibromyalgia or not?

Postby Zia2014 » Sun Jun 29, 2014 3:45 pm

Hi all,

I stumbled across this forum and would appreciate any thoughts from you all.

I have been ill with various symptoms since January this year, and I am now off work. I've listed my symptoms below (sorry it's a bit long!) along with a bit of background about myself, please if anyone has any ideas or suggestions I would be very grateful, as I am feeling very overwhelmed and upset right now!

Background - I'm 35, female, pretty lazy (!) but due to knee/back problems I did barely any exercise before bar swimming. I have a desk-based job.

Blood tests showed severe Vit D deficiency of 15, was put on 12k for one month, now on maintenance dose of 800. Level now at 144 so none of my symptoms due to that. Had no stress/depression/anxiety when this started, and no other illness.Been tested for menopause, anaemia, thyroid, allergy etc - nothing wrong.
Background of other medical issues:
• Had IBS since 22.
• Pulled upper back in November.
• Knee problems for 4 years.

1) Started these symptoms in late January:
• Hot Flushes: even at 6C. Mainly head/upper body. Both night and day. Face doesn't feel hot to my partner. No sweating.
• Exhaustion: even with full night’s sleep. At start was yawning all day. Flag by pm. Now feels more like physical exhaustion, less yawning.
• Irritability: snappy, hard to keep calm.
• Dizziness: occasional but very strong, woozy.
• Nausea: almost constant at times, been sick twice. This has passed in the main.
• Concentration, mental ability, clumsiness, forgetfulness: getting worse.
• Dry/chapped/sore/split lips: bleeding, rash. Nearly went but came back, seems on a cycle. Fungal cream didn't help.
• Blurred vision: Dr D gave medicated chloramphenicol drops for conjunctivitis early Apr, did clear now re-started. Saw optician but nothing unusual.
• Rash on eyelids/under eye: v. itchy, scaly, lids look droopy/folded/dark. Dr diagnosed blapahritis early Apr. This comes and goes like mouth issues. Dr said last 3 issues un-related to rest of issues.

2) - These started later:
• IBS/stomach aches: had IBS symptoms badly following food poisoning, everything irritated stomach. Since then also regular stomach aches, seemingly for no reason.
• Muscle aches/joint pain: both back and knees seem worse at the moment, despite getting automatic car to help latter. Also feel generally achy a lot.
• Stress/depression: getting a lot worse. From 2-8 May had flu/bug, returned to work 9 May and since have felt very stressed, had the shakes, depression getting worse and had a panic attack on Wed 14 May.
• Shaking: find myself shaking, not due to coldness, it passes.
• Sore throat. Picked up at Easter, throat continued to be bad, very dry and drinking lots to compensate (and help dry mouth).
• Poor immune system: I seem to have picked up a cold, cough, flu/bug and food poisoning since this all started. Normally my immune system is very good and I fight off most things.
• Insomnia: patchy normally, but getting worse. Often hot flushes, when shattered can’t sleep. This has mainly passed since taking Amitriplyine.
• Headaches: been plagued with these in last few weeks, very strong.
• Difficulty drinking alcohol. Had food poisoning just before Easter and over the weekend, found drinking alcohol hard (to swallow). Took couple of weeks to be able to drink it again. Not taking now I am on Amitriplyine and codeine.

3) - last 4 weeks
• Severe pains all over body, including knees, lower back, upper back, shoulders/neck, legs, ankles, arms. This moves and makes driving and walking difficult, hence I am off work. I've been given Amitriplyine but sleeping still a real problem and pain doesn't feel any better.

Any ideas, suggestions etc would be very welcome!! I am desperate to get back to work but have a 30 minute drive and atm that's not possible due to the pain.

My GP has referred me to an endocrin who has decided I have sleep apnea (but I rarely snore and don't gasp or stop breathing!) seemingly based on my tiredness. I saw endo 2 months ago, he has referred me to Respiratory and I have a follow up with endo late July. To tell the truth I think the Respiratory is a waste of time, the Endo hasn't found anything in the blood tests, and I really think I need referral to the pain clinic/rheumatology, but that is going to take ages as my GP won't do it until I've been discharged!

Hopefully someone out there can help, and well done if you've made it to the end of this essay!

Gem
Zia2014
UKFM Regular
 
Posts: 1033
Joined: Sun Jun 29, 2014 2:55 pm

Re: Not sure if fibromyalgia or not?

Postby denys » Sun Jun 29, 2014 3:56 pm

Hi Gem I have already spoken about things in your intro post, you do seem to have been through the mill, just a little :yikes: :yikes: :yikes: :yikes: as I have already said we arent qualified to say whether or not it is or isnt FM and your symptoms while some of them could possibly be FM related they could also be caused by some other condition.

FM symptoms overlap so many different conditions that it really is a diagnosis of elimination, so I thing your doc is being very thorough in wanting you to have all the other tests before a referral to a rhuematologist , unfortunately it can take years to get a diagnosis but some people are being diagnosed a lot earlier in some areas.

I truly hope they discover something they can treat and get you better, but if not then you have found a safe haven here with us where we will offer you as much support and understanding as you need :-D :-D :-D
Denys

As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
User avatar
denys
UKFM Veteran
 
Posts: 11901
Joined: Tue Feb 09, 2010 10:05 pm

Re: Not sure if fibromyalgia or not?

Postby Zia2014 » Sun Jun 29, 2014 4:03 pm

Ah hello again! Didn't realise you had replied here too :)

Wow, years?! Suddenly my 6 months doesn't seem that long :cry:

Thanks for the welcome!

Gem
Zia2014
UKFM Regular
 
Posts: 1033
Joined: Sun Jun 29, 2014 2:55 pm

Re: Not sure if fibromyalgia or not?

Postby denys » Sun Jun 29, 2014 4:06 pm

Well hopefully you will have some news before too long :fingerscrossed: :fingerscrossed: :fingerscrossed: Keep your chin up and dont let it grind you down (hard I know) constant pain loves to feed off negative emotions, stress and all leads to a worsening of depression (no wonder really) but if you are feeling low then come on here and we'll do our best to cheer you up :-D :-D :-D :-D
Denys

As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
User avatar
denys
UKFM Veteran
 
Posts: 11901
Joined: Tue Feb 09, 2010 10:05 pm

Re: Not sure if fibromyalgia or not?

Postby Zia2014 » Sun Jun 29, 2014 4:47 pm

Thanks (again!). It's true it has been getting me down a lot.
Zia2014
UKFM Regular
 
Posts: 1033
Joined: Sun Jun 29, 2014 2:55 pm

Re: Not sure if fibromyalgia or not?

Postby alipali » Sun Jun 29, 2014 5:09 pm

You sound quite poorly either way, have you suggested fibro to your doc? I had to before he would send me to a neurologist to confirm. You may well benefit from taking Low dose naltrexone. I've found it helps most symptoms.
alipali
UKFM Newbie
 
Posts: 3
Joined: Wed May 28, 2014 2:42 pm

Re: Not sure if fibromyalgia or not?

Postby Zia2014 » Sun Jun 29, 2014 5:18 pm

Hi Alipali,

One gp suggested it to me but said they needed to rule out other things, and then I mentioned it to my 'main' one as well who said the same basically. The endo specialist just said it wouldn't be him that diagnosed it and that was that!

I'm already on amitriptyline at 75mg, to help me sleep. The gp seems more concerned about that than the pain.

Gem
Zia2014
UKFM Regular
 
Posts: 1033
Joined: Sun Jun 29, 2014 2:55 pm

Re: Not sure if fibromyalgia or not?

Postby Minniemum » Sun Jun 29, 2014 6:44 pm

Hi,

Sorry to hear what a difficult time you're having. After going back and fro to GP over a period of years will lots of vague pain symptoms, frequent infections etc, following yet another fall, I asked to see Physio due to pain in my hip. He diagnosed Fibro within a short time based on tender spots. He was using direct pressure to try to turn off the pain. This was executing at the time but the pain did ease, but when it came back it was so magnified, it was hard to take.
When I saw him again and told him, he then checked the usual pressure points, he then told me to go back to GP and let them know his diagnosis. I then had a few blood tests that were negative so was given an information sheet and Amitriptyline prescription.
I hope you don't have Fibro, but if you do, like the rest of us, you find a way to live and cope that suits you best.
Minniemum
UKFM Member
 
Posts: 14
Joined: Wed Feb 12, 2014 10:33 am

Re: Not sure if fibromyalgia or not?

Postby iblinkin » Sun Jun 29, 2014 8:33 pm

Hi Zia, sorry that you are going thru this horrible mess and i hope you find some answers. I posted a site that you may want to look at as it is very imformative and they do comparisons of other illnesses that may mimic fibro and helps to rule out other ailments such as Lupus and so on. I'm posting it here for you to check out and hopefully get some answers. Cheers and i hope you feel better soon.
http://www.healthcentral.com/chronic-pain/
iblinkin
UKFM Member
 
Posts: 140
Joined: Tue Jun 24, 2014 11:37 pm

Re: Not sure if fibromyalgia or not?

Postby migrembe » Sun Jun 29, 2014 10:51 pm

Sorry we cannot diagnose you.

You could try the pain point test for Fibromyalgia and see what you think, but you will have to wait for the Dr to diagnose whatever it may be.

For myself i had 7 years of hell and it was only after a fall down stairs that i have never recovered from pain-wise they finally diagnosed FMS.

You don't say what medications you are on, even over the counter pills for pain can have a negative affect on you and so can many so called health pills and they can also work against each other.

As for work, although it's hard to keep going try not to give up and try and do some gentle exercise to keep yourself going. As many of us have learnt it's is when we sit or lay down for long periods of time that it becomes harder to get going again.

As for vitamin D, most Brits are deficient in it during the winter months there is little or no sun and in the summer we are either inside working or we cover ourselves with sun block, neither of which is useful as the body uses sunlight to make vitamin D in the first place.

Bevrerley
migrembe
UKFM Member
 
Posts: 429
Joined: Fri Feb 24, 2012 8:23 am

Re: Not sure if fibromyalgia or not?

Postby The Fizz » Mon Jun 30, 2014 1:09 am

Just as others have said, we cannot diagnose you, but we can make suggestions you may like to investigate.

Whilst a lot of your symptoms point towards Fibro, they also sound like Coeliac disease (I have both). Obviously, your symptoms could be a combination of both conditions. Have you had blood tests for Coeliac disease? Even if you have and they come back negative, it doesn't necessarily mean you don't have it, as a lot of people get 'false negatives'. The only way you can find out for sure is by having an endoscopy, where they would take biopsies to tell if the gut has been damaged by eating gluten and wheat.

Also bear in mind that everyone's symptoms are different (in both fibro and coeliacs). A lot of
people who have been diagnosed with IBS are actually misdiagnosed and later go on to find they have coeliac disease. Even the symptoms you describe relating to dizziness can be associated with coeliacs as there is a form of dyspraxia that can be caused by it.

A lot of the symptoms you described, are familiar to me and what I went through, so don't dismiss it without getting it investigated first.

Hope this helps.
Last edited by FluppyPuffy on Mon Jun 30, 2014 10:58 am, edited 1 time in total.
Reason: Made paragraphs clearer for easier reading.
"The Impossible Just takes a Little Longer" - Art Berg
The Fizz
UKFM Member
 
Posts: 15
Joined: Sun Jun 30, 2013 6:01 pm
Location: North East

Re: Not sure if fibromyalgia or not?

Postby FluppyPuffy » Mon Jun 30, 2014 11:07 am

As you've seen from some of the replies, there are a number of possibilities that could be the reason behind what you are experiencing Gem, which is why your GP is wanting to check for additional problems before going down the FM route. Doing this would suggest your GP is being very thorough before committing to a dx and/or additional referrals as it tends to be a process of elimination for FM to be dx'd as it doesn't show up in any tests, scans etc that are used by the NHS.

Altho you feel the Respiratory referral may not be of any use, it could well be worth attending anyway. Sometimes a fresh approach from someone new/different can lead to some alternative options opening up that could help with you getting the answers you're looking for.
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

If your dog doesn't like someone, then you probably shouldn't either
User avatar
FluppyPuffy
SITE ADMIN
 
Posts: 12719
Joined: Mon Jun 08, 2009 11:25 am
Location: Living Life On The Edge.......Of The Norty Step!!!

Re: Not sure if fibromyalgia or not?

Postby Zia2014 » Mon Jun 30, 2014 2:03 pm

Hi all and thanks for your replies.

Minniemum - it seems people have been diagnosed by different people, GP, neuro, rheumo...I don't really know what will happen to me as backup GP said he would diagnose it but my main GP said it would be by the rheumo! I really appreciate your reply. How much Amitripyline are you on? (I really can't spell that name!!)

iblinkin - I will take a look at that link, thank you. I did some googling and managed to totally scare myself, so a more targeted approach would be more sensible :roll:

migrembe - I haven't asked for a diagnosis, of course I know only a doctor could do that! I'm more after an idea of whether my symptoms *might* be similar to some of yours. In particular I was wondering about the heat thing, as I haven't seen much mention of that as being a symptom and it is driving me mad.

I also tried doing that point test but these days I can't be sure what is and isn't painful, it all seems to be.

I did say what meds I am on - Amitriyline 75mg (I also said in my reply earlier). I am not on any OTC meds at all, if I was I would have said. The only other med I take is the depo provera injection and I have been on that for over a decade.

Thanks for the tip about exercise, I am thinking about doing a pilates class tomorrow but don't know if it's a good idea, I haven't done it in years and wasn't very good in the first place! :lol:

Regarding the Vitamin D, I have a skin condition (allergy to the sun) so stay out of the sun all the time and cover up. So it's not really surprising I was so deficient in it.

The Fizz - Thanks. I have been tested for Coeliac disease, twice. It turned out to be IBS. I've had it for a long time and diet-wise nothing has changed. I manage it by being careful what I eat. Could the heat thing be linked to that?

FluppyPuffy - Thanks, I am definitely going to the respiratory appointment as I wouldn't make such a big assumption before a test was done. But the endo who referred me did a sleep survey on me and came out with a very different score to the one I did. Plus I just don't have the main symptoms....but yes I will go and see what happens.
Zia2014
UKFM Regular
 
Posts: 1033
Joined: Sun Jun 29, 2014 2:55 pm

Re: Not sure if fibromyalgia or not?

Postby Tally1068 » Mon Jun 30, 2014 6:50 pm

Sorry to hear you are in so much pain. It's so stressful when you don't know what it is.
I cant add anything to what people on here have already said, but just to cheer you up!! it took 31/2 years for a rheumatologist to diagnose fibromyalgia. They literally tested for every other thing during those years.
While I appreciate the thoroughness of ruling stuff out, there was a lot of tears in that time. I felt like a hypochondriac. The diagnosis was a relief, in a way. I'd never heard of FM so reading up on it was a it of a shock.
I suffer from other chronic ailments too so I already have been taking sleeping tablets for nearly 0 years now. I truly don't think they would prescribe them now, but they do help.
I'm also on 30mg of amitriptyline which has been a godsend in getting rid of the "concreteness" and painful cramps in my upper thigh area.
Best of luck. You're in the right place on here. I've learnt so much by reading all the posts.
Tally1068
UKFM Member
 
Posts: 86
Joined: Thu Jun 20, 2013 11:30 pm

Re: Not sure if fibromyalgia or not?

Postby Tally1068 » Mon Jun 30, 2014 6:53 pm

Sorry, the edit sign isn't showing up on my laptop. That should be 50 years on sleeping tablets.
Tally1068
UKFM Member
 
Posts: 86
Joined: Thu Jun 20, 2013 11:30 pm

Next

Return to Living with Fibromyalgia

Who is online

Users browsing this forum: No registered users and 11 guests