My story any1 similar

[XlostX]

Hi every1, new to all this. I was finally diagnoised 4days ago with fibromalgia, had fought doctors for years who made me feel like it was all in my head. My vitamin d is 15 and hasnt moved up for over 2years. Today is a bad day whole body aches knees are killing me and neck/shoulders feel like they on fire and to top it of got.start of migraine wana sleep but cant get comfy. Any tips greatly appreciated. Do any of u find if u have really bad argument with partner u then suffer for days with really bad achy and fatigue. Thanks guys x

[Pjik]

Hi yes I relate to everything u said it is very frustrating sorry to hear u have fibro take care

[XlostX in reply to Pjik]

Hi thank u for replying, well hopefully working together we can all help each other so thank full found this site

[Pjik in reply to XlostX]

Yes me too

[Dinkie]

Hi and welcome to the club none of us particularly wants to be in. Firstly regarding vit D what level supplement are you on. My levels only came up with 20,000iu every other day. Low vit D can increase muscle fatigue so it is important to try and get them up. Epsom salt baths also help with muscle fatigue and cramps. Fibro is different for all of us so it's unfortunately a case of trial and error to find out what works for you.

Personally, prescription meds are out due to the side effects. I rely on a non processed food diet, no refined sugars and supplements. Heat pads, biofreeze, tens machine, gentle exercise (if only a stroll down the garden!), tai chi, swimming are also recommended and the input from my chiropractor and hypnotherapist all play their part in keeping me reasonably well and able to hold down my job. Learning the art of pacing also is vital. This is still a work in progress for me as I tend to overdo things when I am having a better day. Positive mental attitude is also important (easier said than done I know).

We are fairly quiet here on the weekends but generally it is a positive, helpful, supportive and happy group. No question to silly to ask, we have all either asked it, thought it, or answered it for someone. Once again welcome and I hope more members will be along to offer their thoughts.

[XlostX in reply to Dinkie]

Thank you for replying really appreciate it :-). Ive tried a few over the years i was on Colecalciferol 20,000unit capsules 3x a week and d didnt go up it actually went down by 2 points and then last 6months ive been takin Stexerol-D3 25,000unit tablets again 3x a week and again hasnt helped at all. The consultant i saw on tuesday has ordered a 1 25 dihydroxyvitamin D level test. Dont think it has helped that has taken years to get this diagnoised hospital believe ive had since i was 14 so 14years. I do find hot baths helps and ive been referred to a pain management clinic so hoping thay well help and ill will leave comments on here to advise given as what may not work for me may help others. Havin very mixed emotions its frightening but also a breathe of fresh air to be told what it is. X

[Dinkie in reply to XlostX]

Took from 1987 to a couple of years ago for me to be diagnosed. A very long road for me. Pain management classes work for some so you may find it helpful. You must give yourself time to adjust to the diagnosis. Mine was given by writing the word fibro on a piece of paper, the consultant handed to me and said "go research it I haven't time to explain it to you" I sat in the hospital car park and cried. Never heard of it, didn't know what it meant. Just remember you are the same person you were in the hour before as the hour after diagnosis, just you now have a label. You will be up and down so be kind to yourself it does take a while for everything to sink in and begin to find out what will work and help you.

[XlostX in reply to Dinkie]

Omg so sorry u were treated like that, thats awful must of been so frightening, i feel very lucky now coz the consultant i saw was so kind he explained alot to me and sent me away with a copy of a clinical study review. And he seems very insterested in researching fibro according to him they is a trial starting at brighton hospital to do with injecting a horrible vaccanation and seeing how the brain responds to it. I was lucky in within 3days he send a copy of the letter he send to me gp with everythin said and explained in my appointment which was very usefull as when got ta my car my mind went blank. Anythin i can do to help u please let me know x

[Dinkie in reply to XlostX]

ahh is the BCG vaccination. Had it twice and it didn't make one iota of difference to me. I understand there are several different vaccines so perhaps I didn't have the right one!

[XlostX in reply to Dinkie]

I'm not sure, he just mentioned about a trial at Brighton hospital , not sure if it's trail of treatment or trial to find out more about fibromyalgia I took as he meant a trail in finding out how people with fibro brains reacts to certain things as he used the worst we inject a horrible vaccine and see how the brain responds. He has told me no to taking medications and to try therapies. I've been told they don't really understand fibro or for sure why it happens he seems to believe 50% is genetic and 50% is environmental to reason why we get it. He seems very interested in researchin fibro to find answers and maybe one day a cure for us, as he updates me I'll update on here with information given. X

[Dinkie in reply to XlostX]

I don't take any prescription meds. I just rely on my own regime. It seems to work for me relatively well in that I can still hold down a job and have a reasonable life

[Hidden]

Stress makes it worse.

[XlostX in reply to Hidden]

Its horrible isnt it. Coz life is full of stresses really hard to aviod it sometimes need a nice long relaxing hoilday would be lovely lol x

[M0AL61 Moderator Volunteer]

Hi and welcome to our lovely forum.

Yes, I find stress of any kind definitely makes me worse.

For me, I find heat helps - electric blanket in bed, water bottle, head pads etc. I also find a gentle aromatherapy massage, a hot stone massage and reflexology help too. xx

[XlostX in reply to M0AL61]

Thank u. I shall give them a go. X

[Oscarlola]

Hi sorry yes I can relate to you it's hard but we are all here to help each other xx

[XlostX in reply to Oscarlola]

Thank u and so glad i found this. People around me at home dont understand coz they cant see it. I actually had to force my parnter to read hospital letter coz he doesnt believe amd just takes the mick if im havin a bad day with pain etc x

[Oscarlola in reply to XlostX]

Yes we are all with you there i had to do the same with my husband but yes it's a great group and I no whenever I'm struggling which is quite often I all ways turn to this group then I feel better welcome again xx

[Hidden]

Hi i agree with everything everyone has said. Reducing stress is key. Here's a few more tips to try:

- I bought a soft mattress topper which helps with pressure points and sleep (best to do this before the government takes all your money and drives you on to the streets!, oops, sorry)

- I take a pain killer before bed and have another one ready for if i wake up after 4hours.

- Remove all stressy, argumentative or narcissistic people from your life. (i'm now single but have lovely , calm , caring , easy going friends and i love em to death!!).

- I was also taught the credit system of energy use which works for me and goes as follows:

You get 10 credits of energy per day. (You have to work out how much 1 credit is for you)

If you use 1-9 credits in a day (i.e. move slowly and pace yourself) then you will get 10 new credits the next day.

if you use all 10 credits in a day ( i.e. act normally, which we all do occasionally) then you will get 0 the next day.

If you use 20 credits (i.e. im going to a party next weekend) Then you'll get nothing for 3-4 days after.... i'm still going to go though!!!

- This one is a bit heavy but it works for me because i find this situation difficult . My counciller told me that it's possible to distract your brain from registering stressful situations. so when dealing with stressful phone calls from home, like callcentres or Drs receptionists, I stand on a balancing board. Theory is that your brain is focused on balancing and not the phone call. Bizarre but does work.

Hope this also helps. Let me know if you get any good tips for brain fog.

good luck.

[XlostX in reply to Hidden]

Thank you. Im gunna give that go x

[Oscarlola in reply to Hidden]

What a good idea I think I'm going to give it a go I don't no about the balancing board 😁

[carmenp1]

Yes. my fibromyalgia gets worse with any kind of stress. I posted a few days ago that my GP gave me vitamin b12 injection which took away the severe pain I was in. It lasted 12 days this time. Usually lasts 3 days. My levels are normal so that's not why he prescribed it. I have to wait 6 weeks for next shot. 2 x 50mg tramadol works when pain is mild then no help at all. My GP put me on palexia 50mg SR once a day which helped ease the severe pain I was in today. It wore off by the evening and I took another as the pain is unbearable. It eased the pain. My Fibromyalgia pain hasn't responded to panadein forte. It's an awful pain to deal with and it took years before my GP sent to a rheumatologist. Not all doctors are great at diagnosis. I diagnosed myself for chronic fatigue which I feel is just a by product of fibromyalgia. I know how you feel. Des stress me out because I don't know if he believes how bad this gets.

[XlostX in reply to carmenp1]

Thank u for ur reply, interesting on the medication side of things . Consultant said he wasnt goin to prescribe anythin as side effects are not good. May have a rethink x

[carmenp1 in reply to XlostX]

He doesn't have fibromyalgia lol. All medications have side affects, the problem is finding the one that works for you. But you can't go without anything to help with the severe pain for one not to mention the insomnia.

[Hamish142]

Hi xlostx I was diagnosed a couple of wks ago and like you my knees hips neck shoulders and arms are in agony. I was sent home from work as I was in so much pain trying to act normal. I literally broke down crying ,now on Friday I started taking gabapentin and also yesterday I bought a v shaped pillow which really helped me get some much needed sleep. I am also waiting to be referred to the pain management team.i haven't left the house since Monday but I'm hoping once the pain eases I'll be able to. What I've learned on here for others is to be kind to yourself. I hope you get some sort of relief from your pain. X

[XlostX in reply to Hamish142]

Hi thanku for ur reply . Goin out 2mor and buyin a v shape pillow need good night sleep can never get comfy and keep wakin up . Hopefull pain managment will help us and be of some use x

[MsAndyIvy]

Yes... additional stress like arguments does make my symptoms spike.

Tips... take it easy, eat well, avoid stress, listen to your body.

[XlostX in reply to MsAndyIvy]

Thank u x

[KnackeredKaty]

Hi XlostX, I completely get exactly how you feel. Has a doctor ever explained to you why your vitamin D level is so low and why it hasn't changed? I find that doctor's can easily dish out a diagnosis or assume a diagnosis but rarely tell us why!

[XlostX in reply to KnackeredKaty]

Hiya, nope they just keep changin supplement and this has only been since i changed doctor surgery because i was just being ignored and fobbed off at my doctors told it was all in my head. Gp i have now has been ok he tired everythin he could ran outta answers so referred me to hospital who said its fibro and took more blood and has promised to find out why vitamin d wont increase. X

[KnackeredKaty in reply to XlostX]

Have you had your thyroid checked?

[XlostX in reply to KnackeredKaty]

Yep been told it's all fine had so many things tested for other last few months everything come back negative , only thing showing on blood tests was very low vitamin d

[Furface]

Hello, all that you say is familiar to me. Drs diagnosis of Fybromyalgia is not the relief it should be as basically it is a dustbin diagnosis and they don't know how to help you apart from throw chemicals at you.

I too had this awful pain you describe and many symptoms, low Vit D of 17, low B12, low Ferritin etc but I also found out that I was hypothyroid and had been left for 15 years with no medication. I got 20 years of medical records and discovered that I had way under range potassium and many other things that were under or over range. Have you had a thyroid test (not just a TSH test) but also FT4, FT3? This is very basic but would be a start. It isn't enough for the Dr to say 'everything is normal' as they think in range is fine. This is far from the truth. Hypothyroidism is frequently one of the underlying causes of Fybromyalgia. It usually causes depleted vitamin levels too.

Getting my D levels up involved 10,000 D3 soft gels plus K2 (this directs calcium to bones and teeth and also Magnesium which keeps it there. Magnesium is deficient in the majority of people (magnesium RBC test would show this). It is great for pain and I also use Magnesium Oil as this is absorbed into the skin, then into the blood where it is carried to where it is needed.

I tried many different things for the pain including chemicals, various pillows, new bed, back supports, voltarol gel etc but none of it worked until I got the D levels up. Then things began to change for the better. Any help?

[XlostX in reply to Furface]

Thank u, gunna get booked in for blood test. And requested ones uve mentioned above x

[Furface in reply to XlostX]

Be ready to argue your case and make sure you get a printout for yourself as Drs are too fond of saying 'everything is fine' when it is not at all fine. Also ask for your B12, Ferritin, Folate and Vit D tests to be done at the same time. You are entitled to have them checked especially if they have not checked them ever!

[XlostX in reply to Furface]

I'm ready to argue been fighting with them for years to get where I am now , vit d been extremely low for years and kept bein told its normal this time of year bla bla bla, finally actually been apoligised too that this was not the case and they should of taken more seriously many years ago first went doc with this 10years ago, consultant sent a re good telling of letter to gp and consultant getting bloods ordered that should of been and actually going to try his hardest to find out why my vit d levels haven't gone up at all in 2 yrs x

[carmenp1 in reply to Furface]

I had my thyroid removed in 1993 and put on 100mg tyrosine but my body hasn't been the same since. I have lived under tremendous stress for many years

[Al10]

Um, no judgement here but, have you thought of not arguing? Reckon a barney is good for clearing your lungs but it's not good khama.

Neither is festering gonna help. Festering is great for getting that big knot in your tummy.

Probly, and I'm not an expert, you both should start talking more? Like properly about how it feels with the arguing and how it isn't healthy? And can you each have the time to say stuff without the other getting upset.

You each need to be able to say how you feel, without hurting the other. No blaming. You can then set to finding how to solve the issues that arise coz we all have some.

We each have stuff that might upset us but not someone else. (er could you wash your hands properly please?) Our quirks can be endearing or infuriating depending on your point of view. But in relationships we have to accomodate and understand.

And if you can't talk to your Honey, you know you got trouble hey?

With the pain, don't panic, pain passes. It may not disappear but it does recede it's intensity. (unless you panic!!!) Then you start looking for the things you can do to help. Find you migraine triggers. If it's chocolate or arguing? You know what you need to do. Maybe you have food issues that niggle at your head and your fibro? Do your reading and research. Be your own expert. Take control.

With fibro, it is easy to feel a victim. Too often our Drs dont understand and treat us like we are crazy. It's upsetting to be so misunderstood. At least we can take the time to treat ourselves right, understand ourselves and do our own research.

[XlostX in reply to Al10]

Thank u and u speak alot of sense x

[Midori]

Oh yes! a fight with your Significant Other can make you feel awful even when you're able bodied, it just multiplies when you have Fibro!

Don't forget, your OH will also have to come to terms with your diagnosis as well,so it can be a difficult time for them too.

[Jennyw59]

Hi and sorry you've been diagnosed with this awful disease. It's not life threatening at least but it is life limiting 😣 I couldnt get comfortable at all the other day and had a hot hot hot bath with radox muscle sooth and epsom salts and that seemed to ease my whole body! Defo going to have more of those! I just take myself of to my memory foam topped bed and prop myself with lots of pillows take my codeine and listen to the radio until a bit more comfy. Sitting in a chair is uncomfortable. Hope you find more tips on here to help you! X big hugs

[Chrisbel]

You could try taking your vit D3 along with vit k2 and magnesium Bis Glycinate an hour befor bed, I find that these taken together help me sleep.

[XlostX]

So sorry to hear that, hear for u if u need anythin x

[SewingPoodle]

Hi. I have just been diagnosed today having been complaining about widespread pain and chronic fatigue since I was 17. I am 50. I don’t know if I am relieved to have a diagnosis or terrified of the prospect. I have been on steroids for the last 10 years for a different AI (I don’t even know if this is an AI) and have just been weened off to have a massive pain flare. The new rheumatologist says it should have been diagnosed years ago there are notes in my file questioning if I had it but no one told me or treated it. My liver function test is through the roof (this has happened before) but he won’t think about meds until under control) vet D very very low and ESR through the roof

I thank all of you for the tips because it gives me some hope as to what to try - hot baths I love but Epsom salts sound like a frat idea as does a mattress topper and a v shaped pillow. Any other advice greatly appreciated.