I don't want a Label! I want a Diagnosis

After 3 years of going backwards and forwards to the gp I finally found a doctor that understood.... The others put my symptoms down to depression as I've had some deaths in the family in close succession. 

Keep persevering with your drs you will find one that helps.

Your symptoms sound very similar to mine and my gp diagnosed straight away

It is so frustrating, isn't it?  I have had an 'official' fibromyalgia diagnosis from my GP, and I describle my pain exactly as you do - it's very much 'heaviness' combined with very weak joints. Unfortunately the whole area of fibromyalgia / ME / CFS / PVFS etc etc seems to be a very vague one still for most of the medical world, and I'm personally convinced that there are all sorts of different conditions that are labelled (as you rightly put it!) 'fibromylagia' because they share similar symptoms.  That said, fibromylagia (unlike the others in that list) CAN be officially diagnosed - you have to have a certain number of 'tender points' (I think possibly 11 out of 18?) and then they diagnose fibromyalgia.  If you haven't been told about these, then do google them!

I'm afraid it does all seem to be a bit of a grey area, in terms of managing the illness as well.  For example the literature tells us to keep exercising whatever happens as it will help things, but over ten years of living with this I have discovered that when my body needs to stop, it needs to stop, and continuing to exercise will seriously prolong recovery from a flare-up. You will work out what works for your body as you go along, and I do hope it happens soon for you.  Rheumatology is definitely the right place for a diagnosis - and will probably give you the best advice for managing it (though as I said, what works for you...) so definitely keep chasing up that referral.

Hi there, your symptoms sound very similar to mine and your description of the burning pain is a good way to describe it. Well done for standing firm, I have been like this 4 1/2 years and was diagnosed with Fibromyalgia only a fortnight ago, so still learning myself. A Reumatologist diagnosed me after years of being dismissed and seeing doctor after doctor,  normal test results etc and I completely understand your frustration. It can take a while but it sounds like you're getting somewhere now, the referral is good news. I hope you get the answers you need and the treatment for your symptoms. Best wishes.

I have had many issue's with the GP's but I do think (now) that they have had a word in their ear about the amount of referrals they have been making and the need to save NHS money.

I think you have probably been down the same road as most of us as it has taken me 12 months to get to see the pain clinic at Walton hospital to get a diagnosis. I am frustrated and angry because in my case they have done little else to find the root cause except telling me that the thing that set it all off should not be causing this amount of pain.

it has taken a further two months for a Dr to suggest a rheumatologist and I now await the chance to see this specialist.

There are people on here that will give you good sound advice on what to do or ask for so I do think your in the right place.

Best of luck

 

check out this website F/M is F/M thats it thats your diagnosis.

ukfibromyalgia.com, this is a very good site where you will get answers.

best wishes james

Thank you everybody for your comments, Much Appreciated.

I sure hope you get some answers soon! I feel your frustration because now my pain specialist wants to rule out my spinal stenosis in my neck and my fibromyalgia. This is been going on for over 4 years. As you and I both know every Dr has a different diagnosis and opinions. I hope you get some where. Keep us informed please. Prayers!

An emotional trauma pushed my body into FM in 1999 and I had been for years earlier working on what I believed was a sluggish thyroid and could not get fixed by the MD I was seeing....starting back in 1991....finally got it fixed in 2002, but the FM hit me a few yrs earlier....

Thinking about this, do kinda believe if my thyroid was in better shape the FM wouldn't have been so horrible....

TOO TOO MANY doctors don't get the thyroid right and there is such a huge connection.   stop the thyroid madness is a great book on the thyroid mess...

I deal with OA as well and all is worse since the trauma of a hip replacement in 2010......and I'm aging......J

I take tons of supps to keep my health up and grape seed extract is a salvation...

Hello MrsShipo,

Sorry to hear your story, although it is very familiar to most people on this site it seems. Why do Doctors do that? Ask us what we want to get out of our appt, referral etc! Luckily my Doctor seems interested in this condition, and doesn't just throw painkillers at me. From what I have read on here painkillers don't always work that well and have nasty side effects. So good luck with your diagnosis and keep looking for a more understanding Doc. Failing that, see if your Doc is open to gaining info from you -I have come across some people who do this!

Take care, Anne

Hi there.

    I am so with you on the way gps etc treat us. It feels like I'm just being given this pill, that pill. It took almost 4 years to finally be referred to a Rheumatologist who diagnosed Fibromyalgia. I suppose it helps finally knowing what is wrong but that's where it stops. I'm still in agony everyday, no sleep, depression, the list is endless. Twice I've been at my lowest ever when the pain has been so unbearable that I was so close to overdosing so I wouldn't feel anything anymore. I'm going back to see my gp next week and am going to be tough with her cause I've had just about enough. I hope you get the answers you need also Hun. X

Hi all,

         symptoms of F/M  

Pain - Fibromyalgia pain has no boundaries- Fatigue - This symptom can be one of the most incapacitating for people with fibromyalgia.-- Memory and Concentration - Difficulty concentrating and retaining new information-- Sleep Disorders - Patients report trouble falling asleep and more importantly staying asleep-- Exercise Difficulties - Moderate intensity exercise activates a powerful pain-relieving system in healthy people, but it makes the pain of fibromyalgia worse.-- Irritable Bowel Syndrome - Constipation, diarrhea, frequent abdominal pain and bloating-- Chronic Headaches - Recurrent migraine or tension headaches are experienced by 50 to 70 percent of fibromyalgia patients-- Jaw Pain - Temporomandibular joint dysfunction causes tremendous jaw-related face and head pain--

Other Common Symptoms - Non-cardiac chest pain, acid reflux, irregular heart beat or palpitations, shortness of breath, numbness and tingling sensations, the feeling of swollen extremities, chemical sensitivities, nasal congestion, premenstrual syndrome and painful periods, irritable bladder, interstitial cystitis, vulvodynia (vulvar pain), difficulty focusing eyes, dry or burning eyes and mouth, dizziness or feeling faint, profuse sweating, muscle weakness and balance issues can occur.24,25,26 Fibromyalgia patients are often sensitive to odors, loud noises, bright lights, some foods, and often the medications that they are prescribed.27.

Aggravating Factors - Changes in weather, cold or drafty environments, hormonal fluctuations (premenstrual and menopausal states), stress, depression, anxiety, and over-exertion can all contribute to fibromyalgia symptom flare-ups.

This is a guidline for treatment talk to your GP.

Treatment

The goal of treatment is to relieve or control the symptoms. Talk with your doctor about the best treatment plan for you. Options include:

Therapy Programs

Physical therapy

Heated pool treatments

Alternative treatments, such as massage, acupuncture, relaxation training, trigger point therapy, biofeedback, andyoga

Cognitive behavioral therapy (CBT)

Lifestyle Changes

Your doctor may also recommend that you make lifestyle changes, such as:

Eating a healthy diet

Learning to cope with physical and mental stress

Maintaining a regular sleep schedule

Participating in a regular exercise program that includes aerobic activity, strength training, and flexibility exercises. Gentle exercises that may not strain painful areas include walking, biking, and swimming. Talk to your doctor to make sure it is safe for you to start exercising.

Medications

Your doctor may recommend the following to help manage symptoms:

Antidepressants

Anticonvulsants

Sedatives

Muscle relaxants

Nonsteroidal anti-inflammatory drugs (NSAIDs)

Opioids